I am a 52 year-old, caucasian female. I finished a year-long treatment of Pagasys and Ribavirin in 06/2008. It was successful! 18 months later however, I'm feeling little change from when I was taking the drugs. I'm having problems in many areas. I have chronic fatigue, "brain fog", short-term memory loss, rare but severe memory loss (like a blackout, during which I've had conversations, driven, walked, eaten), lack of focus, difficulty with spacial issues, tremors, acute joint pain, clumsiness and more. This has affected the quality of my life significantly. Neither my hepatologist, primary care physician or psychiatrist have heard of the effects of this treatment continuing for this long and have offered no suggestions. Please, what is my next step?
I treated with interferon/ribavirin twice, the last time I finished at about the same time as you. I have achieved sustained viral response, and have no remarkable long term issues to report, other than I feel several years older than when I began my treatments.
However, you’re certainly not alone; others reported similar issues. Hopefully, they will check in, and offer you some advice; I just wanted to let you know this isn’t unprecedented. Keep on your doctors; perhaps they will bow to pressure and dig a little deeper; if nothing else, your info should be on record.
If I were you, I'd make sure there isn't something else wrong. I supposed it's possible these things are a lasting effect of the HepC drugs, but perhaps not. You've gotten two years older since you started treatment (if I have the timeline right). During those two years "life happens". You may have some other unrelated health issue that surfaced during those two years but you attributed to the HepC drugs. Now, with the HepC drugs out of your system, you're still not "right". So it's time to track down what's happening. Try to get the attention of some competent medical professional and dig into this. You deserve to know for sure if this is from the HepC treatment or not. And if it is, maybe there's something they can do which will make the symptoms less of a problem.
I am 56 yrs., female. 1 full year of treatment for Hep C back in 2006. I to have fatigue, brain fog and chronic joint pain, even worse than pre-treatment.
I see Drs. all the time, to no avail. The end of this month I am going to request seeing a Dr. at the University of Pennsylvania. I need a label to this. I don't want to take pain pills and/or large quants of asprin, very protective of what goes thru my LIVER! Do any Drs. on this site ever respond to these forums???
I wish the manufactures of the Pegasys + Copegus would contact us for Post treatment feedback.
I guess they figure the drugs did the work they were intended to do, and if I had known the post treatment pain they were to cause, I still would have taken them. But, would have never believed to be in such discomfort.
Have a good day, and know you are not alone.
Sorry to hear bout ur problems, I've never treated and I will never put interferon in my body no matter what happens. The reason for this is that a cousin of mine became I'll a few years back, he was given interferon for what the doctors suspected was ms. He was only treated for a short time but the guys life is now ruined. And as for the companies who produce interferon getting together to let people know bout post tx sides lasting a long time, I seriously doubt they will ever do that, at best this would put a lot of people of tx which would mean a loss of revenue. At worst if u believe the conspiracy therorists, they already know interferon causes life long illness in patients and don't care and will do anything to protect their profits. If you want real feedback run your own survey of people who have treated on here and other sites.
I was one of the luck ones. No long term sz. been off a month. I experience brain fog some. I think that is the norm for me LOL. I have some fatigue, but thats really all.
I hope you get better, buy the way I only treated 23 wks
You said, "I will never put interferon in my body no matter what happens"
I agree interferon is very harsh and does leave lasting effects but unfortunately there is nothing else if you want to avoid cirrhosis or liver cancer. Even the new drugs need it to work.
I would much rather have the effects of interferon then die from liver disease. It probably is one of the worse deaths imaginable
More than likely your condition is related to something else and you should be seeing a neurologist to try and get help. I had a TBI in '93 and this seems more reminiscent of that than of interferon at ALL and I did 72 weeks of the stuff.
Did you try a neurologist yet, it could be something like a slight stroke or something - at our age we aren't getting any younger!
I think the poster of this thread is pretty much right in the middle of what the post-tx side effects group has been experiencing. These symptoms are very typical of those who do seem to experience lasting effects from tx. Many others can also attest to that, and NY Girl I am surprised that you are so quick to rule out the tx as the cause of the poster's symptoms. Surely you have read countless threads (mine included) on this forum detailing similar post-tx experiences!
Anyone interested in looking at the prior posts on this subject will find many, many threads on this subject over the last five years or more. Just query previous threads on post-tx side effects, symptoms, problems, etc. Its all in the archives, and much of the substance is very similar to what the poster of this thread describes. Hey, I am also one of the lucky SVR's, over 7 years since ending last tx....and I would tx again....but lets be honest in exploring the problems that tx causes for a large subset of the people who treat. The drug companies will obviously never do this on their own, but we must urge our doctors to look for answers! They are pushed by the drug companies to believe that side effects are almost always short term, temporary....but many surveys, anecdotal experiences, and even a large international patient sample, all indicate that this is NOT the case. Long term side effects are, in fact, pretty common, from what I have seen read, and experienced. Just review past threads on this subject over past years.....
Many others can also attest to that, and NY Girl I am surprised that you are so quick to rule out the tx as the cause of the poster's symptoms. "
It's more the fact that there have been at least ten new posts on anti-big and I hate interferon it killed me in the past few days by people who have posted ONCE and never returned almost as if spamming the forum with the post "don't do treatment do some alternative tx instead" that leads me to wonder what is really going on.
Is it one person who has some serious grudge? Is it someone / group promoting something else like Juicing? What is the end game of this strange new group?
A few people have emailed me asking the same questions - so if you notice this person is of that ilk...I'm starting to think the issue is quite more mental than anything else.
After all the interferon we've done DD...have you ever seen this many anti folks crawling out of the woodwork like this before? Where are the "why are my eye lashes so long", "will my hair fall out" "what can I do about the itch" posts that usually are the first time a person posts?
Jez I actually prefer the "it bounced off the floor and into my mouth do I have hepC" posts at this point. Anyone seriously worried about doing treatment coming here for the first time would think death is a welcome thing after taking interferon you know?
I just don't buy it at all. Not one bit. There's just way too many.
(See haven't fully lost my brain to the brain fog ;)
I too finished tx in March of 2008. For a good year and a half after tx I had side effects. I had recurring bouts of Plueresy (inflamation of the lining of the lungs) and Pericarditis (inflamation of the lining of the heart). Every time I would start jogging I would get it within a few weeks. The Doctors were telling me that it just reoccurs in some people and they don't know why.
I had blood tests from many spcialists until one of them did a test called "hsCRP" (high sensitivity C reactive protein) it is a marker of the amount of inflamation going on in the body. Normal is below 3. Mine was 25 (very high).
I read everything I could on inflamation and found that excercise (which I already did) and diet affects inflamation. To make a long story short I read a book by Dean Ornish about reversing heart desease that pushes a vegetarian diet. It reduces inflamation greatly.
I have been on this vegetarian diet for 6 months and jogging 5 days a week without any symtoms whatsoever. After I got off of the Interferon I felt 10 years older. Now I feel 10 years younger. I really mean it. I don't know if this is your problem but it worked for me. I feel better than I have in years. Don't forget that one of the ways that Interferon revs up your immune system is to increase inflamation. In some of us it doesn't subside after treatment. I believe that this can lead to a whole host of annoying problems in our bodies like what I had along with fibromylagia,arthritis etc.
I do understand here you are coming from. I had not been viewing the Forum much recently, and took this thread as an isolated comment. I also cannot stand posters who have hidden agendas, or who are pushing alternatives to tx, since none really work at all....they might be nice for your general health...but none get rid of HCV! EVER!!! So I do understand why you were quick to cut off the anti-interferon commentaries.
On the other hand, as I stated, those who are on the 'up and up' about post-tx problems need more serious research, and to be taken credibly by their doctors...since I think it is most important to find ways to help reverse some of these chronic, tx-induced problems. And, it probably is only a sub-set of treaters who suffer, but the actual numbers might be pretty high overall...even if not a majority percentage of treaters. I think the doctors are a little like investment brokers, and like to see only the 'rosy' side of their consulting advice, and regimens....since nobody wants to feel they may have allowed harm to be caused, and also, nobody wants to discourage business that might be lining up at the door.....so it is easy for doctors to 'poo-poo' the complaints of those who really do have a post-tx, interferon induced set of symptoms, or even illnesses, such as auto-immunity, or cardio-vascular issues, ... I think the 'science' needs to get to the bottom of all of this....while not discouraging those that should treat. Like I said, I would do it all over again, and my two tx'es were 'hellish'...but doable. I believe in the goal, and the hoped-for outcome...but I also have to admit there may well be consequences for some of us. That's what we need to help our medical community to address. I am sure there are ways to mitigate the after-effects....but it won't happen until the medical establishemnt opens both eyes, and acknowledges the problems that are out there.
I hope you are doing well, and feeling better every month...year.... Best wishes to you for the new year...
Sorry to hear you’re still feeling the effects of treatment and hope they will subside in the coming months and if I may be a bit intrusive here; have you taken any other meds during treatment besides interferon and riba and are you or have been on any other medication since ending treatment?
Hi, I don't post here on a regular basis. At the moment this is because I'm fighting some other battles in the real world and sumy don't have a lot of time. I posted on this thread and I did so with no agenda. The story I relayed about my cousin is true 100% so unfortunitely. I've stated that I never intend to take interferon but let me qualify that by saying I have the utmost respect for anyone who is brave enough to do so. Not only has my cousins experience put me off but the possibility of depression is something I'm not willing to go through. I am medically trained and from experience people who are medicated for depression rarely come off the meds completely. In my opinion the risk of loosing myself to meds for depression is to large a price to pay. Also one more point. Interferon is classed as a toxic drug, so I wouldn't be to quick to rule out long term serious sides. Also some people here seem to rush to damn anyone who posts here who is not to keen on interferon or who doesn't have some amazing tx success story, as having a motive other than sharing there story or seeking advice. I'm sure there are such people posting but if this is possibe, so it is also possible that there people posting that pro interferon for the purpose of pushing it on people, no? As for people posting and not reappearing well, I've noticed that unless people post on here and say something that a certain few want to here they are ridiculed and accused of having some other motive, so if this happens maybe these posters don't come back cos they feel they're been attacked because of their views. So I wouldn't blame them for not coming back, would u? It would be mote constructive to post a reply if you feel you can help or answer and if you can't, then don't make comments accusing and damning. You might find people will come round to your point of view if you don't redicule them.
I've got a lot of the same issues, but most of mine developed mcuh more severally a few months after treatment. Not sure why. My best guess is withdrawal from other treatment drugs may have triggered things. Getting off several helper drugs that are addictive has caused a fire storm it seems.
My other suggestion is you get checked by an endocrinologist.
you've already been to a neurologist. If he did his job I'm sure he checked you eyes, nerves and labs and ruled on encephalopathy. Long term use of drug can produce symptoms you are having, but so can coming off of them.
An endocrine dysfunction can also lead to what you are describing. Having glands that don't work can lead to every symptom you are describing.
Unfortunately there's a lot of overlap. For instance pancreas and parathyroid dysfunction can cause tremors, thyroid and pituitary can cause memory...and on it goes. Since HCV causes overall lowering of hormone secretion, since they have tied HCV to loss of function in each of the endocrine glands, the only way to really know where you stand is to have a competant endocrinologist do a complete work up.
This isn't entirely easy. Research shows for instance that half of HCV patients have low pituitary function, but it is very rare in general populace...get your endo to do a simple IGF-1 bllod test to screen you...get your thyroid tested, your parathyroid (calcium level,) your fasting insulin and glucose, and your IGF...just for starters...I'd do cortisol also. mb
Bobby...Hey thanks for the heads up on hsCRP reactive, I forgot about that...
been having tachycardia lately...started after exercise...2 months ago...so bad now I almost went into Er last night...well...now I'll know what test to ask for...my idiot GP thought I have vertigo...since when does vertigo cause tachycardia...sheesh.
you may be on to something...been thinking that 4 days...like who gets this and their first question is that...oh duh. Not saying everyone is...but I think maybe our old OCD friends make have stuck their heads in here again. They are never particularly subtle are they.. Can't hep yerselves eh dudes? (pardon the pun)
Interferon and Riba affects everyone differently. I have no doubt that some people have long term, and possibly permanent, damage as a result of treatment. A friend of mine does have long term memory loss, fatigue and depression post-treatment. Another friend feels as if he's never had the disease.
I was warned by my doctor that I may feel better or, worse, after treatment, whether I cleared or not. I was also warned that my hepatitis may improve or worsen, even if the virus cleared. There are serious risks to this treatment. I hope for better treatment in both the humane and the medical senses. Until so, I think it's important that one understands ALL the risks before going for it. I think part of the suffering for these people is not understanding what's happening to them and not being validated by the medical and drug industries.
I just wanted to let people know that I took this powerful medications of pegasys and ribavirin. The treatment was suppose to be a 12 month treatment with a 50% cure rate, and my treatment lasted 6 month because I had complication with anemia during treatment but the end result was that the treatment was successful and the diease hep C went into remission. My current issues now are fibromyalgia, hypothyroidism, major depression, anxiety, chronic fatigue syndrome. I believe if anyone is suffering after treatment they should go see a Rheumatologist or primary care Doctor to rule out and get a diagnoses or a referral to a Specialist to any of the following symptoms of fatigue, trouble consideration, irritability, brain fog, joint pain, muscular pain, stiffness in joints or muscles, or any issues that started after treatment. Also, if anyone looks up on-line on side effects of ribravirin and pegasys they will find a list of potential long-term side effects of taking this medication the list is very long. DON'T GIVE UP AND KEEP ASKING QUESTIONS.
hi-Im know where you're at - I've finally been diagnosed with Post Interferon Syndrome-it's like M.E. and I have also developed fibromyalgia-I did 6months treatment and successfully completed it 6 years ago this week.My problems started 3 months post treatment,my balance went first then extreme chronic fatigue then pain all over then food chemical and temperature intolerances,can't sleep.numb hands and feet,tingling stabbing or burning sensation in my skin,cognitive probs-number and word dyslexia,short term memory,irritable bowel,can't sit up for long.I'd suggest you ask to see a neurologist for starters and tell your consultant Post Interferon Syndrome does exist and it looks like M.E.
Wishing you luck with an early diagnosis so you can learn to manage your symptoms and make life more bearable.
Not everybody gets these side effects but a significant number do-have a look at the hep c trust uk's post treatment survey xxx
I just explained your situation to my wife and she said that it may be very possible that you have fibromyalgia. She got it years ago after having mono and apparently it is common after you have had an illness. You may research that as it may be a good suggestion. There is a lot of research on it and some medications although some doctors claim that it does not exist. We have researched it extensively and I am convinced that it exists and the symptoms are exactly as you have explained and could be as a result of the treatment. Something to consider....
Its my first time posting on any blog. I got here because I googled side effects from interferon and ribivirin because I am having very similar side effects to melinsday. I am a 52 year old male and I was on both for 11 months and was cured of hep c. No virus for 4 years now. That "brain fog", memory loss, spacial problems, dyslexia and faulty word formation are all symptoms that I have experienced that just don't seem to go away. I was convinced it was related to my treatment as it came up during my treatment and slowly got worse after for a few months. I never had any of these before interferon/ribivin. My liver doc has no knowlege of these side effects from the treatment. I have begun to think that he might be just covering his butt in case there might be some liability there. I am relieved to know that I am not alone in this. Thank you all for posting on this.
I have Chronic Hep C I have been on Treatment 4 or 5 times since 1997, the last time was in 2007, It did not cure me but it did save my life, I have lived to see my 9 Grand kids born, the oldest is 15 now and youngest 5. I have had problems after the meds but not like before. Now I have started the triple med treatment in the hopes of keeping my stage 3 fibrosis from going to 4. I was diagnosed in 1995 at the University of Washington after other Dr.s telling me for 5 years I had Lupus. I will take the years with my kids & grand kids if I can and do the treatment one more time. I think sometimes the other after effects are caused by other health problems not just the meds or the Hep. I blamed every pain and problem on the Hep C and found out I had other things too like other people, like Gall Bladder & Fibramialgia ect.ect. but I am still here and making the best out of what I have. Hope all do well
You describe what I went through after my first therapy, I was in interferon 3x a week with riba, I NEVER got back to normal. I still have the virus.
That was back in 1999-2000 or so. I have been on several therapies since, no success. I am starting to get back to normal now.
What worked for me.....
4000 IU/vitamin D a day for about a month, then 1000 IU/day. Helped a lot.
But recently, 1000 mcg (micrograms) Vitamin B12 a day.
B12 is essential for proper brain and nerve function. I do not know how or why doctors have not figured this out yet, Vitamin B12 is stored in the liver, and proper liver function is essential for proper vitamin D metabolism.
I suspect treatment may deplete the store of B12 and it may take some high strength supplements to restore. I dunno but it worked for me. Maybe I am one of those who have problem absorbing it from diet.
You can WIKI "vitamin B12" and see for yourself. It describes many of my symptoms (clumsiness, memory, concentration, reduced mental capacity - math, reading...).
I began treatment,double dose, 8 weeks ago. My Hep C wea not detected in my blood and my viral load was 0 on my 6th week. I absolutely hate being on these meds! I have brain fog as well and am awful tired, Lately, I have been experiencing stomach pain and extreme lower back pain. I don't understand why i still have to take the meds if the virus is gone. I don't my doc I was having joint pain and stomach pain and he said, Oh the interferon causes flu like symptoms, you'll be fine. Then he left the room and told me to come back in 2 months. I felt good in the beginning, but after weeks went by starting feeling awful going into 3rd month of therapy.
You're not the only one , I have been having ED issues , energy issues and simply haven't felt right since I finished the treatment in 2011 . I am suspicious of having developed a heart condition , though I haven't had it confirmed I have the harbingers including ED . I also have shortness of breath and fatigue to go along with it which is unexpected as I have exercised , ran , swam etc most of my life , I'm also a vegetarian . I'm going to get every test I can and try and figure it out , but I am more than a little suspicious of the treatment . While I am currently 63 I have always kept fit and the onset timing is curious .
James, google- HCV SVR relapse after immunosuppression... then- Study HCV particles detected in SVR/ circulating blood, plasma, lymph. Your point blank 'this is the way it is' advise seems extremely dangerous to those who may be susceptible to relapse.
It's bloody awful stuff this treatment!
I finished (successfully) a week before Christmas 2012. It really was the most physically, emotionally and mentally challenging time of my life, but at the same time I also learnt so much about myself and how strong I could be.
Hang in there!
9 months on I'm still not feeling 100%, but I am feeling a whole lot better than I was during the treatment. My energy levels are very low but I'm trying to get back to my pre treatment fitness and maintain a really healthy diet. I'm still taking mild antidepressants which I started during my treatment, I want to come off them but I'm not interested in going through the pain of the withdrawals at the moment.
As to the antidepressants - your body will know. That is how it worked for me at least. I told my Psych that I was done with them and he said OK and we started slowly halving (or whatever the plan was - actually forget now...) and at that point didnt have any issues coming off the Ads.
I was still on anti-anxiety meds (very low dose) which probably helped but I could use as I wanted so...
Please provide a study detailing people who have achieved SVR and "relapsed" which is pretty much impossible because they could expose themselves to the virus so that's not a relapse. And please provide the links that support your point, it would be a lot faster that me trying to figure out what you are basing this on.
OK I think I might have found what you're basing your post on.
Sustained virological response SVR is defined as undetectable HCV RNA in plasma 6 months after therapy has been discontinued. Relapse or re-emergence of viremia after SVR is rare. We report two patients that relapsed when immune suppressive therapy was given within a few weeks of achieving SVR. Patient 1 received prednisone for bronchitis and patient 2 relapsed soon after immune suppression was started post renal transplantation. These data suggest that the early phase of SVR might be associated with incomplete protective immunity. They suggest that sterilizing immunity with complete elimination of virus is unlikely. The cases also caution against the use of immune suppressive therapy in the immediate aftermath of SVR.
Thanks I had not seen this before. I wonder if this is well known now and taken in account when dealing with simple ailments post treatment within X amount of time. As they said "relapse" is very rare, so rare you can scour the internet and find little support that suggest SVR isn't 99.9% a sure thing. I'm going to dig into this study and email the authors asking them a few questions.
hmmm you sure did spark my curiosity here is what I found, I say that 99.9% b/c you take the number cured and divide it into the number of relapse and % wise very small. But I do stand corrected please read this;
Sustained Virologic Response: Is This Equivalent to Cure of Chronic Hepatitis C?
(this is the conclusion the article cost $35 I bought it feel good about SVR(my own) but ya there seems to be a connection with immune supression and SVR ).
So what can be concluded presently regarding the significance of an SVR? Current data suggest that achieving an SVR almost always signals durable loss of virus and improvement of the associated liver disease, and hence indicates apparent cure. But this may not be universal for as yet unknown reasons. Conceivably, occult HCV infection may remain just that until stressed by an immunosuppressive event. What seems important, in addition to seeking reasons for the con- flicting data, is to define characteristics of persons likely to relapse or develop HCC, who would then warrant frequent virologic and biochemical screening after reaching an SVR in order to begin appropriate management early. For the rest, it seems appropriate to perform virologic and biochemical screening annually, as suggested by others,2 particularly if, at the time of reaching an SVR, there was histologic evidence of advanced fibrosis or cirrhosis.
LEONARD B. SEEFF, M.D.
The Hill Group Bethesda, MD
HEPATOLOGY, February 2013
It's a year & a half later, & i'm sitting here with my hands tingling, dealing with on again off again joint pain (sometimes a wrist, sometimes an ankle, sometimes all over) short lasting (anywhere from a split second to 30 seconds) stabbing pains like someone has stuck me with an icepick. In the last couple of months I have a new one...recurring pain where I did the injections.including Diastasis Recti. PCP told me 'you know, you are getting older". I was using pot for relief (I also did this during treatment at the "off the record" advice of my gastroenterologist), but I now have a job that does random drug tests (non medicinal marijuana state)
If I was to make a guess it would be that the pot greatly alleviated some of the bad side effects of treatment; especially nausea. I have heard from others that pot helps the side effects of just about any kind of treatment not just HCV. Good for you for trying.
CBD tinctures, not THC, I have heard really help in this kind of situation and are legal or at least I understand they have recently become legal. Probably worth checking into if you are being set upon by drug testing in the workplace. I don't know much.....but I do know very little. Good luck to you.
I was reading about sativex - WoW - got some controversy there!!!
Licensing for one and only one Pharma to distribute pure medical marijhuana! Seems like they are taking very controlled growth plants - of course - extracting the pure plant - putting it in spray form and charging a huge amount of money £500 a month as *after all the research - NHS won't be covering this "Legal" Pot!
MS patients are saying it is very effective but cannot afford it! Oh, btw, it does get you stoned!
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