Kalio, I am interested in your symptoms of stage 3

Kalio,

This has been posted one million times already, I just know, but I'm feeling brain fogged today, so I'm going to ask again.  Can you sort out the symptoms of stage 3 from what you might believe that IFN left you with?

I'm getting ready to write THE letter to Doc Scott and want to be accurate for him in explaining how I feel, besides just saying "bad".  And I understand there is a whole list of symptoms of stage three online somewhere, but I'm trying to be accurate for the doc.  Could you tell me what you have determined to be your symptoms separate from what goodies IFN may have left you?

Let me clarify, I have been walking 3 miles a day at least four days a week for 12 weeks now, it gets easier as far as breathing, but I am still very stiff and truthfully, experience a fair amount of pain in my joints, muscles, etc.  Enough pain to make me think that maybe walking isn't such a good thing.  But Doc Scott needs to know a fatigue level and I'm struggling with trying to quantify it for him.

Any help you can give me would be appreciated, it has become my New Year resolution to get this going, my tx, whatever it may be, so I'm am foggily trying to write a descriptive letter.

I have sicca, parotid enlargement, curved nails, extreme fatigue, nauseau but no throwing up yet.  And I am tired, tired as hell.  So your experience might help me clarify what different than just old age and out of shapeness.  Thanks!

Willow

[jmjm530]

Obviously I'm not Kalio but maybe I can add an additional perspective as a former stage 3. The most important thing to note is that as a *group* there are NO symptons of stage 3 per say, and often no symptons of stage 4 (cirrhosis) except in the latter stages.

On an individual basis, there may or may not be what is sometimes termed extrahepatic symptons at stage 3 or any stage but because many of these same symptons occur in the non-Hepatitis C population, it would difficult to say that sympton "A", for example, is from Hep C, or would have been there anyway due to genetics, age, etc, etc.

Even more difficult to distinguish Hep C synmptons from those of the treatment drugs themselves. All the symptons you mention may or may not be related to Hepatitis C, but again, there are no hepatitis related symptons of stage 3 or any stage for that matter. Hope this is helpful.

All the best,

-- Jim

[Kalio1]

My symptoms in the year before I was diagnosed properly were all directly attributed to Hep C by several docs but only in hindsight, all deemed Hep related due to the immune system strain. My enzymes didn't rise enough to alert them when they finally tested them unfortunately and stayed around 80, got to 100 only once. but this did not alarm anyone, and in fact I was told it was nothing to worry about..I had Sjorgens syndrome and some mouth sore thing (I think was called Bechets disease or something like that)I had shortness of breath all the time but they told me my heart/lungs were "fine" no one connected it to HCV until later on. Multiple severe infections from tiny scrapes requiring IV antibiotics,unexplained bruising, large 3-6 inch bruises with no cause. If I scrathed an itch I got a large bruise, even touching my skin would leave a red mark like an injury,I was told by one guy it looked like cryo but not knowing what that was I didn't realize I needed a special test for it at the time, I had spider nevi, I looked like I had red polka dots all over me,two bouts of spinal meningitis and two spinal taps, neither of which did they check for HCV, constant intestinal problems,strep throats,bowels alternating between the runs and being stopped up for a week,unexplained belly pain. bloating,then a large drop in weight for no apparent reason,then a gain for no reason. I was nauseated and vomited often, I thought it was "nerves" often food was not digested, slightly dark urine I ws told "drink more water", light stools were explained by saying I drank too much milk (ha ha), migraines, constant debilitating joint pains w/ swelling,I felt like I was 90! I also got shooting pains, short lived but breathtakingly painful all over that would come out of nowhere and hit anywhere, especially my feet.Leg, back and foot cramps that would bring me to tears. Restless legs at night which about drove me bats. Fatigue on a scale of 1-10 ran about a 6 to 8 daily, by evening a definate 10. I would have to be woken up, Id sleep 14 hours straight if no one disturbed me. It was insane. By the end I was fainting out of the blue ( at work! freaked my coworkers out but good). I have never fainted in my life before. No appetite, eye bleeds ( whites of eyes would fill with blood)was told there was some corneal tearing and given steroid eye drops. I had herpes showing up in new eruption spots ( very odd to get herpes on your arm rather than your mouth!) they told me my immune system wasn't able to fight it off and I got huge sores, very painful and gross.I had big moods swings, fought off depression but thought it was due to my stress level and feeling so cruddy. Strange discolored patches of skin, I forget what they called that one, purpura I think.I saw different docs for different things and unfortunately this worked against me because I didnt have a PCP at the time due to moving so no one saw the "big picture" One ER doc suspected lymphoma at one point and told me to get a PCP fast."stress" and "age" was one docs "diagnosis" then finally I saw a new PCP due to moving and he figured it out on the spot.
My platelets were also low, 65.
All of this resolved when I started treating, my platelets eventually started going up, they are now around 120 now, which is pretty good being on these meds. I still am fatigued and have some joint pain and migraines but I feel they are due to the meds. Spider nevi all went away. Intestinal problems all totally gone. So far I have had not used rescue meds, got close a few times but was able to avoid them. According to the Fibroscan my liver is now a stage 3, but I was told I had cirrhosis about 6 months prior from a CT scan. Fortunately there was no evidence of it on the scan, but without a biopsy I of course dont know. I have an enlarged spleen.
I feel stronger and my "life force" is much stronger. Before I was diagnosed I could feel my "life force" was fading fast. I feel the tx saved my life. Looking back I have no idea how I was functioning and doing all I was doing with all that going on, but the docs seemed nonchalant, so I figured how bad can it be? Heh. No one even thought to check my liver for quite awhile, they'd do a CBC and tell me I was fine.
When it finally was checked my liver function has been solid, that threw them off too, my hepatic panels didn't look "bad" I sure felt bad though!
My VL was 700,000 when I started tx the first time, Sept. 05.

I think what happens is we just get used to feeling horrible and begin to think that is just how it is. I know that was happening to me, I kept thinking "wow this getting old stuff sure hits fast!" the various infections and other troubles were not linked together at first, I was very concerned when I got spinal meningitis AGAIN and saw online that that could be a sign of "underlying immune system illness" which it sure was.
Hope this helps.

[Kalio1]

I have read often that only about 30% of people even get symptoms. Had I had ONE doctor instead of docs in Er rooms all over the country Im sure I would have had a proper diagnosis sooner. It was all the travel and moving that contributed to the worsening of the situation. Business meetings w/cocktails and poor nutrition and extreme work stress sure wasnt helping. On top of that, I was having steroidal injections every 12 weeks for 3 years for my back prior to my diagnosis (which is where it is suspected I contracted this)plus I had a back surgery just before that in 2000. My back surgeon thought I had a drug allergy to the steroids. I and my doctor feel the steriods escalated my damage quite a bit, the alcohol, even though it wasn't much, didn't help and a lifetime of poor eating habits ( but I was thin!) sure didn't help either. As HR puts it, "you wree on the expressway to liver fibrosis" the virus, poor eating and alcohol. Ouch.

[GrandOak]

Why have anyone describe what they believe to be their symptoms or go on-line to find a list of them somewhere at all?

Simply describe what you are seeing or feeling in yourself.  It might also help to have another close to you describe their observations in how you look or behave as well.  What benefit is it going to be to describe to your doctor what someone else feels or how do you know what you are experiencing is the same as someone else's experiences?

Ask your doctor to define a scale for you (i.e. 1 = not being able to lift a finger, 10 = able to bench press 100 pounds 20 times) to measure your fatigue against and then you can identify where you fit, or perhaps more specifically where you fit at different time after different activities throughout your day.

The danger I see in using someone elses descriptions is that should the doctor still not know exactly what you mean and questions you to qualify it further and you can't or do so in terms that are unrelated, then it may result in them questioning whether you are truely having those experiences or not and may result in having them cast a shadow of doubt over things you tell them.

[Kalio1]

the thread is addressed to me, no one needs your moronic commentary.

[DoubleDose]

I agree with many of the above comments.  Stage 3 does not produce any particular set of symptoms generally, but the HCV itself often does cause a wide range of extra-hepatic symptoms.
Treatment often causes its own symptoms, which may mimic HCV symptoms, only usually more severe.  Possibly because HCV causes immune system reaction, as does Interferon!

The real problem is that after we end tx, many of us have far worse symptoms than before the tx.  And I mean for the SVR's too!
I have come to believe that the Interferon leaves our systems fairly rapidly, but the effects on our systems are often deep and long lasting.  Several prominent doctors at Johns Hopkins have told me, point blank, that Interferon often alters the system and cellular responses for long periods of time, and sometimes permanently.  It creates a cascade of immune responses, almost like 'training our immune systems', that continue to behave as if the interferon were still being pumped into our bodies.  So, the old HCV extrahepatic symptoms, which were sometimes pretty miserable, are often replaced by a worse set of immune system reactions, experienced as nasty symptoms, triggered by the long courses of Interferon.  Cancer patients and MS patients have also experienced these same post-interferon effects.  

So, in short, I do not think you can really 'sort out' what is post-tx interferon induced, or HCV induced (except for SVR's, who now have no active HCV to cause the symptoms!!!).  If one felt somewhat bad before tx, and then after doing the interferon, and regressing their liver damage a stage or two, they feel much WORSE after ending the tx.....then I think you have to assign the majority of the blame on the effects of all that Interferon on our bodies.  I think many researchers and doctors are now beginning to see these effects, and acknowledge that the drugs can cause some pretty nasty long term problems all by themselves.  Its always a trade off with the current tx.....if you need to save your liver, and have progressing damage, then you almost have to do the treatment, and take whatever consequences come your way.  For some lucky ones, there are very few long term consequences....for others the problems are difficult for a year or so.....and for another group it seems, the interferon causes some very severe, and disturbing medical problems that may remain on a permanent basis.  Its a real crapshoot!

I do not regret doing two long tx'es and getting the SVR finally....but I have paid a real price...with lots of ongoing sx mostly of auto-immune nature.  They are too numerous to describe again, but I am sure, from my past posts, you have read about them.  And, yes, I would do the tx again, had I not SVR'ed.

Am I a happy camper though????  No way!  That is why I push for more research, more honesty about the drugs, and more medical involvement on all fronts.  Better treatments, and better follow up for the damage created.  Most doctors 'wash their hands' of everything after the SVR.  Go see your GP, and have a good life.  Of course the GP has no clue as to what is going on.  Any you would not expect them to.  The HCV doctors should shoulder this ongoing responsibility.  There is much more to learn!

DoubleDose

[jmjm530]

Rev: I am not slighting Jim but I do tend to believe he is suggesting these symptoms are often due to aging (tell our Iranian friend Abbas that and then duck), as others have on the forum. I just don't buy that. The combination treatment is a potent mix of medicine and has a BANG that lasts far longer than our doctors tell us in my opinion.
-----------------------------------
Maybe I wasn't as clear in this post as I've consistently been in others. I DO believe, as you say, that tx is "a potent mix of medicine" with a very toxic and longer lasting "bang", more than our doctors let on.

My current comments regarding aging, etc, were more directed at those manifesting symptons *prior* to treatment. Some attribute these pre-tx symptons to hepatitis, i.e. extrahepatatic symptons, but IMO another reasonable explanation is that these symptons are very common in the population as a whole, especially in the aging population. This is entirely consistent with both your (and mine) treatment experience where we felt better prior to treatment versus after.

I hope this clarifies my position.

All the best,

-- Jim

[willows]

Well, there is alot of info here for me to digest.  I guess the one thing I do KNOW is that I feel worse now that I did on tx three years ago.  About the same fatigue, maybe more, out of breath, aches and pains that I KNOW are beyond old age, a permanent, gravelly voice from untreated thrush and strange curving nails.  Plus, the ole URQ pain.

Kalio,  you have many more symptoms that I do, I am an early stage 3, but a rapid progressor, as my doc puts it. So what I think I learned is that the stage has no real symptoms, but my vl of 5,000,000 and ALT of 200 is probably an indicator that the liver is getting ticked off and acting up.  Okay.

Rev,  you are one funny bad boy.  You keep getting spanked here, but you are funny.  I cannot apologize for being twisted, especially when you seem to have "toned down" a bit?  Congrats.  As for your post...I am afraid...I think I'm getting ready to start the "burning times" again.  Won't know til about March tho.  

I am woman, I am strong, I have insurance and they approved another biopsy, so I know exactly how my new year will start.  Now...that's twisted.  Happy New Year to you all!

[Kalio1]

Im with you, Im just glad I did eventually find out before my liver failed. They symptoms can really throw docs, they don't "usually" see people with symptoms like that and don't make the association to HCV. I was tested a few times for HIV though, even with no possible exposure risks some of what was happening must have looked like an immune problem but they never made a connection to HCV.
I attribute a lot of the damage I have to the steroids I was pumping into my spine in large doses, the meds escalated the situation rapidly I think in my situation too. You were smart to stop the meds when you did. The fact I contracted it in my mid 40's and have geno 3 all can be predictive of rapid progression. One doctor told me that contracting it through spinal injections made it even worse. There were several other people who contracted it in the outpatient pain clinic also. Add lots of work stress and poor eating and slosh a few drinks on it and voila, sick as a dog. My enzymes not being off the charts didn't help. Fibromyalgia was suggested a few times, I told them I knew that translated into " I have no idea why this is happening to you or what it is" type of diagnosis and all they had to offer was pain meds. I feel sorry for people who get that one and also CFS, then the docs stop looking for answers and do the eye roll at you and your symptoms and send ou packing with pain meds.
Im so glad to hear you too started feeling better right away, tx is no picnic but for me it is SO much better than how I was before. We can at least know we have halted the viral assault. Hope you are hanging in there with your tx and I hope you have a Happy New Year. Let's hope it brings SVR to us ALL.

[LindyK]

I thought I would throw my 2 cents in.  Female - 51 yrs.  I am Geno 3 so did not have a bx.  I am treating - just finished week 6/24.  My V/L before starting treatment was 4,750,000 copies.

My story:  In November, 2004 I suddenly got a severe headache in the back of my head.  Ended up after about 5 days in the emergency room where they did CAT scan and something else I can't remember now but I declined a spinal tap.  They gave me a shot and told me it was a migraine.  Now I have had migraines all my life and I KNEW it wasn't a migraine.  It took about 2 weeks for the headache to clear and then I woke up one morning and my entire body hurt so bad like I had climbed a mountain with no training.  Went to my PCP and he said it was a virus.  After about 2 weeks with no relief, he ran every test that had to do with diseases of soft tissue but all negative.  (Never tested for Hep C).  All my liver functioning tests came back in the normal range but ALT and AST were always right at the high range and once going over just a little.  Fatigue set in, then the restless legs, short term memory loss, inability to think of the names of common objects, mood swings, low grade fever everyday - thought I was losing my mind.  Then one of the labs showed a high Rheumatoid factor so I was referred to a Rheumatologist who dx me with Fibromyalgia.  Had a sleep study done - dx w/restless legs (duh).  I was put on medication for pain, depression, anxiety, and for the restless legs and medication to aid sleep.  I was so sick by this time (about 6 months after the initial incident) that I had to take off from work 12 weeks of FMLA. For a over a year and a half I suffered with this, got a little better after my leave, was excercising, taking supplements, eating well and then I started to decline.  I had come to the conclusion that if I wasn't better by Jan 2007 I was going to go out on permanent disability.  I had almost lost my job due to performance, mood swings, and absentee issues (this was really bad as I am second in command in a large social service organization).  Then, during routine labs this past August, my RBC went to 15.5 so my PCP suggested I donate blood since it would be free.  In September I was notified by the Red Cross that I had HCV!  I immediately stopped the pain medication (well tapered until I was totally off)and some of the other drugs, but stayed on the AD.  I took off of work October and November to prepare myself for treatment.  I started feeling much better when I started tx almost like my old self, although I'm feeling some fatigue now from treatment.  As Kalio said, my hep doc thinks I got sick from immune system strain and adding in all the other meds which taxed my liver further.  Guess everyone is different.  Funny thing, I did a lot of research on Fibromyalgia and never once did I find a connection between Fibromyalgia and Hep C.  Immediately when I started research on Hep C it linked to extrahepatic symptoms such as Fibromyalgia.  Wish I had figured it out a long time ago.  Would have saved the last 2 years of my life when I was barely functioning.  But I'm glad I did find out and holding out high hope that I will clear the virus and acheive SVR!

[chcnme]

Hi Linda.  I enjoyed reading your story (and everyone else's too).  

You said: I started feeling much better when I started tx almost like my old self,

Those words jumped out and grabbed me because ....if there has been one thing I've wished most to come with treatment, it's to have a visit from my old self.

Happy New Year!

[Imagine]

Actually I don't mind moronic commentary once in awhile. This disease is filled with seriousness and can be very depressing. I like to grin sometimes. Please don't hold this against me Rev.

[bobbyullc]

I HAD ZERO SYMTOMS (symptoms) BEFORE TX AT STAGE 3 AND HAVE FATIGUE, SKIN PROBLEMS, AND SEVERE MEMORY PROBLEMS 6 MONTHS POST TX. NONE DUE TO OLD AGE.
BOBBY

[scubadiver30]

I also had no symptoms wahtsoever before TX (that would require me to go to the doc). I just felt pretty bad the days after I drank. I just though I wasn't a party animal anymore...I got my ALT/AST elevated for a couple of years until diagnosed. Then I started to see a connection between HCV and spider veins in my ankles, red palms, and mild fatigue (that was never considered a problem)...
Right now I'm F3 on the metavir scale (never had a BX though) but don't know for sure. I'm on TX (6th week) like Lindy and although I feel like **** most of the time the tiny veins are desappearing and my palms do look normal (not reddish or chappy)...
I do hope I don't get and autoinmune sx after TX but heck If I achieve SVR I will deal with it gladly...

Well, I want to wish you the best year ever (to Kalio, Lindy, Rev, Jim Cuteus, Willow and all) and I do hope 2007 is gonna bring good things to all of yous.
I couldn't have made it into TX without you..Right now I do feel I'm in control with this due to your valuable info (even if a mirage)
Feliz a

[copyman]

scuba,
how did you or doc determine that you are F3 without a biopsy? did you have a fibrosure or fibroscan test? thanks and happy new year

[LindyK]

You are so right about getting a Fibromyalgia dx.  Everyone just stops looking (including me) for something else.  For 2 months before I was dx, I Googled my sypmtoms a gazillion times and all I came up with was Fibromyalgia so I was not surprised at the dx.

I have been going to my PCP about 13 years so he knows me well.  He felt so bad about never having tested me for Hep C.  He even said "I just never could see you as a drug user" (which I never was) but there is still that stigma - "if you don't fall into the high risk group..."  I actually had to comfort him as I was very involved in trying to get answers and I never considered Hep C either (didn't even really know what it was).  He is a gem and was always willing to test for something I thought about that he hadn't.  So I don't know...I just try to look at it as a spiritual thing...there was a reason for me to suffer...certainly has made me much more introspective and attentive to my body and has given me great compassion for people who suffer from any chronic illness or disease.  As the saying goes - you can't really understand until you've walked in my shoes.

Tx has been going well up until this past week when I have started to feel very fatigued.  I am hoping it is just the aftermath of all the Christmas preparations and celebration.  I went all out this year because I COULD!

I want to thank everyone, and you especially for all the guidance, answers to questions, etc.  As Scuba said - I couldn't have made it into treatment without you either!

Happy New Year!

[GrandOak]

More often than not too it seems that if you answer the doctors "Do you drink?" and "How much a day" questions with "Yes" and "Just a couple or so", that your symptoms are usually also simply attributed to alcohol consumption.

If you answer "No" and "None" and they believe you, then they start digging to find another reason for the symptoms you are experiencing.  Too often it sounds like it's the "they believe you" block which becomes the biggest hurdle.

I suppose if you walk in with tracks up and down your arms, or claimed your were once an avid DeadHead, that it would be easier to skip the fluff and get right to the brass tack testing.

I think it is also hard for many to be genuinely honest about their past and that they may have engaged in things during the stupidity of their youth (or should I say during your invincibile days).  At least I know it was for me until I came to terms that those whose opinions matter most would not hold my past indiscretions against me and/or had already forgiven me for them and as for the rest, who realy gives a rip what judgements they may pass.

[APKhaos]

Like many others, I had no symptoms. Played intense sport, raced cars, climbed, rafted, etc. If anything, I was beginning to feel that I'd maybe lost a step but out that down to the years passing.

The wake up call came when my tolerance for alcohol dropped to zero. Never been a habitual drinker, but there were always a few memorable nights. The tolerance issue was just one or two beers or two glasses of wine with dinner, which would have me completely wiped out the following day. Massive hangover, dehydrated feeling, headache, etc. It was this that made us decide to find out if anything unexpected was wrong, which led to the HCV dx.

[scubadiver30]

I never had a BX but I had 3 fibroscans and the last 2 show 10 KPA so that would be consistent with an F3 reading and 26 years of infection. The doc's never too concise about it either...He said since I'm already TXing :-(
I feel like an F2, to tell you the truth

saludos
scuba

[LuckyLiver2009]

I am new to the site. I am reading previous post, but I am not familiar with some of the verbage that is being used.
What is SVR ?
Why is the genome type important?

Also, what type of problems are people experiencing after treatment?
I am ready to get treatment, I just need to find out how to fund everything.  
I really want to get to feeling better.  I am in stage 3/4 and am experiencing severe fatigue, some confusion,body aches, dizziness....and so on.
I am meeting with an Internal Med doc to get a referral to a GI, to start this process all over again.  
A recent posting suggested checking my ammonia levels.  That never occured to me, I will ask for this on Thursday.   Any information that you can share with me will be helpful.
Peace :)

[charm27]

This post is years l- I doubt if you will receive a reply from them....

SVR is sustained viral response...it is when there is no virus found in your blood after stopping meds and 6 months have passed-
You are then cured and have attained SVR!

Cured!

Good Luck!