My therapist suggested I start looking for answers on the internet again...
I have been cured and off all meds for two years but still suffering and do not know where to turn.
I have been diagnosed with Chronic Fatigue, Systemic Yeast Infection, crazy weight gain (50 lbs), gurd, muscle weakness and the list goes on and on!
At my last liver docs appt they "apologized for destroying my life" and said that maybe I would recover in 6 or 7 years. They gave no suggestions for a speedier recovery saying my system was in chaos. This was at the University of Pittsburgh, UPMC.
Cleveland Clinic is somewhat nearby but whenever I tell my story no one seems to believe me or have any answers. It gets more exhausting and depressing with any new visit.
I am sorry to leave out details but there are just sooo many blood-tests that are a bit off I would not know where to start. If I can add any to this please ask.
At my SSI re-hearing the work expert concluded that there were NO jobs for me due to medical poisoning and the need to sleep every 4 or 5 hours.
I'm so sorry you're suffering. Have you been thoroughly checked out for anything else other than extended sides from tx? There are so many other diseases one can get, unfortunately. Also, I am a strong believer in exercise. Got that from my dad, who after 2 heart attacks couldn't even walk a block. So he deliberately started walking for exercise, adding small increments (even if just a step or two more than the day before) every time he went out. After a few months he was walking for a mile, then slowly he got up to two miles, then he started running for a few steps in between walking steps, then more running. It took him two years, but he eventually was running marathons. I'm not suggesting that you will run for 26 miles, or that anybody ought to, but exercise will definitely give you more energy; it doesn't deplete your vigor. Hope you feel better soon.
Thanks for your kind words. Yeah, that is the thing. I have been checked for everything they can think of.
And you would not believe how I exercise. I have never had a drivers license and took up single gear bicycling in San Francisco. I also ran the hills of SF... During treatment I had cramps sooo bad but would do an hour or two of cycling or fast walking but I gained weight and lost energy. Everyone is really puzzled - like my metabolism has completely stopped. I am currently on a diet of about 1200 cal. and taking plenty of vitamins and supplements.
Right now my energy is horribly low but I still manage to cycle to my doc appts which are about four days a week.
Did a B12 injection therapy for about a month, maybe three days a week and it had no effect. I also tried sublingual B12 - nothing. My clinic had a Korean acupuncturist so tried that 3 days a week for about 2 months. Felt a bit of energy for a couple weeks then back to fatigue. My korean doc said that they poisoned me too much and he could not help me!
I was on treatment for 15 months due to a lab error. After great success one report showed my counts going back up so they decided I would end but did another reading a month later and back to low counts so they said I had to start over from that point thus 15 straight months!
And yes, everyone first thinks it is my thyroid but all results are either normal or just a little low or just a little high. One specialist I went to is somewhat infamous for prescribing thyroid meds for everything. He is 74. He looked at my blood records (as big as the NY City phone book) and said in his 40 years of practice had never seen such chaotic blood reports! He did not prescribe thyroid meds as my numbers always changed.
Sorry about all your problems. Indeed, interferon can muck with the metabolism, and perhaps that explains many of your symptons. I assume you've had your testosterone checked? Mine was normal both before and during treatment, but dropped and remained low normal for over a year post treatment. My symptons aren't as bad as yours, so haven't supplemented the testosterone, but you might consider at least trying it, even if you're in the low or perhaps even mid-normal range. You also mention your lab results are out of whack. What tests specifically aren't right?
A few other thoughts:
(1) Diet -- 1200 calories is pretty low and sometimes you need to eat more in order to burn off fat. You might try experimenting more with your diet, perhaps under the guidance of a nutritionist. First step would probably be to get you up to around 2000 -- 2500 calories a day with a balance of fats, protein and carbs. Possibly even protein heavy like the "Zone" diet. The idea being to get your metabolism jump started. Right now, your body may be reading the low caloric diet as "famine" and shutting down.
Don't know how much you're doing, but too much exercise can run down the immune system, esp one that has been compromised. Maybe a little time off, combined with the diet, and then re-introduce starting at 20 minutes a day and then working up to 40 minutes or aerobic work, but no more.
(3) Meds and Supplements
Sometimes it's what we do to help ourselves that end up hurting us. Take a good look at your meds and supplements and see if anything could be causing some of your problems. It could be as simple as being allergic to something in a supplement as some are allergic to milk thistle and I know when I tried St. John's Wort it made me very fatigued. With your doctor's permission, you might want to stop all meds and supplements and see if that makes any difference. Then gradually introduce things one by one.
(4) Take a vacation. Sometimes we just need to get away from all this stuff and let nature work by herself
(5) Mayo Clinic. If your circumstances or insurance allows, they have a 2-4 day workout program where you check in and they go over you head to toe. Sometimes a new medical team is what's needed.
I understand how you feel. I am nearing four years of SVR, and continue to have strange and often debilitating problems. I did two courses of tx, one for 15 months, at high daily doses, and the last one for 18 months, with double the standard doses of Peg-Intron, full Ribavirin, and Procrit. I felt absolutely great, cured even, for about a month after my tx ended....then everything hit the fan! I developed joint and muscle pain, periods of extreme fatigue, skin reactions, sun sensitivity, my blood pressure became above normal for the first time in my life, I have developed metabolic syndrome, high blood sugar (as in pre-diabetes), erectile dysfunction, recurring welt-like mouth and cheek sores, lots of gum loss, and bone thinning! I struggle with energy and motivation issues, and I often feel like my lungs burn when I workout or do aerobic exercise. I frequently feel pain in my ribs, sort of a costochondritis type syndrome, and it flares up when my face gets the lupus-like red patches on the cheekbones. The tiredness and constant need to yawn is really annoying.
Its very frustrating to be SVR, and to have worked so hard to get free of the virus, only to be dealing with a system that is going beserk, and a body that feels like it has been hammered into submission. Oh yes, did I mention that my eyes are dry and often irritated (as in Sjogrens Syndorme), and I have more dental problems than ever. Root Canals, and phantom inflammatory jaw pain, etc. My neck and shoulders feel like they are riddled with fibrosis. I have a really hard time sleeping comfortably in any position, and get shoulder, neck and arm pain every night. No real problems with this during tx! I slept soundly and without pain during tx.
I continue to try to push through all of this, but sometimes feel like there is no end in sight. The doctors have just about NO CLUE what to do, but many have told me that interferon can really cause bad long term problems, and change your system drastically. Of course the HCV doctors were not the ones to tell me this. The Interferon problems should be over in a few months, according to them! Right. I wish you luck, but I do not think there are many answers yet for us. Unfortunately the medical community is either in denial over the post-tx problems, or they just don't feel like dealing with it.
My post treatment problems are no way as bad as yours, but some similarities - esp with the metabolic syndrome, blood pressure and motivational issues. I know you've mentioned a possible connection between these symptons and 'persistent' virus, but if I were to place a bet, I'd put it squarely on the interferon. I don't think it's so much that the interferon brings these conditions out of nowhere, but it seems to magnify whatever was going on, and bring out of the woodwork anything just under the radar. This may be one reason why some people don't seem to have any post tx symptons and some do. In my case, I was genetically predisposed to both metabolic syndrome and high bp, but the interferon definitely magnified the problems. If my genes were different, perhaps the interferon wouldn't have done as much damage.
And as frustrating all this stuff is W/SVR, think of how it would feel if you were going all of that and did NOT get SVR. Trust me, it is much more of a bothersome thing when you realize that in addition to post treatment health issues, you all have the Hep C...still and have to deal with that, too. I am not trying to minimize your problems, far from it, they are real concerns. But, there's also the blessing that you have of been cleared of the HCV. I'm still trying to get there..... and I'm still having the post treatment(s) issues as well.
I am soooo soooo sorry that some have to deal with such aweful post side effects. Maybe more needs to be done as to look into the plp that have them. It really does not matter that there are far less plp who have the lingering post side, it is the concern for the quality of life. I sure hope more will be studied in the near future.
And, the there are those like susan400 that have both post sides and still has HCV. I am sorry that you are still struggling.
One day, Maybe one day, things will get easier for this disease.
Frank,,,It is terrible to be cured of hep only to be left with lots of unknown medical issues and my heart does go out to you. We spend so much time in drs offices before,,,during and after tx that you just don't want to be living your life in drs office but,,,,,in your condition,,,I would be having every test run I could so I could get some answers and some relief!
DD,,,I also didn't know how bad you had post sides and I can see why you are constantly looking for answers. It has to be frustrating!! Are you currently working and if so does any of this interfere with your work?
Thanks for the inquiries and kind comments. In spite of the wide array of symptoms, I still try to live a pretty normal and active life, with lots of travel and some exercise and a little golf, tennis, etc. I run a consulting business and push myself hard to keep up with the demands, as well as family, kids (mostly grown and graduated from college and grad school, and another still on the way toward college), and some community activities.
Yes the post-tx problems do interfere, but I am good at keeping them 'invisible' to the outside world. I have to push very hard to shake the fatigue, and work through it much of the time. I really feel it in the evening, and have a hard time keeping from falling asleep frequently once dinner is finished. Waking up and getting going is also a real 'bear', and I feel groggy and dazed on waking, beyond what I have ever felt before....even with eight hours sleep. For me the answer is probably to keep the healthy eating and exercise regime at a high level, and then to follow up on medical issues and try to address each one individually with the right doctors. BP is manageable, and probably some of the metabolic syndrome markers may be amenable to continued diet and medication, etc. I am not sure what will really mitigate the fatigue, the periods of weakness and almost trance-like feelings when sitting for awhile, etc. Motivation is really tougher after tx, and though I do feel healthier in some ways, I also feel less strong physically, less excited about everything, and more prone to bodily aches and pains.
Most people who know me have NO idea anything is amiss, and have never had a clue even during my tx'es. Its hard to explain how crummy you can feel, while appearing so normal. Maybe over the years some of this will fade away, but I am not extremely optomistic that everything will feel a lot better. We will see. Best wishes to all of you!
i am 1 year post tx and still have fatigue, skin problems and slight depression.
i always try to voice my concerns over txing when it is not urgent. if i did not svr, even at stage 3, i would never tx again with present drugs when better and shorter tx is so close to approval. it has ruined my life. do not know what else to say.
Hemoglobin was at about 14.5 at last labwork about six months ago. Seems right in the middle of the range. Everything else lab-wise is in-range except for metabolic syndrome markers..triglycerides, cholestorol, BP, etc. Even did a Testosterone test, and as I guessed, middle of the range. Whatever the Interferon is doing or has done, seems to leave the labs looking somewhat unremarkable. For the amount of ill feeling and number of odd symptoms you would think something more definitive would appear on the labwork. Although my ANA remains elevated, and goes hand in hand with the 'interferon autoimmune syndrome' that my rheumatologist described to me a couple of years ago, after I had a battery of tests. He said, well at least its not exactly Lupus!
Gee Whiz, I only get to have pseudo-Lupus! Can't even have a full disease to complain about.
How are you doing lately Mike. I hope all is going well, and you are continuing to feel better after your SVR, and your meds related incident.
Wow, I am so happy to find this forum. I thought I was the only one (of course, LOL)...
Where to begin? My greatest depression over this issue is that I was sooo extremely healthy. We figured that I was living with this Hep C for about 20 years but my count was very low, my liver was healthy, I had no symptoms and my geno type didnt have much success with the treatment. I thought the doc would say "OK, looks like youre staying healthy and living with HepC so come back in a year and we will see how youre doing" BUT NO. He said that they had seen patients get much worse in their 23rd year, even die!
So, Yeah, It was the worse decision in my life to go for the treatment. And all my docs say but youre CURED of Hep C.
I went back to the Liver center in Pgh last year and told them I was still suffering and wanted to end it all. My docs nurse practitioner had just returned from an international convention on HepC. After telling her what I was going thru the first words out of her mouth were "I apologize for destroying your life". So I am sitting there thinking "youre not suppose to say things like that"! She also said that we seemed to have sped up your genetic problems and what would have happened in your 70s is happening now (I am 45 now). This is exactly what jmjm530 is refering to! Can you imagine my depression after hearing all this? My psychiatrist is amazed at my coping skills!
She also mentioned about changing the cellular make up and then said something about genetic changes too but wasnt too clear on that. She ended by saying I would probably shake it all off in 6 or 7 years. I am still trying to figure where she got these numbers.
In my next appt I asked the main doc to confirm what she said and he confirmed it all! I even got that on tape.
I am being pushed to go to the Cleveland Clinic by many around here and wonder if they have such a program as jmjm530's mention of the Mayo Clinic.
thanks everyone for all their support, you have no idea what it means to me,
I feel a little guilty after all I have been reading because I have been feeling pretty well. My only issue is that my hemoglobin is below normal and had been dropping slowing but consistently for at least 6 weeks and I couldn't figure it out except that my surgeon once said he was afraid that I would have residual anemia because of all the treatment I did. Part of my drug regimen since transplant has been magnesium oxide and 2 weeks ago I realized I had forgotten to refill it and had been off it for 2 months or longer. I started taking it immediately and my Hb went from 11.9 to 12.5 in 2 weeks. I get labs every 2 weeks which allows me to see everything so I know it's been dropping albeit at a low rate since 6/26 - still SVR per draw on Wednesday, by the way. Anyway, I haven't been as energetic as I would like but with borderline anemia I shouldn't expect to be. Do you have a clue what mag-ox has to do with Hb? I sure don't but something improved my Hb and RBC and that's the only change I have made. So things are good and thanks for asking. I wish you well my friend, Mike
Sorry Frank to hear what you are going through.I hope you find a doctor that can help. I was feeling fine for about a month post tx and now not as good. I found this old post in the Neurology Forum. This fellow was tx for hep C and here is what he has to say and the advice the doctor gives him (he is SVR BTW)
"Over the last year I have had some minimal numbness and tingling in the very tips of my fingers and toes and occasional fleeting stabbing pains in random places of my body. I have chronic HCV so I also have a lot of joint and muscle aches and pains. Over the last couple of weeks, I have started having frequent sharp stabbing pains in my hands and feet and in the last week an increase in the numbness. Now I have some numbness extending down my fingers and in my toes. A couple of nights I have been awakened with pain in my feet and several nights I have had to sleep with my feet off the bed and uncovered because of burning. As far as the HCV is concerned, I have been in a sustained remission, but I am having some symptoms of relapse. Could this problem I am having with my hands and feet be secondary to the HCV. I am really limited on what I can use for the pain since Tylenol and Ibuprofen both are supposed to be harmful to the liver. Any advice would be much appreciated. Thank you.
Hepatitis C certainly can cause parasthesias, peripheral neuropathy. It might be best to see a neurologist and confirm the diagnosis of peripheral neuropathy. There are many good neurologists in the Cleveland area, in particular at the Cleveland Clinic. You could arrange an appointment at the Cleveland Clinic by calling 1-800-CCF-CARE. There are medications on the market such as Neurontin that are not metabolized by the liver that might help you find relief from your pain. When you see a neurologist, he or she will be able to tailor a medication just for you.
CCF Neuro[P] MD, RPS
I cant believe how many of the same symptoms you and I have. You have a much better grasp on the list than me! I was on the same meds: Peg-Intron, full Ribavirin, and Procrit. You mention so many problems like gum loss, and bone thinning which reminds me that my dentist was shocked how his root canal fell apart. He expected it to last 8 years or more but it was gone after a year!
Then four months ago I woke up with horrific shoulder pain. My GP says try aleve without even getting up to check me out. A month later I had lost so much range of motion even my GP was shocked. Ordered an MRI and I had tendinosis as well as some arthritis and a spur. They also noted enlarged lymph-nodes. So they have no idea why I have tendinosis because no accidents or surgeries. A month of physical therapy goes well and I gain some movement. I also get a TENS unit to help with the pain but at nite cant find a position to sleep! My second eval after another month of therapy showed that I had lost movement again. Again no cause for any of this. If another month of therapy doesnt work they want to put me under and crush the scar tissue then insert a pain pump of morphine with daily therapy! Sounds so barbaric!
DoubleDose, you mention metabolic syndrome and I wonder what tests are involved with determining this. I think you mentioned testosterone, triglycerides, cholestorol, BP. Are these the metabolic syndrome tests?
I will be seeing my GP this Monday. He is new to the clinic so want him to run as many tests as possible but as you say in your last post it is amazing how unremarkable the blood work turns out! I was refered to a doc considered a quack ("but he is known to have success with difficult cases") and they are the ones that diagnosed me with a systemic yeast infection. Their office is too far for me to get to with my energy level now so I have to use my GP nearby. They have no clue about a systemic yeast infection and refuse to prescribe the med the quack prescribed. Then last month my candida came back high since being off the quacks meds for a number of months! So will they do some research into systemic yeast infection???
And doubleDose your sense of humor is soooo great - pseudo-Lupus - I love it. I too have tried to stay as positive as possible and keep busy and not think about it but how can you not think about it when after sleeping 10 hours straight (with pain) wake up, have a double cappuccino and feel so tired out 3 hours later you cant stay awake. Go to lay down and sleep for 10 mins then the pain wakes you up so you lay there for another hour trying to find a position just to get another few minutes of rest! I had a 3 hour psychiatric evaluation for my SSI re-hearing and that psychiatrist said I had been tramatized by the medical community! No joke!
take care all,
thanks for the great info and thoughts,
p.s. I have found that half a Provigil (100 mg) has helped me with energy for five or so hours but still must nap soon after.
Are you on anti depressants? Depression will cause bone numbing fatigue and that's one of the sides of interferon therapy especially higher doses and longer term. Something that I do for fatigue is take 300mg COQ10 and 2000mgs of carnitine a day. It gets your mitochondria working on making energy. Might be worth a try for a month. Another thing you might consider is going to a detox health spa type place for a few weeks of therapy. Met someone in a chemo ward that went to the optimal health insitute in San Diego and got detoxed and said it helped her a lot. Feel for you and wish you luck.
I will include a link to a good article on Metabolic Syndrome. Also, lately there has been a lot of press regarding HCV as a cause for Type II Diabetes. I think both issues are much more likely for those having had HCV longterm and having gone through therapy. You might want to monitor both closely for awhile with your doctor to see where you stand. Here is the link:
I really empathize with you on the pain, sleep, and fatigue issues. I really think that both the virus, and the tx cause a 'fibrosing' of the connective tissues, and joints leaving us with nasty, crunching syndromes that interfere with normal activity and sleep. The neck and shoulders seem to be popular locations for this syndrome for HCV post-tx'ers, from what I have read anecdotally over the past few years. Don't expect to find any reference to these problems in the medical journals (other than Diabetes, and a few references to Metabolic Syndrome caused by HCV/ or TX).
The post-tx deep fatigue is a reality for many of us, and my HCV doc said when I was on tx that about 50% of tx'ers who SVR end up losing the fatigue symptoms! Of course I was sure I would be in that group. Wrong! Its weird, because when I am up and going, I can really do a lot of physical stuff for a full day, and work very hard outside on yardwork, hiking, sports....but as soon as I stop...I feel like a vegetable again! I nod out in the car when riding as a passenger, and in the evening watching TV. While working at the computer I can just fall asleep, very easily. Its like a heavy, overpowering weight in the brain, causing you to drift into sleep. I also feel lots of 'interference' now in my neck, spinal column, and shoulders...like it is all too knotted, and 'tied up' at a very deep, spinal level. I sometimes feel off-balance when turning my head, or moving my neck or shoulders in certain ways. Its a really nasty feeling.
The dental/ tooth, gum and mouth sores issue is really a pain to deal with. Teeth seem to be 'autoimmuned' out of existence, dissolving internally, becoming loose in the bone, etc. My oral surgeon, and also my endodontists say there is NO infection in the teeth or gums! Its more like a dissolving, and technically is called tooth, and bone resorption. I think it is caused by autoimmune reactions. The interferon really sends many of us off into chronic 'autoimmune' land, and changes our whole cellular response system, and immune responses. When I see my cheekbones get that little red rash now, I pretty quickly realize that the systemic autoimmune problems are starting to flare also. They seem to go hand-in-hand.
Costochondritis is also a big problem for me, and doing some research I have found that it OFTEN accompanies autoimmune diseases. It can make your ribs really ache in front or in back, and for me, when it flares, it feels like a 'spear' going through my upper back and spine, right into the front of my ribcage. I am starting to realize that many of these symptoms come on as a group, or together, and may seem unrelated, but are probably all part of the autoimmune response. So for a week I might feel fairly normal, and then suddenly have back/rib pain and knottiness, as well as a rash on my cheekbones, a feeling of weakness and strong fatigue, and also really difficult neck and shoulder problems. This syndrome also frequently affects my gastro-intestinal system, and causes a sort of IBS set of symptoms. Again, I now thing they are all expressions of the same thing: autoimmune flare-ups!
Good luck to you, and nice to hear from someone who shares the same issues to a major extent. I hope things start to improve for you over time.
Frank,,,,See if you can have them do a test for "Cryoglobulins." Test procedure is very sensitive. Tech cannot deviate from the proper procedure.
DoubleDose- there seems to be a connection with ANA and cryo. An ANA marker also showed up on my labs last year, but no one thought too much of it except that if it was 'higher" it might be lupus. I hate to think that it might be Cryo but it is one of the reasons an ANA marker would show up it seems. You might want to look into it since you have an ANA marker. Some things that we think are post sx just might be Cryo and not post sx.Hope not cause the treatment for Cryo stinks. Read SJL's post over on the other side. Forgot which thread maybe "hot flashes."
no, this is not the norm, BUT it happens to enough to where one should not take tx lightly, also as a geno 1 with a 50% success rate i feel it should only be tried by ones who have advanced stages of liver damage not when one can possibly wait 20 years for newer and much better drugs. in the 10 years i have known i had it the drugs have gotten much better and there are 2 new drugs in phase 3 trials at this very moment that should be revolutionary.
if one started now by the time he was getting his final viral count they would most likely be on the market. although combined at the present with peg/riba the rate of success should skyrocket and the lenght of tx time should be around 60 days.
GOD bless the researchers.
Addas was a little far out there. However nobody should take TX lightly. For some its makes since but for others it can create more problem than it solves. I have had doctors disagree totally on how a person should proceed. I think there is still much to be learned on the long term affect of the virus as well as TX.
I agree even more so now than before. I, like everyone else on these meds are experiencing the sx’s and DON”T know if they will all subside after tx’ing and giving the examples posted on this thread by many who have completed tx is giving me great concern about the end of tx and if there will be one.
i do not mean to second guess your decision to tx now. i only feel from experience that with the possible danger from present tx and new tx soooooooo close i would have given anything to wait.
now you have started it makes no sence to second guess you decision.
i do feel far to many dr's take the choice to tx too lightly as they do not have to suffer it and have little knowledge of sides present or future.
You and I could be twins as far as post treatment symptoms. I have actually been confirmed to have CIPD. Just use your search engine and type "CIPD" to check it out. You will see that most all of our symptom's are part of this disease. As far as the sholders and neck pain, and not being able to sleep in a usual position, my doctor says mine is fibromialgia (sp) . The only thing that has helped with this is Lyrica.
not on anti-depressants now, only anti-anxiety (Lorazepam 0.5 mg). I was on anti-depressants during treatment with suicidal thoughts and they really messed me up so trying to stay away from them. The Provigil (100 mg) has helped a lot with exhaustion but only for about 5 hours. I just started Acetyl L-Carnitine supplements after learning I was low. I also take meds for gerd & temazepam 15mg to help put me to sleep. Thats all for the meds so I am pretty happy. I am on these additional supplements: multi-vitamin (Dr. Linus Pauling - super & herbal), Magnesium, probiotic pearls, CoQ10, Ashwagandha (great for energy - the Indian ginger) and lastly, DHEA. Yeah, I would love to go for a couple weeks to a detox spa and maybe getting SSI disability can help with that...
thanks for that link. My blood pressure has always been pretty good but I do have the waist and will check on the other numbers.
I think youre doing a little better than me on the deep fatigue. I find myself able to do an hours hard physical labor (yard work) and as you say, stop and fall into a deep brain fog. Have you tried Provigil? I havent noticed any additional side effects at all and get 5 hours of good energy and lose the brain fog. Unfortunately, it is suppose to be very expensive and my insurance probably doesnt cover it but my psychiatrist has been kind giving me a ton of samples! He is a good guy! I dont have any of the "interference" and am hoping I never do. It sounds just horrendous.
I will ask my dentist about "tooth and bone resorption". It seems that you have pretty good medical advice where you are. I dont!
I think that youre right about the autoimmune flare-ups. I have had those sudden rib aches and wondered wtf is going on! You seem to push yourself more than I currently am and wonder if that is why your are getting more serious side effects? But I think that you have been on treatment longer (doubledose) and off longer so your system is even more messed up. Monday I will ask about costochondritis.
Also, like you I have somewhat started to give up hope for relief. I use to be so positive but it is getting tougher and tougher. Unfortunately, I am not a suicide type but just wish I could end it all - just too crazy. It does make it a little better to know I am not the first! Thanks for being there DoubleDose! I also hope that you get some kind of relief. Man you are really tough!
I will ask about the test for Cryoglobulins and inform the tech about the importance of proper procedures.
I tried a search for Addas but didnt find anything. Can you link me to a post of his? thanks.
thanks everyone for so much great info. Dont feel sooo very alone now,
Yikes - my whole post went away... ARRGGGGH... LOL!
I just wanted to say:
Is the TREATMENT --- WORSE --- THAN THE CURE?
Honestly - no.
Treatment stinks to high heaven. The lingering after effects are awful - and some days feel intolerable.. The side effects are phenomenally hard on a body.
But one only needs to see a patient in the last year of End Stage Liver Failure to think - but there by the grace of love - go I.
I can take all of the rhematoid arthritis, the costochondritis, the pains, the aches, the brain fog, the mood swings...
I cannot take swelling, bloating, decaying and dying.
It's simply a matter of which one is worse... To me - dying is much worse.
To me --- dying THAT way... is even more worse.
TX that is current may be the only chance I - or others had -- at clearing... at living... even a semi normal life. (Some folks may have been able to wait - I don't know)
But I don't know when ---- if ever ---- there will be a better cure... or if the next cure might not have worse side effects --- and how long before you know?
I could live with this --- I might not like it every single day --- But --- I can live with it...
And I can laugh today --- I can laugh every day now... Life is good - and there is light at the end of the tunnel.
Frank - you're not alone - you just seemed to have had more sensitivity than most.
It may clear out --- But I do have a couple of suggestions for you...
CLEASING YOUR BODY OUT --- Drink lots of things that would cleanse your system - keep flushing it out --- Keep your body hydrated -- water water water water water.
Go pooooooooooh a lot... LOL! (ok - think cleansing --- ok?)
keep doing that - and eventually you will get the toxins out... It might work for you.
Abbass wasn't right or wrong.. None of us are... He just went about it the wrong way. He used massive spam tactics and pointed people in the wrong directions. He was angry --- not communicative --- didn't share --- only shoved stuff in your face.
EVERYONE responds to Medicines individually based on their own bodies.
But when are you going to be healthier?
If you had Cancer (which folks - HCV is pretty much the same thing... just not tumorescent) wouldn't you try to kill the cancer ---- before it killed you?
Well HCV is basically the same thing... It eats at you -- kills your liver... Do you want that to continue?
Do you know it's going to stay static? Do you know if it's going to be ok today --- but too late tomorrow?
HCV is slow --- but there's a certain point that you cannot turn back from... And each person's point is different.
Right now the current TX of IFN and Riba are the only SOC --- nothing and I mean NOTHING else works...
It's like some drugs will kill you the first time you take it... Well --- IFN has it's drawbacks too...
But our society doesn't understand that ALL medicines can do that to them.. They think headache.. advil... Yeast infection... monistat... HCV - IFN...
It's not all roses - anything you put in your body is going to have an effect on you.
No one should take TX lightly.
But neither should you shy away from it. KNOW what is happening in your body --- know what the possible outcome could be --- know what IFN has done to others --- and make an informed decision...
I couldn't choose to die --- or let this disease kill me any more than it already had.
I had to fight... because I don't think in 10 years I'll be any healthier to be able to do it...
And who knows what the new drugs will cause in 10 years.
That was my decision... so I'll take those side effects --- now and forever --- than to lay their, having esophogeal bleeds, extended swollen abdomen, can't walk, can't talk, can't eat... When the liver shuts down --- it isn't pretty ---- and it lasts a LONG LONG PAINFUL TIME.
I treated --- a little pain and brainfog be damned. LOL!
Where do you come up with this your going to die unless you do TX. My word do a little research. Very few people actually die from Hep-c. Why do you feel your in that group? The vast Majority of people will adapt to the virus and live a normal life span. Some people will develope a certain amount of liver damage. Some will get to stage 1 and never go farther and some will get to stage 2 and never go farther the same with 3 and 4. A very few people whose body can't deal with it will have major problems. This fear is not warrented.
I had significant damage that had already taken place. I believe that I would have continued decaying.
I wasn't adapting - I was getting worse. For me, the fear was justifiable. I believe in killing the virus before it kills me.
I wish I could say that I was ho-hum --- just having a few bad days. But I had gone through cat scans,MRIs, Blood test after blood test, ammonia buildup --- and not a darn doctor understood from my symptoms that it was liver related. Of course, now, they all go --- ahhh yes... It was your liver. LOL!
But still - for me --- I felt it was killing me. And I do not wish to be killed by a disease - whether I'm eventually going to adapt to it or not.
Just my opinion - --- just my thoughts on the matter.
I am pro treatment tho... I don't think it's for everyone ---- I think each person needs to decide for themselves.... They need to know it's not a perfect cure... For me... it worked.
It doesn't work for everyone --- and each person will have their own side effects...
You might be right --- very few people die from it... But they die from complications of it... The fact that their bodies were too weak to fight normal things.
It's cool that you think differently --- but for me --- that is how I felt...
while it may be true for SOME people that won't die of HCV, many will.
in fact, in Pakistan, thereis an alarming number of patients in their 40s and 50s with ESLD. I have heard of children under 10 with cirrhosis and enlarged spleens. Maybe its a genotype 3 thing, but maybe not.
i am beginnign to think that genotype 1 has the slowest progression, while genotype 3 has the fastest.
Yes, I had the same pattern a couple others have mentioned - felt great one month after tx and started treating for hypertension, chronic pain, and insomnia one year later. Three and a half years post-tx the hypertension was under control w/Lisinopril, much of the chronic pain resolved, some insomnia. Four and a half years post: haven't taken any pain meds in 9 months, working on getting my hypertension meds dose reduced, but still pretty dependent on Ambien. Got blood drawn yesterday to check my blood sugar since I've had some numbness in toes and out of control appetite.
Interesting observation about G3s. I was geno3 and watching someone I knew who was G3 go through ESLD is what decided me that cirrhosis scared me more than IFN.
I have always wondered about geno type progression. I wonder what the percentage of the 15 to 20 % that don't become chronic are geno 1 compared to other genos. I disagree with the statement that Many will die and some won't. When you look at it logically if almost 1/4 can deal with the virus on their own it has to mean that many others are able to control it even with out clearence. There will be some who's genes just won't put up the fight. ( the 37 genes that actually fight the virus ) This thing with TX is also an unknown. For some it may be a life saving course and for others it may in fact cause great harm. Time will tell.
Good Morning Team,
I have been reading everybodys post and taking in all the information. I just thought of what my docyor told me when I was in his office because I thought I had developed diabetis as a result of tx due to all the symptoms I was having. He said when he was in medical school studying different diseases that his mind told him that he had them. I have to be carefull how I take in to my mind info from this forum and the internet in general. I just currently relapesed, I am 4 months post tx.I was EVR and did 100% of the meds 100% of the time. I felt so good for one month after tx. ended then began to have many promblems. It became quite clear that I was going to have to have to go and get my life back. The way I started to do that was to ask God to show me the things each and everyday the things that I needed to do in order to get better. I began to eat much better. I began to exercise. I let go of the things in my life that were causing me undo stress. I have a 30 day herbal detox planned in the near future. I am trying to get a referall to a new hepatologist so I can get another opinion on my status. My best to all
I absolutely understand where you are coming from, regarding the urgency of doing tx for many (not all) people with HCV. I also understand your comment that there is a price to pay with any treatment, etc. But WHEN will we ever be able to have a discussion of post-tx problems (a reality for many of us) without someone jumping into the conversation like the house is on fire, and acting as if we are trying to prevent or scare people from doing the tx?????
We are merely discussing the problems that we are experiencing, and trying to determine how to best address them and cope with them. Is this not allowed? Let's not start being afraid of discussing the facts and our real experiences for fear of discouraging someone from making a decision to do tx. I think we are all adults, and should have ALL the information out there available for our ultimate decision making. Hiding the truth, and glossing over problems is a prescription for disaster, in ANY undertaking. Let's not try to justify it here, because we feel the need to 'protect' someone from what might be some slightly disturbing information. If the drug companies found out that your favorite painkiller might just cause a heart attack in about 5% to 10% of those taking it, would you want them to cover up the information because of all the good that the drug is doing?
Let's just be able to discuss issues without panic reactions, and acting as if we are doing something out of line. I certainly do not want to discourage ANYONE from doing tx, especially if they are medically determined to be an appropriate candidate for tx, or if their health is threatened. But for goodness sake, let's try to understand that post-tx problems, and the discussions around those problems, are just that. They are not at all a statement about the desirability of or neccessity of doing tx. Most of us would do it again, because we felt we had to do it. Someone with no liver damage, no symptoms, and shorter term infection might just be better off waiting a few years to see if the 'cocktail tx' regimens allow for a much shorter and less damaging tx. Anyone with HCV, and needing treatment should follow the advice af a reputable, highly experienced HCV doctor, in any case.
I don't mean to be argumentative, but I think we deserve to have the post-tx discussion and input, REGARDLESS of any other issues. We are not passing judgement on the tx, but trying to deal with the (often not so nice) aftermath!
My husband and I both have been through Hep C treatment which resulted in CURED. The cure is much worse than the disease. We both felt good. My husband did his treatment 8 to 10 months before I did. He started in 1999 into 2000. I started my treatment in 2000 into 2001. Six months for the both of us. Now we are in terrible health. There are times that we feel good for a short period. It seems like a cycle. Our first onset was with costeochondritis. Felt like a heart attack. After that its been one thing after another fromhypertension, diabetes, cholestrol,rashes, IBS symptoms (me more than him with this) aches, pains, muscle cramps, fatigue, bad teeth and the list continues. Before we did the treatment we asked about any side-effects and was informed of none but was told of the treatment's great success. We were diffently miss lead. If we had known of it'slong term effects we would not have taken the CURE. The only good thing that has come out of it is that when he gets something new going wrong I already know what to expect. When he gets something going on low-and-behold 8 to 10 months later I get it too. I have the heads-up on what to expect next. I wonder why the doctors are so SURE that if isn't from the medicines we injected ourselves with three times weekly and all those pills three times a day. Coincidence? I don't think so. My husband is in his 40's and I am almost 60 but you would think more like in our 70's or 80's if you could see our charts at the doctor's office. Now arthritis is attacking us. I don't want to make anyone feel hopeless, but for those of you who have hope that this is a passing thing, just keep in mind that Hep C is a very strong virus and that the medicine you took is too. The medicine destroys anything that it was attached to as well as the Hep C. We wish ALL of you the best of things and proy that the doctors will quit denying what the CURE does to our bodies. Yours Truely,
8 and 7 Years Later
Gee, it sure never seemed like a tx right TODAY or die a horrible death decision. after 37 years i was healthy, jogging 2 miles a day, riding jet skis and atv's,scuba diving and enjoying life. i never realized i was so sick?
This seems like a more than appropriate moment to check in with this forum, which was a real home to me--sometimes a retirement home, sometimes a lunatic aslym & Critical Care facility--during my 60 weeks of treatment w/ Pegasys,Riba & Procrit from June'04 to September '05. I just got back my two-year PCR results, a "negative" by bDNA Quant, which further solidifies my SVR status. Hallelujah! Still, the struggle's not quite over. The thirty-year active battle with this virus might be an end, but there is a definite post-treatment aftermath that has required exactly the same amount of diligence, ingenuity and financial investment as before. So I'm here to testify, too.
Intensive cytokine arousal for a prolonged period of time is bound to leave its mark on the body, mind and soul. I have to confess, first of all, that the last two years have seen my own emtional variant of PTSD, which has gradually improved as the memory of treatment fades. But tx casts a long shadow, and it's taken a long time to become both lighthearted and genuinely motivated again. Especially because there are so many good friends and comrades in the hep community who are still in the trenches. This disease and its treatment are traumatic to the max: no way around that. And people who have not been through the experience themselves will never understand the depths of suffering this treatment can bring, not to mention its absolute relentlessness.
The first year post-tx was distinguished by IBS-like symptms which I had never before experienced in life. After a few months of distress I was biopsied and dx'd with gastritis, which my hepatologist said he's seen lots of in his patients coming out of treatment. It is not life-threatening, certainly, but very painful. I refused the prescription for Prilosec and went the complementary route, and can now report that the situation is finally behind me. Stomach and intestinal lining was pretty badly inflamed--looked like a bad case of measles--which I definitely attribute to all those months of ribavirin.
Then there is the neuropathy in my feet, which first presented 6 months into tx and is still resolving itself, three years later. Unlike some members of this forum, I have never experienced numbness, for which I am grateful. Instead, there has been constant berserk sensation in both feet--parasthesias is the medical term--distinguished by 24/7 tingling, buzzing and spasming. As a hiker and former modern dance enthuasiast, foot pain and loss of flexibility is completely unacceptable to me, and I have been on an ongoing search for a cure. I have refused Neurontin (aka Gabapentin & Lyrica), because this anticonvulsant drug merely masks symptoms and frequently causes brain fog, dizzyness and loss of balance. Been there, done that while on tx, thank you very much. Although I have been sorely tempted to take it--I filled the prescription once when I felt like I couldn't stand the pain another minute, but then backed off. Instead, I've been using high dosage Alpha Lipoic Acid (1200 mgs daily), high dosage GLA (2 gms), and done a dozen sessions with TENS, cold laser and photonic stimulator (used for diabetic neuropathy and sports injuries). And, of course, plenty of stretching and mind over matter. As of this moment I can't report success but have definitely experienced major improvement.
Finally, there's been the exhaustion issue and crappy resistance. Fatigue has been a constant companion since coming off of tx, and I suffered three long bouts of flu this last fall and winter. Thyroid function has also been shaky. (Developed autoimmune hypothyroidsim during my first interferon tx in 1990, and this time around around was hypothyroid throughout tx despite taking the highest possible amount of replacement hormone.) I mention this because hypothyroidism, fatigue and poor disease resistance are definitely linked, as is peripheral neuropathy: hypothyroid suffers are known to have greater incidences of carpal and tarsal tunnel, etc.
When an improved thyroid protocol did not competely eliminate my exhaustion, I wandered outside of conventional medicine and did further metabolic testing (see canaryclub.org) and discovered that there is something known as "adrenal fatigue" and that I had managed to develop that, too. Cortisol levels were at a total flatline--luckily that test wasn't an EKG--which goes far in explaining why I was feeling so constantly fatigued. I was put on very low-dose hydrocortisone (not enough to cause adenal suppression), and after three weeks of this regime I am beginning to feel much perkier, although I still have to pace myself very carefully. The prescribing doc is convinced that the prolonged stress of tx left me in a state of adrenal burnout, which can also occur after the adrenals have been compensating for poor thyroid function over a prolonged period of time. It seems it's all interrelated (but no surprise there!).
So these are the contours of my own recovery process. Believe me, it's taken work. I've had to pursue whole new directions of research, launched several emotionally and physically draining lobbying campaigns with my doctors to make any progress at all, & blah blah blah. What I do know is that we are not simply handed SVR, nor do we automatically thrive after the rigors of treatment have ended. Every inch regained is a struggle, and there have been moments when the thousand and first pinprick seemed way too much. But I am determined to get there, so I eat organic, take nutritional supplements, keep up exercise, avoid alcohol, and receive regular acupuncture. And will forever keep a wary eye on my liver function tests....
With wishes for the best of health for everyone reading this.
Please try grinding wheatgrass. It is a miracle food. Also, I would go to a naturopath. They are legal in Illinois and New Mexico now (Arizona soon and maybe Nevada). They might know how to kick start your immune system. Please also get lots of massage, reflexology or Jin Shin Jyutsu.
"i am beginnign to think that genotype 1 has the slowest progression, while genotype 3 has the fastest. "
Niceguy - that is a very interesting observation. I was believed to have only been infected for 10 - 11 years at point of DX - and had significant damage to the liver. I had significant side effects and was getting worse on a weekly basis. Let's put it this way --- I had a catscan, MRI, Mountains of blood tests all looking for Tumors or Cancer. It was noted I had an enlarged Liver, Kidneys weren't functioning normally, something about the pancreas and I was having ammonia buildup. It wasn't until someone got smart and said HEP PANEL her - Because my enzymes were barely above normal range. No one thought to test me for HEPC - because everything seemed normal or just slightly elevated. They thought I had cancer - wbcs were down, hbg was down - but liver enzymes were just barely above normal.
When they did finally Hep Panel me - it was - a EUREKA moment.
They lactulosed me - they got me on TX.
My sides have diminished from that date. They got hard to deal with on TX --- but they are fading away now.
But with the progression of the disease - as fast as I was accelerating with side effects - there may be a very good chance that you are right about 3's being faster.
I wonder if anyone has studied that.
I know if I had continued without intervention - I would not have survived for more than 2 or 3 years past the point of dx.
Take that as you will Bobbyullc - you --- YOU --- might have time... or be in perfect health. I, unfortunately was not.
I'm glad you've been very healthy - and that you still are. My wishes for your continued health.
EACH PERSON REACTS DIFFERENTLY TO THIS DISEASE AND THE TREATMENT.
For each person it is a personal decision.
I can only share my personal decision and my life and my opinions.
You - however, have hurt my feelings with your sarcastic remark about my commentary, I think it very rude --- unless of course, you enjoy treating people like dogmeat.
I don't "diss" your comments - nor do I make snide remarks about people that I do not agree with. Each person is different. Chill dude. --- LOL - go running or something... Live healthy while you've got it.
So well said! As I said in my original post, my therapist suggested looking for help online as I was not getting it anywhere else.
I am really at my wits ends trying to figure all this out so really appreciate just the acknowledgement of these issues after treatment.
8 and 7 years, bobbyullc,
Thank you so much for adding your stories!
Thank you also. Such a powerful and informative history! I am so much better prepared for my next doctors appt after reading thru your post. It really is amazing what I have learned due to everyones ongoing research and struggles.
Best of luck with the rest of your treatment. I dont think you should give up or worry since youve already begun.
I bought an Apple laptop. Apple has their own user to user forum which I visit daily. My laptop has a number of problems and maybe there are another 100 users who notice the same problem but Apple has sold 200,000 laptops of the same model. Yeah, I am not happy with my specific laptop but I am a very small percentage with problems. I am new to this forum so dont know the spin on the discussions but if I only go by the users forum then I would think Apple has the worse product ever made - this is not true for most and I hope you will be able to report the best of luck in your recovery!
Great suggestions and I wish I had all or even a few available in my small PA town. I am also trying to survive on less than $200/month of state disability and a lot of it goes toward supplements! I miss living in San Francisco sooooo much and maybe if I can get section 8 housing and SSI I will move back. Keep your fingers and toes crossed!
I met a homeopathic pharmacist and he said that my case was really complicated. He did have some suggestions but at the same time my friends Russian physician had developed a supplemental treatment for me which I promised to follow. I will ask my guy to look at this thread as well as post on the forum you suggest. thanks.
My most stressing issue right now is the tendinosis in my shoulder. Therapy was having a positive effect for the first month and in the second month a relapse so the docs want to put me under and crush the scar tissue then install a morphine pump then I do therapy for a week. This sounds so barbaric I cant believe this is standard practice. Now after reading the issues on this forum I am starting to think if I survive the crushed scar tissue/morphine will it just come back since the originating issue has not been addressed?
I have another month of physical therapy before deciding and home therapy is helping too so do I decide to just live with it or what?
If you are going to have a physical, please ask for a full Thyroid panel. If your thyroid numbers are all over the place, you may have hashimoto's thryoid. Do you know if they ran an antibody test? Of course I am sure you know that treatment can damage the thryoid, especially if you have hashy's. I didn't have hashy's, but my TSH was 23 times higher than it should be a few months post treatment. It is funny, I had no trouble on treatment other than the routine low hgb, taking procrit, etc. As soon as I finished, I had to have the emergency appendectomy and then my thryoid slowed WAY down, and was undiagnosed form 4 or 5 months. In truth, my thryroid almost made me sicker than tratment. Now that I am on thryoid meds, I feel almost like my old self! I hope you figure out what is wrong.
Y'all think thyroids play that significant a role? I have a question then --- do you need a full thyroid panel or is the basic cbc count good enough? I mean a basic overall look... Mine runs normal right now --- no reason to look further --- right?
I have been reading all of these comments and I really feel so terrible for all of you. My husband was diagnosed with hep c last year and he also had fistulas that required 2 seperate surgerys so he hasn't been able to start treatment till recently. He started his treatment on the 9th of this month and he is so sick he cant even function . He was so sick last night that he decided not to take his pills anymore and is planning to call his doctor tomorrow and let her know. I was just wondering if it was worth it to all of you ?
What geontype is your husband? If he's a 1a or b he can wait until 2009 when the new treatments should be out and it should cut the tx time in half. Also, he can take Dr. Zhang's herbs that lessen the side effects. I have taken them for 4 years (only treated the last year) and I have no itching, no rash or sores in the mouth. My biggest problem is waking up early. If I go back to sleep I have wild and vivid dreams. But I only have 4 more weeks of treatment. I did retire at the end of May.
Frank, I wish you could come back to the West Coast. I would work on you. I do reflexology and Jin Shin Juytsu. I live in Sacramento. It's not heaven but it has everything I need and it's close enough to more cultural events. I retired at the end of May and I will be ready to do bodywork again probably in Oct. I'm doing 51 weeks of treatment. I got the nurses to lower my riba because it is weight based and I lost 17 lbs.
First to answer your question: yes it was worth it to me. My experience with these post-tx side effects threads is that many, if not most, who have posted here will also say they would do it again.
Second, I hate to disagree with GrandmaA, but I wouldn't consider genotype a huge factor in whether or not to treat. Also there is no guarantee that new treatments will be available in 2009 or that they will cut treatment in 1/2. It's a possibility, but nothing written in stone.
The main factors I would consider in treating are the condition of his liver and how he can tolerate treatment. What is the stage and grade of his liver biopsy? What does the doctor say about his reaction to the meds? Many things such as anemia, pain, and depression can be dealt with by using 'helper drugs'.
They didn't give him a liver biopsy , he has had a colonoscopy which said his liver was measured at a normal size and all of his other organs were normal . She didn't say exactly anything . She minimized the side effects and made it sound like they would only be temporary. His lungs are extremely sensitive and he coughs double what he used to , he has lost 15 lbs. in 9 days , he is puking from the coughing and cant eat. He has ran a fever every night over 102 , last night 103 and took tylenol which she said wouldn't affect his liver in correct doses.Extreme headaches ,joint aches ,back pain ,blurred vision ,mind is cloudy, paranoia ,suicidal thoughts, the list goes on and on and with all the reasearch we have been doing all morning , it doesn't look like he will be returning to the treatment . I have seen more horror stories from this drug than ever. She didn't give us exacts on his blood tests either .
There are a lot of red flags that stand out in your post.
No liver biopsy.
Suicidal ideation after ten days of treatment.
Fifteen lb. weight loss in 9 days and "coughs double what he used to". How much does he usually cough and why?
A colonoscopy is not what you would use to measure a liver.
Where are you located and what type of doctor is prescribing tx?
Sorry meant he got a colonoscopy and also one of those sonograms that measure his organs (I forget what its called. He had a cigarette cough usually only in the mornings, now he is really sensitive to just about anything he breaths in and it get him coughing and choking on phlegm . The persons name is Colleen Green PA-C MPAS Physician asst. at University of Virginia Digestive Health Center of Excellence division of Gastroenterology & Hepatology.
Hi hepC gang. I haven't been on here in about 2 yrs. I started tx in Dec2002 and did 100% of 48wks...ended tx. Dec. 2203....I relapsed, but my numbers look good now, alt is 18. But I have had soooooooo many other health problems since finishing tx. Tx was hell on earth...but I did it! I had to have both knees replaced March 2006...at the same time...WOW! I had both eyes...cataract surgery...cake walk!!! But like so many others my body now HATES me. I hurt from head to toes, not even kidding..but I am trying to stay as possitive as I can. Has anybody had such joint problems since finishing tx. ????? AND HI TO ALL MY 'OLD BUUDIES' Sorry I've lost touch, but you all are in my prayers as always, much love, Cindee
wow... its NOT just me....this tx is a dangerous thing...
i have been off for almost 2 years (it didnt work) and have re-curring IBS symptoms i never had before, and i knew it was related to the drugs.. now im sure
just spoke to a friend who is on the transplant list, he went thru 4 years of treating and it almost killed him, he didnt clear, and now in addition to having a bad liver he has many other debilitating problems ... he cant work anymore... he is only 48...
From what I am reading here and many other places ,seems to be giving me the impression that yes your survivors but you have lost your quaility of life. So much suffering just to stay alive when I do know several people that are living with Hep C and managing fine without having been treated at all. I often wondered why they wouldnt do the treatment but have never asked. My husband lost his job 5 years ago due to his other illness (that is now fixed because we have had to use a free clinic to get help) and we now have no insurance. We have to travel over 2 hours just to get treatment at reduced cost. If all of these other side effects happen to him we wont have the resources to get him checked out . He tried getting something temporary from SS and medicade because of the first illness and was turned down because we dont have any underage children .He is now too sick to even get out of bed much less go back to work..... 9 days is such a short time and I couldn't imagine him being this way for a year .(Doc said that is how long he would be on the treatment) Thanks for the help !
I met my new doc. He seems to know a lot about the long term poisonous side effects of interferon!
I will probably get some answers from him. Is this really what I want?
I am a bit numb about it all right now so cant really stand to write too much but he notices that I am wasting away from my hands. He thinks I have a mess of a immune system, some serious arthritis ailments and maybe much worse. He spend nearly an hour with me. As he was going over the long list of blood work-up list I showed him my list from this post. During the exam I recognized some of the tests as he spoke out loud to himself... Here is the list of blood-work he has for me:
Comp. Metabolic Panel
Cortisol AM & PM
CBC Automated Differential
Hep. C Antibody
He lists my main complaints as Hep C, Cryoglobiaonia (sp), adrenal (something).
Well, I am pretty nervous about all this especially the HIV. He thinks that waste noticed in the hands could be from the Hep C, Interferon, or HIV.
I wont be able to do the work-up until Wednesday morn and dont see the doc for two weeks and doubt I will get much sleep. I may go to the hospital records dept and get copies of my blood-work before my appt as the suspense will just make my health worse!
Sorry to hear your stories wishing you all the best. Don't have any problems yet but worried. Just cruious, is side effects more prominent who underwent longer tx (42 - 58 week)? Do you think age plays any role?
Met with my new doc today to go over the test he ran a bit ago. I already had a copy of my records from the hospital so I knew that I was HIV free! Yeah! 90% of the other tests were also negative except for Hep C.
Hep C AB Screen = Reactive. Signal to Cutoff = H28.1 (reference Less Than 1.0).
(Note is in composed text.)
This patient's sample tests reactive with a high s/co ratios: > or equal to 8.00. Samples with high s/co ratios have been shown to repeat as positive using a different methodology 95% of the time or greater (CDC MMWR No. RR-3, 2003). Therefore, additional testing for verification of the result is not recommended.
Can someone translate this for me?
He did not run a viral count but wanted to rule in or out the hep c count. So more bloodwork and a CT scan with contrast of chest, abdomen and pelvis.
What is everyones thoughts on contrast?
So again, he says I was definitely not a candidate for treatment in his opinion (1a, low viral count, minor liver damage and healthy non-drinker). Wish I had met him five years ago!
He believes that my liver, hep C or the treatment is messing with my hormones as my estrogen, total (serum) was H136 (130 or less).
So a couple more tests and then I see the doc in three weeks.
wow this is a long list of comments. I too cured in 03 geno 2b. have lots of lingering problems but i was very sick be4 treatment too. the correct thyroid tests are very important! I finally have a dr. who did the correct tests and started me on natural Armour thyroid. You need to get FreeT3, Free T4, TSH, ferritin, Thyroid Antibodies tested!!!! I cant stress it more. (i see you got a T4 and TSH test and thats not enough!! go to www.stopthethyroidmadness.com interferon is notorious for ruining your thyroid. especially when you were on it so LONG.
Why the heck did your doc run an antibody test for HCV??? What on earth would that tell anyone. If you were 'cured' you would just want a PCR to make sure the viral load was still undetected.
I am not sure I follow what he is trying to determine.
I would think he would be looking for signs of abnormalities that might explain your symptoms after tx. Maybe a battery of tests to see if there are hormonal, blood, metabolic, or immune system changes, that might be treatable.
But an antibody test??? Just about everyone who is SVR still has HCV antibodies. They are pretty meaningless as a diagnostic tool for someone who has treated the HCV and become SVR.
Why the heck did your doc run an antibody test for HCV??? What on earth would that tell anyone. If you were 'cured' you would just want a PCR to make sure the viral load was still undetected.
I am not sure I follow what he is trying to determine.
I would think he would be looking for signs of abnormalities that might explain your symptoms after tx. Maybe a battery of tests to see if there are hormonal, blood, metabolic, or immune system changes, that might be treatable.
But an antibody test??? Just about everyone who is SVR still has HCV antibodies. They are pretty meaningless as a diagnostic tool for someone who has treated the HCV and become SVR.
Unless you're misinterpreting what your doctor did, I agree with DoubleDose.
At this point, you want a viral load test (commonly called a PCR or TMA test) to determine if you have hepatitis c or not. The test you mentioned (the antibody test) doesn't tell you anything other then the fact that you may or may not have been exposed to the virus in the past.
Is your doctor a liver specialist (hepatologist)? Sounds to me like he's not and its not uncommon that non-specialists get these tests confused.
Meanwhile -- until you see a liver specialist -- you might ask one of your doctors to run a viral load test. The one I would recommend in your case is from Quest Laboratories and called "HCV RNA QUALITATIVE TMA". Have your doctor write those exact words on a prescription form -- along with a diagnosis code -- and you can then bring that form to any Quest location to have your blood drawn. Alternatively, if your doctor has an account with Quest, they can draw blood at his office. If for some reason your insurance doesn't cover Quest, then ask the doctor for a "PCR" viral load test. You can find a local Quest Center here: http://www.questdiagnostics.com/
Please dont tell me I might need a new doc as this is my only and best choice. I will stick with him for a couple more months and see how it goes. Yeah, I thought it was kinda strange to run this test as WE should know I have Hep C. I am guessing by conversations with him that he wants to cross every T and dot every I...
Here is the next list of tests he has for me...
Chief Complaint: Estrogen H, adrenopathy, Hep C: CT Scan with contrast of Chest, Abdomen: Liver lymph nodes. Pelvis: lymph nodes.
Diagnosis: Hep C, Cryoglobaliumis, hyperestrogene: Blood Tests: cryoglobaliumis, Hepatitis C viral titter, SPEP immune protein electrophoresis by electrofuatis.
Most of the tests are written in docs handwriting and this is what I can make out, Sorry.
I am pretty sure that he ran a bunch of hormonal etc but not sure. Here is a copy from my post above of last run blood work: Comp. Metabolic Panel, Lipid Panel, Cortisol AM & PM, Estrogen, FSH, Prolactin, Testosterone, T4, TSH, Urinalysis, CBC Automated Differential, Sedimentation Rate, ANA, CRP Inflammatory, Hepatitis ABC, Hep. C Antibody, HIV Antibody, RA.
What should be on the list for next time?
Thanks for the help but please understand that for the most part I have very few choices in docs around here and the few people that I trust in the medical field say this new doc is really excellent. All others just seem to be shills for the pharmaceuticals.
It seems that this doc understands that the viral count is undetectable with current tests but of course it is still there.
Either you are SVR (cured) with no virus count, i.e. UND, or you have a detectible virus count and have active HCV. It's imperative you find out which one you are. The easiest AND ONLY way is to have a viral load test, commonly called a PCR or TMA test. Please INSIST that your doctor gives you one to take the guesswork out of things.
I started to have health complaints decades ago. I was diagnosed with HCV. That's when the doctors stopped looking for what was making my life difficult. The first time on interferon/riba I thought I was going to die for a few weeks/months. I held on until after treatment stopped but I never really recovered from that and it has been 10 years.
I went on treatment, several times since. Each time on treatment certain symptoms would diminish, others would flare up. But never as bad as the first time. I always complained of symptoms not generally accepted as HCV related, especially since my liver was in really good shape. I told doctors I suspected an intestinal infection. Fatigue, sweating, headaches, trouble sleeping even when exhausted, jittery "electric" feelings, trouble concentrating, difficulty reading, even difficulty watching a television show (couldn't follow the story). My ability to work went down hill. My hobbies slowly died. I got bounced between GP's and gastro docs for the last 10 years without an answer.
A new doc ordered tests 3 weeks ago. One of them tested stool for the prescence of something that indicated malabsorption in the intestine. I seem to have this compound present (either a sugar or triglycerides or something).
Could be due to bacterial overgrowth.
Can be caused by diverticula, blockage, slow passage of feces through the system, IMMUNE MODIFYING THERAPIES, celiac disease....
Kind of like I was trying to say for the last 6 years to deaf ears.
All those years. When I complained on treatment I was told tx side effects, hang in there.
When I complained off treatment I was ignored or bounced to the "other doctor".
Hang in there. Get some testing done. Keep a log of your symptoms. When do they happen, when do you feel better. If the doctors will not listen at least you can start to get a picture and do things that help you suffer less.
The sad thing is that some treatments can cause some normally harmless or slightly annoying problems to flare up. Sometimes treatment can cause immune disorders.
And sometimes the treatment has nothing to do with the problem.
It is hard to say.
What is important is that your doctors take you seriously, and test are done to try to see if there is a cause.
Sorry to bring back this old post but... Still suffering and I have two new docs. Yeah, another two new ones. I also apologize for not being on the forum for some time but feeling really sick for some time... I have been lurking though.
The local one, a Dr. Uberti, had Hep B and two liver transplants. His wife, a nurse, had Hep C and under the same treatment as me. She finished five years ago and is suffering many neurological problems.
The Uni Of Pittsburgh is a Dr. Rabinovitz. When I told Uberti that I was seeing Rabinovitz he was shocked that I could even get an appt with him. The guy is suppose to be the very best in our area. So, I met with his nurse last week. I went over my three pages of complaints and really shocked her.
She says that I am One In A Million to have suffered like I have. She says that she hasnt seen any other patient as sick as I am nearly three years after ending treatment. She tried to get me to see The Guru (her name for Rabinovitz) but he was lecturing.
They did do a long list of blood tests and most came back normal (as I expected). My iron is low but that is about it...
They are moving one patients appt so I can meet The Guru next week (this Thursday) and I want to bring a print out of some of the people who have commented in this post to show them that there is a large group out there suffering long term...
If anyone who has not posted their long term problems here (but maybe elsewhere in the forum) could you please add comments here so I can print them out and bring them with me to my next appt. If you have posted elsewhere maybe you can simply copy and paste your main complaint details.
I am excited to have a couple new eyes look over my case, but not much hope that they will be able to help much...
Very best news is that I will be getting my own little house very soon - maybe a move in this week. Have been very busy with that too and hope having my own place will help with my health also.
I'm new-ish here and wasn't around at the time this thread ran back in August 2007, but read it this morning with great interest. I believe it's a subject that needs to be explored for both those that have completed tx and those anticipating it in the near future. I appreciated the personal documentation that members provided as they compared notes.
I found the replies sobering, to be sure, but not in the sense that it would terrify me from doing tx if needed. However, it did impress on me the need to explore all facets of tx, not only the sx.
I'm looking forward to your follow up posts and will be thinking of you on Thursday as you meet "The Guru". Hopefully you'll have a few more personal stories to add to your arsenal.
Best of luck and congratulations on getting your own place.
I haven't logged on here in a long time. BUT, I am STILL suffering from post tx. Again, after completing treatment in 2003, I did NOT get rid of the virus(luck of the Irish). Here is my old post. I am 55 now. And those little sores just keep on coming. Mostly on my calves and arms, but still the occasional on my back and stomach. One goes away, another comes up. They start like 3 little dots and then they like meld together. They itch, I scratch, they bleed. Cloderm(prescription) eases the itch a little. My Dr. said he has never seen anyone else with this.
AND, I am still fatigued.
I can get it up, but have lost my sex drive. We used to have a VERY active sex life.
And I sometimes get that numbness in my hands.
Thyroid still out of wack.
Blood pressure still high.
If anyone can offer any new ideas on this, I would LOVE to hear.
HI Again. As a newbie, I noticed this post after posting in response to the itch .It seems that this topic is where it should have been posted, so here it is again, with an addendum.
I am new here. I completed a year of hell undergoing the Peg-Interferon thereapy.
Got almost ALL of the side effects-fatique, loss of sex drive, hair loss, numbness, loss of breath, joint pain, sleepless nights, and the horrible sores and rashes. I would scratch myself to bleeding.
Anyway, after a year, the treatment was unsuccesful. I still have the virus.
It is now 2 years since I have completed the therapy, and I am still breaking out with the sores and the rash. Primarily on my calves, arms, and behind my shoulders. My Doctor said he never heard of it. What a lying mother-f**** he is. Also, my thyroid is still out of whack.
I think that they should make you aware that the side effects can continue even after the med is discontinued. If they told me at the time, I would not have undergone the treatment. I felt fine when I was diagnosed, but had gotten married and figured if I could rid my system of it, I'd give it a shot. What a fool "I" was.
Anyone else still showing bad side effects after 2 years? Any cures known? I stopped going to the Dr when he said it didn't work and if it didn't work, there was nothing I could do. I DO have my blood tested every 6 months, and all is still the same.
I wish I never heard of Interferon.
After reading the previous posts here, I see that the sex drive of others is still ongoing, as is mine. I don't understand WHY the doctor didn't tell me. He said side effects would stop after a few months. Said it took that long for the drug to leave the body. So has this **** totally altered my genetic make-up? Can anyone steer me to links of articles on the subject? I have done countless Google searches, but can find little info on post treatment symptoms.
As soon as I recover from my travels to the big city I will post all I learn from the Guru.'
Good luck with your decisions.
imnokid, I am really sorry to hear of your ongoing problems. I too wish that I had never heard of Interferon or Pegasys.
Thank you for adding your story. I hope to get copies to the Guru and his nurse. Maybe they can start communicating to our various doctors... that is another topic I would like to start = Getting all our genius docs together to discuss what is wrong with us all.
How about taking the totally opposite approach? Assume you are a wacko and proceed from there. You would fit right in here. (read: depression, high/low moods, anxiety)
Work on all the cures that wackos use. Be honest. Be a wacko. You are home.
I couldn't read this whole thread, but read much of it. I too have symptoms as DD describes and we have gone over this before. Thanks DD for specifying your symptoms...not done enough! I didn't SVR and relapsed, but won't do interferon anytime soon. I had a GI bleed twice and had to stop tx at week 47. I didn't clear at week 12, so I needed to go 72. So not surprising I did relapse. As Susan says, it sure is rotten to know how much we have been through and still do and not have SVR.
Earthman; I too was dx'ed with Fibromyalgia. Lyrica has helped quite a bit. Thankfully it is there for us that suffer. I never had this before Interferon, nor did I have blood thinners. now I do. Hate to scare people, but it needs to be known that this tx is poison and can have lasting effects on our bodies.
without sounding insenitive here, we all know right that all the glands are connected right?
Too much or too little of any one substance can add insult to injury....
so Frank you mentioned Estogen 3 times that I noticed. If you are currently on Estrogen therapy this can throw your immune system out of balance every bit as much as the interferon would.
the difference normally coming off interferon, would be say like going from putting 150% octane airplane fuel in your airplane, to putting 80 octane in it....you'd expect a lot of starts and sputters....it takes time for the immune system to return to normal INF production.
However, if I overdosed on any hormone during that delicate rebalancing act... I'd be asking for it....I might as well put water in the plane.......the endocrine system is all intercnnected.....each one feeds off the level of the other, the the pituitary and pineal pretty much run the show. The thyroid is the sergent at arms.....but the reproductive hormones hugely effect our health, and what disease we become prone to.
Women as far more prone to fibromyalgia for instance, and there is an estogen and an HGH component to why that is.
the difficulty with ERT Frank, is that as a male your RNA and DNA are not coded to be operating in an estrogen rich envirionment and that alone could be throwing your entire immune system a continual curve ball each day.
It does that to women who take too much as well, but especially it would do this to a male.
Just saying this in case you had not considered it.
what are your estrogen levels and how did you liver panel come back?
You RA test??????? HAve you has a full work up? ELISA etc.
To be honest I cant recall about the estrogen mentioned above = crazy brain fog makes it lucky if I remember why I stood up...
Anyways, my estrogen is slightly elevated. Estrogen, Total (Serum) = H136 with Range: 130 OR Less.
I am NOT on any estrogen therapy but there has been talk of that???
They just ran a million tests but I cant tell you if the specific ones you mentioned were done most recently. The nurse called and said most the tests came back negative but my iron is a little LOW (I dont have the number) and that I probably need iron shots.
What is making me really crazy is the weight gain. Even during treatment I was extremely active and ate well but gained weight. The nurse finally put to rest that NOT everyone loses weight on TX. She said gain vs. lose is about 50/50. My gynocomastia is out of control too. I am currently on about 1200 cal and either maintain 230lbs or gain a pound or two / month. Really crazy stuff!
I will ask about the tests you mentioned Thursday.
I'm really sorry to hear that you are going through so many problems after sucessfully beating down the dragon. I'm sure someone has mentioned this already but alot of your issues are similar to fibromyalgia. Hell, there's over 100 posts here and I can't read every single one. I too have suffered from gerd, it's ugly but it's certainly managable. Also you said you gained 50 pounds, well are you a larger man than you were before you started treatment? It must be terrible to be in a position where you can't figure out what is going on or what is going wrong. You also mentioned your therapist, I've had one of those more than once. If nothing can be found physically then it could be something else. If something is bothering you mentally it could manifest itself physically and if something is bothering you physically it could manifest itself mentally. Keep this in mind if you haven't already, without knowing your full story I mean your full medical and mental history it's very difficult to help you and I'm sure you figured that out by the many responses you've received. Oh there I go again, it's very possible that you shared a full mental and medical breakdown on one of your responses, my bad. Well I hope you find out how to help yourself, or how you need to be treated medically.
I did not get thru all of this, will later, have to run, big day ahead :)
I am very sorry to all suffering post tx. I did 24 weeks, a mth. off and no better yet, but sure I'll get there. Point is...even 'only' 24 weeks and my body is playing hell to recover. All of you that do the longer tx's go thru a lot more 'damage' (of course) and especially those over and over. I have seen, in reading here, that all too often we end tx and they are done with us! "your done, have a nice life' and than people have to go to their GP's to get help, them not knowing a thing about tx or the drugs, and it's very difficult. Than for those with no insurance, what do they do? My sis in chemo for cancer was told at Shands that they are starting a program with Dr.'s to treat any chemo patients as their issues/problems are different than a 'normal' patient, etc. I think that's long over due and a great thing! Other than continuing with your liver specialist, GI, any post txers have that problem. How can you ever really determine what was caused by these drugs, isn't and so on. It's just a huge puzzle and you suffering need answers!
Sorry your all suffering still. DD and Frank....really hope you find answers, solutions, get better. It has to be incredibly frustrating for you. Before I was finally, properly dx'd with the Hep C, going to Dr. after Dr. being told "your depressed, your fine, maybe this or that" KNOWING something was just wrong, drove me nuts! To finally get an answer was, while crushing, such a relief! I hope you get answers, healing somehow.
I myself have had the treatment over 3 years ago now. I ended up with fibromyalgia, my illeostomy developed problems. I've heard from others who when were on treatment developed gambling problems. The list goes on. It's tough when people think it's all in your head. There is no magic cure like everyone thinks. It's going to take a long time for all of us to feel somewhat better. And you really are never cured 100% of the Hep C your viral load is just not detected in the blood. Once liver damage occurs it takes a long time for it to reverse if it ever does. Once it's done it's done. Keep going and do what's right for you and beleive what your feeling is real.
Have you tried the drug Nuvigil ? I take it and a B 12 shot every other week. Nuvigil every morning it seemed to help me some but I can relate to the post tx symptoms especially the headaches I just know my boss is going to fire me any day now. I took the treatment had a low viral count around 12k and geno type 2 I took it for 2 months and thought I was gonna die. The doctors were pissed because they wanted me to take it for 6 months. This was dec 2010 and jan 2011 they said I was throwing away a chance to be cured of the virus by stopping so soon. Well 9 months later I m still feeling like crap and thinking maybe I should go back through it again. This time I changed to a doctor closer to me at university in Jackson ms. I go over talk with her and we do the test it comes back a couple weeks later nothing. No viral loads I we run it again and then again in 6 months same thing. But my thyroid is still screwed up and the headaches are constant. So I can't imagine taking the treatment any longer than I did. I think it would have killed me. But you can't get one doctor to say anything bad about the drug. The fatigue when I can make it to work I collapse when I get home and the weekends are spent in bed resting. This drug didn't save my life it stole my life.
WoW, cant believe that you found this thread MMS...
...sorry to hear your ongoing issues... it seems that you have cleared the virus in blood tests at least CONGRATS!
I have been fighting for 1.5 years to get back on Vyvanse (somewhat similar to Nuvigil) and just yesterday picked up my first script after this long battle to be back on the main med that helps my main disability of Chronic Fatigue Syndrome!!!
All my other numbers are normal except Iron which is all messed up in every way.
I too have a brand new GP who had studied at one of the Mayo Clinics. His father studied at another Mayo and a brother at another Mayo so he is going to gather a team of family and Mayo colleagues to discuss my ongoing situation and the Mayo P.I.S. (Post-Interferon Syndrome) analysis.
We also talked about Low Dose Naltrexone (LDN) and the possibility of adding this to my cocktail of meds... The new doc is pretty excited to have me as a new patient and re-establish research buddies at Mayo - which I have been looking for now for many years!
If you look up P.I.S. (Post-Interferon Syndrome) you will find others suffering long term and maybe educate your doctor to the new Mayo term.
Best of luck in your goal toward a healthy future,
Seems that even with all the connections my GP cant get much from his Mayo Clinic friends.
What they would tell him was that The Mayo Clinic is treating PIS with LDN and that is all.
It is great to have confirmation from the Great and Might Mayo but... too bad Mayo is sooooooo secretive!
Got a zillion things to catch up with... not sure how many peeps will see this and should post a new thread on it all... so Watch Your MH Screen!
p.s. Once my GP figures it all out I will be testing out LDN against my PIS!
Hey there Frank, did you ever get your viral load checked? I know that was back in 2007 when he checked you for HCV but not the viral load.
Just thinking about what you have been through what you continue to go through.
Did you try the LDN? I hope you don't mind the questions.
I am hoping that you and DD find some answers.
This is almost as bad as trying to find out what is wrong before you are diagnosed with HCV. It took me over 11 years to find out I was HCV positive. Almost too late for me.
yeppers, had all the viral load checked, a number of times! Pretty sure began at around under 300,000 but will have to check the old booklets/notes.
My GP studied at the Mayo and he has asked them about PIS being used with LDN. They informed that they are but would not tell him anything else (since he is no longer a part of the super secret team (UGH)... so we are going to have to start our own program... couldnt be fast enough for me to begin!
I think it was more than 11 years for me so Dee you def have time mess up yourself with Big Pharma junk, hehehe
Thanks for your continued interest,
p.s. sorry, I cant keep my eyes open anymore!!!
New here, havent been able to get ANY help from medical doctors or community, and they always blame it on something else that doesnt even make sense! Perimenopause does not interfere with peoples lives in the way my issues have! And now Iam seeing that there really isnt any help for those of us to seem to have long term sx after tx. I feel like Ive been poisoned and I was so much MORE healthy living with the hep c than I am now... Yes I got SVR (last I was checked) but MY truth is I was happier before tx!