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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.
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Avatar universal
Thanks for your post ponyshel and we wish you to recover step by step as we try to do for my wife. Actuallt, Actually, we are focusing on coenzyme Q10. I made a review on Medline about the benefical effects of Q10 and some of them can focus on the same symptoms as what you or my wife have. In a recent paper, a Spanish team observed that Q10 blood distribution was altered in patients with fibromyalgia (Cordero et al, Clin Biochem. 2009 May;42(7-8):732-5). Fibromyalgia is often observed as a consequence of IFN treatment (I read in MedHelp some posts of people suffering from it). But is it a cause or a consequence ? Nobody knows today. Moerover, Q10 has shown anti-inflammatory effects on some markers which are the same involved in the brain processus described in the last papers I sent you. Q10 is not water soluble and must be taken as emulsion or must be taken during meals (fats from food helps to improve its bioavailability, there are some studies on it). The effective amount is around 100 mg a day, but must be taken during a long period (several months). So, we will try Q10 as soon as I got a few of it. We know that it is not the only solution (as no ingredient, plant or molecule alone will be the solution), but it is one of the tracks to follow to break this vicious circle of pain-exhaustion-fainting. We will be absent one month, but will tell you if this Q10 was a good adjuvent or not.

Kinds regards from France
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thanks for your experiences, i too am experiencing long term side effects of interferon/ribavirin treatment,   2 yrs later:  i live in france and dont speak the language too well to even try to discuss it with the medical fraternity:  i now see what i presently experience is the same for others i dont fel so confused like its my imagination and i should feel better  than i do:   muscle pain, joint pain, depression:  it helps to know this is how it is for others: i chose to do treatment after few years of avoiding aware of the "results":  but i wanted to live: now i have cleared the virus, one wants to be able to do more, and wish that the doctors would say this is happening:   but i dont regret the decision i took, it is all a learning experience on the great journey of life and death:
regards karen
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I have searched far and wide for any info on long term, post SVR, symptoms of the peg-interferon Ribavarin cocktail that I took for my genotype 2 HCV in 2001 and this is the only place I have found. I have never felt better than I did before treatment. It is hard to tell whether I returned to pretreatment Quality of Life because you certainly do feel better after stopping the treatment when compared to during treatment but to remember how that compares to pretreatment is next to impossible. I did OK post Tx for several years ( I wasn't horrible preTx). But my fatigue has steadily increased in the past 5 years and now is at debilitating levels. My fingers, hands toes and feet hurt like %^&*(Joints). This started with my fingers and hands during treatment and I have virtually given up on my guitars (played since 75) but could live with the hand problems. About two years ago it started to hit my feet. Starting with the small joints of the toes and rapidly spreading through my feet to my ankles until it is now difficult to stand in the morning. Rheumatologist says nothing’s wrong. Liver Doc says I'm cured. SS and LTD insurance say's I'm Fu%$ed.  Anybody know of a class action attorney or disability attorney that will take up our cause? Individually we are powerless, as a group we may have some clout. I actually feel like I am on the treatment now, although I ended treatment 8 years ago.
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just wish to share that the thing that helped me most with the post treatment side effects  of depression and bone/muscle pain  and memory loss has actually been drinking infusion of nettles;  pick stinging nettles  dry them or use fresh,  small handful in flask of boiling water and drink during the day, every day: it contains the b complex vits and others:  i know it seems a bit simple,  but from all the stuff that ive tried,  it has really helped:  
along with a great physiotherapist  who said my muscles jept spasming  rather than arthritis as diagnosed by doc:   i am in much less pain  and can get up and move more freely again:
though i still have days when it feels like i cant function mentally, i am detrmined that i improve as i dont give up:even when i don't feel like it!!!!
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Thank Goodness I found this site and this subject. I've had HCV, geno 2b since 1965 via a blood transfusion. Was diagnosed in December, 2004 and had biopsy in April, 2005. Since I was doing so well - grade 2, stage 1 - with normal range ALT and AST, my original medical team in Houston decided (and agreed with me) that I not treat but instead focus on quality of life rather than quantity. I continued with my very physical life - landscaping, light construction, etc. - with some down time for rest.

That was 5 years ago, I am pushing 67 years old, and I'm having lots more weak periods, stomach problems and right upper chest aches now. So, I've been considering tx but have been, well, scared of long term after affects. After all, I'm no spring chicken anymore anyway. But I'm tired of not being able to eat everything that I want to eat because my liver is doing less than a competent job in the digestive system.

This forum has allowed me to made the decision to keep on keeping on without tx. I see others my age who do not have hcv in a lot worse shape than I. Plus, I'm a single woman with grown children and relatives living miles and miles away. I've always been highly independent and tx would impact my life when I have no real moral support.

So, to make a long message short. THANKS TO ALL FOR YOUR COMMENTS.

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if you can hang out longer   the better  a little birdy told me there are much better treatments in the pipeline,  that are under the testing phase  or whatever it is the pharmaceutical companies have to do, to get it acceptable to the health and governmental agencies, that do not atom bomb ones system in the way interferon does, its always a tuf decision,  whhat path to take:    good luck
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Thanks so much for your comment.
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394687 tn?1290924440
I have not been online very much but this post really intrigued me. It has been a year and 1/2 since my treat (was here with Lady Lauri and the rest of the clan - amen to this site! Could never of done it without them - I went in with severe RA and came out with the entire gambet (fibro, neuralgia, chronic fatigue etc) If you want a blow by blow of my treat and autoimune please see my journal. (2B - only 13 wk tx - 104 lbs)

I too no longer work due to the sides - but am on disability. There are a few things that have been helping me - I take the Biogenetic Rituxan infusions every 6 months (Enbrel use to work) I take a gambet of vitamins and brain food (Q-10, amenio acids, enzymes, omegas, lipids etc) They seem to help...but the best thing for the fatigue by far is Consortea (an ADHD drug) I split a 36 mg 4 ways and take every 4 hrs. I also take 1/2 darvacet several times a day and 5mg prednisone. And champage seems to really help with the depression (thank god I am SVR) - but yes I do feel worse then pre-tx physically but not mentally...I am so glad it is gone!

I'd like to know more about the needles (Karen) - where do you get them? how much etc.

I had a great job and really miss it but have my horses and a loving family by my side - attitude really is everything.

I am writing my autobiography and live life from day to day. Celebrating even the small stuff which now seems so big (like walking through a store)

Keep us informed on how she is doing OK,

Mikmoe
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i dont know where to get needles these days!!!   but nettles i do,  from the side of the road, they grow more or less anywhere especially where there has been dereliction of buildings,   or in the countryside hedges:
failing that you can buy them often capsule form from a health shop:
pick them before they flower,   when they are a nice light green  rather than old dark green  wear a pair of gloves:  i dry mine so i have a years supply,   just laying them out and covering with newspaper   so air can get at them but not light  a tablespoon of them to one   one and half litre boiling water;  i put in flask and drink throughout the day,   or put a few leaves  fresh or dried into a cuo pour on boiling water leave for 5 mins   flavour if need to   and drink:  hope this is what you meant!!!  and me you were addressing:   but if its needles you want id say try your local pharmacy  ;)
karen
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Dear Mikmoe,

Thank you for your mail. There are so many common points between all your testimonies and what happened to my wife. She, like you, no longer work, as today every common task is like climbing the Everest and needs so many energy from her part. She has written a book, which was edited 2 years ago in France, with pictures and short poetic texts, about her treatment period, to explain her feeling during this long tunnel.
The drugs that you take seems to give you some improvement, but it must be so hard considering side effects (like stomac pain) to take such amount everyday. She is obliged to take antibiotics everyday due to chronic kidney lithiasis and antalgics for headache or kidney stones. Fibromyalgia is not the dominant symptom, but her arterial pressure dropped to 7-8 with txt and never came back, fainting is recurent, exhaustion is daily present, brain fog, and sometimes she experiences breathing apnea and giddiness. But she is extraordinary and has a steel mind, even if we take life day by day.
We hope you a nice week and your body to be less and less like your ennemy,

Best regards,

Melvil



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394687 tn?1290924440
Thanks for your well wishes - one other thing that has helped me is vitamin D suppliments - the treatment really takes it out of you and I had no idea until I had bloodwork done-I have to take 50,000mgs every week now. It really helps with the legs pain and possibly with the fatigue and brain fog - have her check into it.

With every challenge life has thrown at us - some of us take them as opportunities...sounds like she is gifted in that way. Very special the love you have - cherish it.
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Dear Mikkimoe,
Thank you for your advice for vitamin D. We will check. I know that this vitamin can be linked to cognitive functions impairement if deficit. This is a track to follow.  
Kind regards from France
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148588 tn?1465782409
I'm happy to see you are looking into the CoQ10. Though you won't see any spectacular changes in her symptoms, it is something the cells need for their mitochondrial health and as we grow older we are less able to absorb it from natural food sources.
Another supplement I've recently come across is called CerefolinNAC. It is a prescription form of  B vitamin and the glutathione precursor n-acetylcysteine. With this I have noticed improvement in my post-tx symptoms.
Good Luck.
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   NB: the B vitamin and the glutathione precursor n-acetylcysteine. that desrt mentioned are both found in nettles,  just though i would mention that,  cos stinging nettles are free of cost and often easier to digest, if you have to pay for your supplements:  lol karen
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146021 tn?1237208487
I'm sure that reading about the post tx side effects are scary, but being a genotype 2 myself, stage 1 grade 2, I feel our stories are very similar......however I chose to treat.    

I chose not to continue after 16 weeks, but I am SVR. Tx made me feel like my brain was frozen and physically it was very difficult. But I was able to work and I'm so thankful that I'm through with tx and hep c. It's such a relief to not worry about my liver, or contaminating some one else by accident.

Not everyone has long-term side effects post treatment, and I feel horrible for those that are going through such a rough time.

I wonder if they had a genetic predisposition for an auto-immune disease and if the hep c or treatment exacerbated the condition.

I agree, it would be nice to have some answers.
Bug


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250084 tn?1303311035
I apologize for slipping in and out if this discussion, sure you all understand why.

Fibromyalgia is what I have 'self diagnosed' myself with since lack of insurance has hindered much further medical exams, testing. I know whatever I have it is surely stress triggered as the past mth, my muscle pain, issues have been in high, intense mode! I have the Q10 given to me by my acupuncturist and going to start it today!

I have always believed (Bug) that the length of exposure to these drugs is so important in damage to us/some. You did 16 wks ( where I often wish I would have stopped, BTW)
so that shorter exposure may have been why you haven't suffered so much post.
(thats almost a 'duh' , huh? :)  But it still never makes sense, adds up as I did 24 wks, yet some with 48 wks are fine, etc.
I am betting many of us had ...... "a genetic predisposition for an auto-immune disease and if the hep c or treatment exacerbated the condition" , YET....supposedly my Dr., others, do testing beforehand for autoimmune diseases and through out my tx and reductions, he kept saying my blood work wasn't suggesting any?!

Anyone else up there seeing that stress intensifies their symptoms?

LL
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hi melvil and all goodwilling long term side effects concerned,

I feel relieved  not to be the only one after I found this thread. I experience  kidney pain, exhaustion, teeth falling .thyroid upset. A result from,11 months high dose INF riba tx, (gen C1) ; even though tx over 2 years ago .now  virus free.

apparently low blood pressure n exhaustion corelated. Thus if one could rise blood pressure exhaustion may disappear. I know that, on rare occasions , my blood pressure goes up n I feel much better.

No need talking doctors n specialists, without any measurable results from anlysis, (other than blood pressure) they think kidney pains all in my head. God be with us, whatever our faith, cause who else will be? pharma corps weigh on the health system and brainwash all to deny reallity of long term side effects . remember your liver will not heal scars from fibrosis n cirrosis. it will only stop getting worse if you cleared the virus.
keep on searching perhaps  the link between hormonal mess up and liver regeneration at the root of all this.

much love to you all
dennis the menace, france
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146021 tn?1237208487
So glad when you are able to contribute, I know you are suffering mentally and physically now too. BTW, I went through your photo album a few days ago (Sun) and really enjoyed it!:) Glad to hear from you and feel fortunate, so sorry for the never-ending year of pain and suffering you're going through. It just doesn't stop for your family, does it?

When you say your Dr tested you for auto-immune diseases before and during treatment, what kind of tests did he perform? I wasn't lucky enough to have a Dr that involved with my treatment.

I have taken Adderall for my ADHD since 05, and I'm sure that it helps with my ability to stay awake and focused, after all it's a stimulant, but I wonder sometimes if it "hides" fatigue. I forgot to take it last Saturday and ended up taking a 41/2 hour nap in the middle of the day.

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hi guys,
hope your all having a good day, as much as possible,
ive been re reading through the posts and some older ones on other boards/topics  and because i feel so difficult to address my own doctor  to get useful help, with side effects and not really knowing what i should ask him to look or test for: always feels like a brick wall,  "yes dear   just get on with it"  i had a penny drop, of remembering  that having these post sides,  wether pre disposed or not,  that to start trying to treat ewch symptom seperately, isnt really fixing the problem,   some how the whole system needs overhauling   and i guess for that i need to return to other types of treatment such as homeopathy, to somehow try to rebalance the whole system: rather than lots of medications to treat  depression,   muscle aches, brain fog, headaches lethargy and fatigue;  i am clueless as to the state of my liver, because apart from a fibrotest done in 2004: which was stage one:   i do not know the present state of my health:  aprt from what i experience :   so i guess thats going to be my next line of approach:
(just to actually get myself to the doctors or homeopath, is so difficult,  its like i really dont want to face them   its mad)  
till the next rambling moment of thought,  i send you all good thoughts
karen
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Yes ,Stress for sure cause my fibro to be much worse.I also found weather to be a big factor as well. So great to read all your posts.I wish everyone well  .
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