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Avatar universal

Long term side effects of interferon

Dear all,

My wife was treated for her HCV in 2001 with interferon plus ribavirin. She was like a guinea pig and now, 8 years after, she is living with side effects that have never gone : hypotension (around 8), fainding every day, unbearable headaches, kidney pyelonephritis every months, and an exhausting fatigue that keep her in her bed sometimes several days, where she can hardly eat alone. Before that, she was so full of life, making car races, flying planes, being a model for photographes, and photographer herself. All the physicians and experts that she met told her that it was impossible to be due to the Interferon treatment, but before the treatment, all went well. She is so exhausted that she can't fight no more against medical community in order to admit the origin of her symptoms and to push them to try to find a beginnning of solution.
Is there any progress in the comprehension of the cause of these symptoms ? Are there some new treatments that appeared recently to counteract exhaustion and pains ? Do people group themselves in associations to better fight against this disaster ? Would you have some testimonies, books or adresses to advice us in order to be updated in the comprehension of these sides effects and their potential treatments ?
Any information will really be of great help,
With my best regards.
553 Responses
Avatar universal
Although I don't experience the same long term sx as your wife I have little good to say about my post tx sx. I tx'd in 2000 with Inf/Riba combo and can truly say I felt better pre tx. That said, sometimes these questions don't seem to get as many replies as others because, I feel, some folks consider questions concerning long term sx as taboo. I don't know of any tx or groups dedicated to this subject but others in the group may be more helpful. I've learned a lot just by browsing here for years just not much about this. Best of luck to you both.

Speed
Avatar universal
You are not alone, I too suffer from extreme exhaustion and lots of long term side effects.  I agree that it's hard to fight the system but you have to keep trying!  Keep checking with different doctors...........at least that's what I'm doing, it just is NOT normal for an HCV SVR to experience this much fatigue (there must be something else wrong).

You sound like a very caring man and she is lucky to have you.  My best to you and your wife.

Seabean
Avatar universal
Avatar universal
Dear Speed502, Seabean and Trinity4,

Many thanks for the time you take to reply and comment. Encouragment are so important, even after 8 years. We realize that she is not alone in this case, contrary to what doctors used to say, explaining that it was impossible to have IFN side effects many years after the end of the treatment. It is for her like a recognition that, no, it is no a psychological symptom or an absence of will (those who really know her have never had doubts as she has an exceptional mindset). We really understand what you can feel and what you have been through. We will keep you posted with news (hope the best ones),

Warm regards from France
762726 tn?1234712336
Hello from Georgia, I am in the same boat with after effects and it feels like no one wants to really talk about thew problem.I have been looking on the web and it has been some help. You can find hep c groups but a group for those who are clear but feeling side effects.It should be googled. I will look and hopefully.Be able to help us all. I was a law enforcement officer and had to retire due to after effects. I was 54 when diagnosed and had to be at the top of my physical abilities because I was a specialized case officer that was required of me. I was involved with a lot of training of new young officers and was always able to out do them and laugh with them about this old man showing them that they need to be realy strong to do the job they where about to except. But now I am no longer in good health, atlo of weakness and can't keep up for a brisk walk. I have a lot of issues. I was not able to access state help and was abandoned so I went to a clinical trial due to cost of meds, my age dictated the 40% possiability of remission, and was given 4 times the normal meds. My hep c is the type that can't be cured it just goes into remission and can come back later in life. I hpoe and pray for you and your wife, but it is hard to realy understand what is going on if you haven't been there.
545538 tn?1295995617
What type of C do you have? I haven't heard of a type that can't be cured, but I'm relatively new at this.
142354 tn?1228250348
I can honestly say i feel good. TX had its downs but 2 yrs post tx. I feel as good if not better. I am living my life and forgetting about hep c. If you hold on to the tragedy of having contracted a disease which could have killed you. You can never free yourself from the fear of it. TX is hard on everyone. But you need to heal your mind as well as your body. My liver is in better shape since txing. Hep c is on the verge of being just another treatable disease. I feel peoples pain when they tell the story of how hep c and treatment has ruined their lives. I took the tx and glad i did. I felt good before i knew i had hep c and i feel good now that i am free of hep c. That is what i focus on .
Avatar universal
Dear all,

Froghunter, we really sympathize with what happened to you, all the testimonies from you and others people are so closed from what my wife is living. Before she was diagnosed at 38, after a period of tiredness, she was an incredibily dynamic person, flying planes, riding motorbike and race cars. The treatment, six months, was like hell, but she was sure to recover her health and had a lot of project. During that period, she wrote a book that was published after. We she got the results that proved she was clear of virus, side effects were installed (hypotension, exhaustion, faintings, headaches, kidney infections and so on). She thought it was a question of time and was patient. From that moment, she did all efforts to recover, with the same bravery that she has always had in her life. She became a model for photographs, even if some photo sessions were exhausting for her, falling in fainting, and tried to have a "normal" life, but today, eight years after, symptoms are still there and physicians and specialists she met have given up, refusing to link her actual state of health with her previous treatment and failing in searching deeper. She goes on fighting and we will never give up. But today medical research on this real pathology (I mean side-effects from IFN treatment) is peanuts. Yes, she is clear of virus and alive, which is a wonderful news for her and me, but she has another fight to give against her body, administration (which does not recognize this case as due to treatment) and sometimes against the medical people who do not realize the level of suffering she daily bears. I continue to search in scientific papers teams that are working on this topic and all medecines, plants or molecules that could bring an improve for this state and I will let you know all news I will find.
I really agree with you Froghunter when you writte that "it is hard to realy understand what is going on if you haven't been there". We hope to have good news from you and I will post news soon,

Warm regards from France      
Avatar universal
I did a clinical trial in july of 07 ,Albuferon and Ribavirin. I have just returned to work after 21 months off due to sides. I have severe joint and muscle pain as well as fatigue and dont know how long I can keep working, My employer does not understand and neither do my doctors want to admit this. Funny they stopped giving full doses of the Albuferon a month after I finished due to sides. Now they say cant be from treatment.I am very frustrated as I cant get anywhere with docs or job. My wife has been a rock throughout.I wish you all well. Roy,Alberta ,Canada
Avatar universal
Dear Altaroy,

We wish you to recover as soon as possible, having someone strong besides you is something very important. Froghunter wrote that "it is hard to realy understand what is going on if you haven't been there", but love and empathy from a wife or husband is essential, not sufficient, but mandatory to face all these hurdles : fight against suffering, fight againts doctors and administration, fight to keep a job.
Our best to you and your wife.    
Avatar universal
  Thanks for your well wishes. All the best to you and your wife as well. It is very frustrating to try to get through to people that have not been there,everyone tells me well you look good and of course the old well everyone hurts, I do too. I will stay positve and keep on fighting. I am thinking I may have to change careers though as I can not work shift work or run heavy equipment anymore.Night shifts are out of the question ,it is hard enough working half days right now.Take Care and I will keep fighting . :O) Roy
Avatar universal
What you say is quite true, it is very frustrating to have the feeling that some people believe that you are exaggerating your exhaustion, doctors, administrations and some members of the family too. My wife has such a pretty and nice face that she looks in good shape (but with a blood pressure between 6 and 9 !), and sometimes even those who know her well believe that it is only a question of will. They do not understand that exhaustion is an insurmountable barrier, and that with the best will of the world, you can't do more. She worked half-time two years long, but was brought to the emergencies two or three times per week due to fainting. Now, she does not work no more, and this is not at all her favourite situation, she was so full of energy before the treatment that nobody could follow her. But, like you, she keeps fighting, with some periods of less exhaustion, never as before, but enough to be able to go outside and live "normally" during few hours. We keep hope as more and more testimonies like ours will make things happen for medical community to better take this pathology due to medecines side effects into account.  

Warm regards from France      
747988 tn?1396540478
Yes I don't feel as well as I did before the interferon/ribavirin treatment-extreme fatigue,vertigo and muscle/joint pains being the worst side effects-my specialist nurse likes to use the expression "symptomatic" when I ask her about it whatever she may mean by that!!! I completed treatment 'successfully' in 2007.I've been hoping that someone else would come forward regarding side effects from this toxic treatment-there is just no information out there and I agree that the medical profession are not listening to us-I expected my specialist nurse to listen to me and take note but not at all-they don't seem to be interested in any long term feed back-maybe they're scared of what they might have to publish??? Do let us all know how your fight with getting heard goes.We all need to SHOUT A BIT LOUDER!!! xxx
Avatar universal
Thats one i have not heard"symptomatic". I get looked at like it is all in my head. Have been told so by a GP. I had a meeting with the manager at work today and he aske dme if I was getting better. I said no physical work makes me worse and they still dont get it. I am now trying to get an appointment with my specialist to shout louder some more.I wish there was a place we could all "SHOUT AT THE DRUG COMPANIES AND DOCTORS". I have spoke to many others on different sites in the same boat and we all seem to get treated the same.  Getting Frustrated in Alberta.......
Avatar universal
I took my treatment in 1997, and I am still suffering side effects. The treatment was not successful then. Now in addition to the side effects, now I have the symptoms of a much deteriorated liver, so of course life was better before the first treatment, but it is not only the side effects it is the condition of your liver that must be getting worse after so many years (unless you successfully cleared the virus then). Every morning for months I wake up in pain, severe pain, eveywhere, I can barely move, but after a little bit its intensity drops and it keep dropping during the day, and I am able to maintain a very energetic life. I get bouts of fatigue too, and other symptoms. But everyday I am also blessed by so many things, family, friends, that I feels profoundly happy. Much of living depends on us, how you take life. Certainly, some days are dark, but even on those days you must pull yourself out counting your blessings. I am happy and thankful to be alive, and looking forward to enjoy to the maximum every day that remains. And of course will fight to the teeth to make sure I can get the most days I can. Good luck and bright days for you!
Avatar universal

Dear all,

Thank you for your testimonies and answers. Probably medical community is embarrassed because they know or they have doubts about these long term effects, but pharma companies are powerful in this community and, most of all, they have today nothing to propose to recover from this. As they don't want to loose money, they turn a deaf ear to reality. Believe me, the day where these companies will have identified a treatment for side effects of IFN, they will recognize the long term effects as a reality and propose the way to recover from it. This is a cynical attitude we have to face.
I tried to find scientific papers that deal with this subject and they are really not numerous. Just few recent articles claim that there is probably a risk of deleterious effects of IFN on brain, especially in an area named basal ganglia, as IFN will promote pro-inflammatory cytokines likeTNF alpha, which can alter basal ganglia function (Raison et al, Mol Psychiatry. 2008 Jun 3; Majer et al, Brain Behav Immun. 2008 Aug;22(6):870-80).  Briefly, there is a significant flattening of the diurnal ACTH and cortisol slope and increased evening plasma ACTH and cortisol concentrations. Flattening of the cortisol slope and increases in evening cortisol were correlated with increases in depression and fatigue. But these scientists made these observations on subjects during the treatment, which was stopped early and the effects were reversible. I found no study on the long term effect, if they could be reversible and how.  
We are alone facing doctors and drugs companies insincerity, but we are not alone in our fight, as all of us can bring a "stone to the building" as we say in France, contributing with his own experience and that is a lot. I will go on keeping you informed of all we will find as tracks for cause or treatment of this pathology (because it is a iatrogenic pathology) which is so deleterious for those who are victims of it.

All our warm wishes from France    
Avatar universal
I really think that my doctors believe me regarding the fatigue, pain, etc., they just do NOT know what to do for it!!!  I even contacted the company that makes Peg-Intron (which is what I took) and they told me that yes, some people experience these side effects even after treatment.  As my doctor states "may not be the HCV that kills you, but the tx".  Great, now that I've already finished and cleared the virus.  My life is lived each day at a time, just hoping that the next will be better!  It's all we can do, for now:-)
Avatar universal
  Thank-you all for your replies and encouragment. It is nice to know that I am not alone feeling like this. You sometimes wonder if they are right and it is in your head. Keep my chin up and move forward is all we can do. Take Care  :O)  
250084 tn?1303311035
Melvil....Hello, haven't 'met' you as I haven't been able to keep up being back in the 'real' world, websites,business,  family illness .....to be able to be here much lately, but I treated in the same trial as Altaroy, this site was a God send and met many wonderful people here. I'm sorry your wife is dealing with these issues and agree with Seabean, very good husband :)

I am just coming in from a 13 hr. work day and saw this. I have much to add to this, just too exhausted to make sense! Even in reading replies. I do think this subject should be discussed here as well as all pro's, con's of treating. I am 14 mths post tx and life is no where near 'normal', mentally or physically. I'll go into more in the AM. I wanted to ask anyone posting here to please state their Geno type, tx time, doses.

Altaroy, hello also!.....were you Geno 2? As I started that trial in Oct. 07, the last day allowed to start. I drew the SOC tho and did Interferon w/ Riba. Was reduced at week 5, then again at week 11. Remained on reduced doses through the 24 wks. I am dealing with the same issues as you are and also concerned I can not continue with the work I do. I'll post more tomorrow. I wanted to ask all to post their stats in their replies.

Back tomorrow, good to 'meet' you and hello to all!

LL

Avatar universal
  I was Genotype 3, 24 weeks, full 1200 mg dose throughout,which they discontinued a month after I finished.Finished Dec.07. Nice to meet you as well,finding more and more of "us" all the time. Talk to you later    :O)  Roy
747988 tn?1396540478
Yes it seems strange that there is little follow up investigation done by the medical profession or at least that seems to be the way in the UK.I felt like I walked blindfold during tx-no information anywhere-even/especially from my specialist nurse.I never saw my liver consultant at all.The only contact I have with the hospital now is to have a viral lode (sp) test every year-that's when I hear the "symptomatic" term used.Finally this year my brain is not so clogged and I will ask "of what" this time I promise! However that's not til October.
I think we just have to accept that this is how it is and as good as it gets.The virus did a lot of the damage and the tx did some more,some folk suffer long term side effects that the pharm companies would rather not know about.
I hope the weather is good in France,it's damp here on the Welsh side of the border xxx
Avatar universal
  Hi everybody, I went to an internal medicine specialist on friday and he says I have fibromyalgia from my albuferon/riba trial. That explains the fatigue and severe pain. Goona try me on lyrica,if that does not work cymbalta. Tells me only helps one in five. Informed me I may never work full time ,if at all. Any thoughts or sugestions would be appreciated. Thanx and all the best.  Roy,Alberta ,Canada
Avatar universal
I found out I had Hep C about two years ago and decided to under go tx in January with pegalated interferon and ribavarin, wich the manufacturer provided free, due to my income and lack of insurance.  The tx was tolerable but after 7 weeks my WBC count and neutrophils where dangerously low.  My options where to start weekly getting injections from a hematologist or discontinue tx.  I felt fine before tx, but wanted to beat the virus, for many reasons.  Now my liver hurts often,  and I'm worried the tx may have made the virus stronger.  At least I gave it a shot, and I'm sure many of you have had worse experiences.  If anyone would like to share their insight on this with me that would be great.  I haven't even told my family(their in another state) I have hep c, and I've only told two people(besides medical personel). So i've been going through this all alone.
775302 tn?1253104105
I've heard that the liver is a "non complaining" organ in as much as it doesn't have any nerves that feel typical pain but someone on here posted that it is the reason the boipsy didn't hurt. I've had two liver biopsy's and I was in so much pain almost didn't get through the second time. I guess we are all just different in how we experience the disease but it is nice to know there is support and we are not alone, no one should have to go through this alone.
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