hi folks-just looking around for info re long term side effects of treatment and came across you lot ranting away on your keyboards! I successfully completed 6months tx in april 2007 and am now unable to do very much due to the fatigue,pain and confusion I've suffered since. Just wanted to be added to the list of damaged souls. Have lost a lot of friends to this horrible disease so am very glad to have cleared it but at what cost? I spend 90% of my life in pain with what feels like permanent jet lag would love the medical profession to admit it's caused by the tx but they just bat me back and forth to the gp and various consultants all denying it could possibly be caused by the drugs.It is real and it is caused by the drugs folks! don't let them tell you otherwise.
I have been on the treatment twice both times I didn't clear the virus. I was in a support group the last time and it was really helpful. I had a little jet lag after each treatment but nothing long term. I was up and around doing what I had always done. Now I have a chance at the new meds. Maybe you need to change your diet and exercise.
Whoa,steady now! I don't think you don't get my english humour!
I have finally been diagnosed with post interferon syndrome by my liver consultant so there is no doubt as to why I have gone from a healthy active woman to a housebound wreck.
.I don't think I was well enough informed pre treatment about the possible long term situation. I had had hep c for 20 years but my liver function was good with no fibrosis and I was in very good health-walked 5-10 miles a day and kept a large garden growing my own fruit veg.I have always eaten organic healthy food as I know the effect nutrition can have on both the body and brain.During treatment I continued regular exercise but about 3 months post treatment I felt much worse and have steadily gone downhill from there and now grab whatever life I can,walk when I can,do housework when I can but mostly my life is spent asleep and in pain-I am not the creatrive happy intuitive person I was and I miss me dreadfully.
I don't know if I would still have gone thru tx if I had known the possible trade off in MY SITUATION that's all I'm saying.I think I would have looked at alternative herbal therapies and maintaining my healthy lifestyle.
Hello so sorry for your pain, I have just learned of Post Inf Syndrome. You might want to look at some posts from Double Dose, very interesting info.
I finished 2nd treatment about 5 weeks ago so can't comment however the last time I treated and relapsed I did have problems for 6 months to a year, not sure what was part of the relapse and what was part of the tx.
I am hopeful that this time it worked
There are others here who are years past tx, SVR and still have side effects you might do a search for them.
cheers! yes I'm in total agreement with doubledose and now that this syndrome is officially recognised by the medical profession I feel much happier(and less insane).
5weeks from 2nd tx,well done you-I do hope you've cleared it.I know a number of folk who have successfully completed tx and are good now- it's not everybody who is affected by PIS but there needs to be some research into why some people are affected and not others.Most of my friends have said that after 6months they feel better and after 18months they feel properly better so be gentle with yourself and eat healthy stuff cos tx strips your body of minerals and vitamins and taking a general multi vit and mineral supplement might save you some of the problems I had.
Good luck with it all and above all keep that Positive Mental Attitude! x
My husband went through the 6 month interferon/riba tx and he's been clear now for about 4 years. The only thing that changed is his ability to use any deodorant. He's got only one that does not cause his "pits" to break out into a rash - weird - but is stamina/energy are back as well as his cognitive ability. He was a bit worried about both post tx, but after about a year he was back to normal. Be patient and hopeful. As I like to remind myself...this too shall pass. Dee has good advice...keep that positive mental attitude.
Thanks so much for your kind reply and the great suggestions
I am much better this time than I was the last time. It has not really been long enough for me to know how I will feel this time. Last time it took me 18 months to recover. I am drinking lots of water, walking, trying to play games that help the brain, etc
Good luck to you
Good on you-you're doing all the right things.
My best friend says after about 18 months he was well enough to regularly walk 20miles a day again and he celebrated his 65th birthday last month,he's now 7 years post treatment.
The walking is so good for the head isn't it? I bought a camera and photographed every day-I found it such a useful tool for remembering what I did for 24 weeks! xxx
I was on the rebetron treatment in 2003, and was a partial responder.
I gained a lot of weight after treatment and then within a had numerous other health issues such as recurrent mild depression, high blood pressure and type 2 diabetes. I seemed to have much less physical energy than before treatment.
I've come to realize that these other health problems were NOT the direct result of treatment, but more likely the result of the WEIGHT GAIN after treatment. When I discovered I had high blood pressure and type 2 diabetes in early 2010, I changed my diet and eventually lost 25 pounds. After the weight loss (by the late summer of 2010) my energy increased, my blood pressure was down to normal, and my vague feelings of depression and hopelessness went away.
The treatment does change your metabolism, because during treatment the decreased hemoglobin reduces your energy and you become relatively inactive. After it's over, you don't burn the calories as efficiently as before treatment and you gain weight more easily. It becomes a vicious cycle, the extra weight causes you to become more easily tired and so you are less active, and so you gain more weight. Not burning the calories forces your pancreas to deal with too much glucose and work too hard, so you can develop blood sugar problems.
Being overweight caused those other health problems I thought might be a direct result of the treatment.
Right now I'm on pegatron and ribavirin for 24 weeks. I've learned from the first treatment in 2003 - I must make sure I'm as active as possible after treatment and don't overeat, and to not allow myself gain weight.
Good on you! I dropped 2stone 3 months post treatment as I just had no appetite-5 1/2 years on I've only just got back to a size 10. I wish wish wish I could be more active but the pain and fatigue are so limiting I can rarely walk more than to the front door.
I finished treatment two years ago with no virus detected in my blood. I had no idea before I began treatment the possibility of long term after effects from the interferon-ribavirin drugs. I was told I would feel better after two weeks to two months. I felt better for a few months and then started feeling more and more fatigued and severe chronic pain that was debilitating. I had to drop out of school because it is too hard to concentrate and i dont have enough energy plus the ongoing pain which makes it hard to do anything. I have been diagnosed with fibromyalgia and chronic fatigue syndrome, but two doctors that I have seen told me my health problems are due to the interferon treatment. I am definitely in worse shape after treatment and seem to be getting even worse. I wish I would have better informed myself about permanent side effects. I was told I needed treatment and followed medical advice. I am now dealing with life one day at a time and trying my best to keep a good attitude despite diminished living abilities. I dream of going back to school and going out in the evenings or travelling anywhere. I am not able to take full care of myself at this time and living on disability. I cannot regret what has already taken place, I just wish I had more hope for the future!
i too am dealing with post tx- mainly my hearing and CFS!
since i am a music professional that didn't work out too well....
still looking for the right hearing aids to reclaim my hearing.
all those drugs are oto-toxic, but of course no-one said anything to me- even tho they knew i was in the music biz.
one element that seems common to this PIS is auto immune type symptoms. the drugs really affected my body until i was allergic to myself!
so i think we need to look into auto immune/endocrine systems for some healing/rebuilding ideas, there is a lot more research going on in those fields. that's just my intuition about my status. so lots of good sleep, water, food, gentle workouts, and any positive healing activities. i like to sing and that always helps.
regardless of what "they" did or didn't- it is what it is- and maybe our community will produce some solutions as we grapple with these things?
I totally agree with you.
I've cut alcohol,wheat,meat,dairy and gluten from my diet-and tap water! I'm also taking extra vitamins minerals co enzyme q10 selenium trying to keep as stable as poss. now developing bladder problems muscle spasms for days to add to the list!
We've gotta look ater ourselves folks!
Thanks to all for allowing me to let off steam!
yes I also have been diagnosed with fibromyalgia and chronic fatigue and then the liver consultant said Post Interferon Syndrome is characterised by fatigue,paraesthesia,arthralgia and myalgia which just about covers at all! His covering letter to my GP says-slightly worryingly- we may need to manage each individual symptom as it presents.
It's no life is it.
sometimes i wonder if maybe a part of what many of us go through is a sort of post trauma treatment disorder...i just know mentally tx can put us through a lot...then after tx we want to feel great right away....or at least in a year...at 9 months post tx i'm achy and do have some brain fog..also i had bad acid in my esophagus during tx and now have some trouble with that...but all in all i do feel really good and feel great to have cured hep c....i think most of us that tx have at least some stuff post tx...as far as fatigue goes mine was awful...but i keep pushing myself at work..i can now carry around 32 foot ladders fully extended...but to get there its been months of slowly building up to it..
Because of the very real possibility of long term side effects I encourage everyone to keep exercising throughout treatment. It isn't easy when those meds make you want to do nothing but lie around. But to help our overall body deal with these meds, get them through the system and help make it less likely to suffer these side effects, it's important to keep exercising and eat a healthy diet. Also, massage can help during and after treatment to help relieve muscular tension.
Medical Research Council announces ME/CFS research projects worth £1.6m
by Tony Britton on December 21, 2011
From a UK Medical Research Council press release: embargoed until 00:01am, 21 December 2011
The Medical Research Council (MRC) has awarded more than £1.6m for research into the causes of the debilitating condition chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).
The investment will fund five new projects to investigate the mechanisms and underlying biological processes involved in the illness, which could eventually lead to better diagnosis and the development of more effective treatments.
CFS/ME is a complex and debilitating condition that affects around 250,000 people in the UK , including children. Symptoms include profound physical and mental fatigue, muscle and joint pain, disturbed sleep patterns and concentration and memory problems. The combination and severity of symptoms varies from patient to patient, making it a difficult condition to diagnose and treat.
(visit the above link for the entire article)
I found this in a thread by CS over at Wanderers/hcvsociety
Sorry, i didn't get this into the above post. One of the areas of research is this; (it appeared down further on the page of the link;
Persistent fatigue induced by interferon-alpha: a new immunological model for chronic fatigue syndrome
Principal investigator: Dr Carmine Pariante
Institution: King’s College London
Summary: Researchers will examine the effects of a protein called interferon-alpha (IFN-alpha) on the immune system. IFN-alpha is produced as a protective response to viral infection and is commonly used to treat infections such as hepatitis C. IFN-alpha also induces fatigue and flu-like symptoms in patients, similar to that experienced by patients with CFS/ME. The team will follow patients undergoing IFN-alpha treatment for Hepatitis C over a number of months to define the biological changes that occur in relation to the development of fatigue. Their work could lead to a check-list of blood measures to predict who will develop CFS/ME, as well as identifying new targets for therapy.
I agree on the diet - dairy, white bread, sugar .. inflammatory and make all symptoms of PIS worse, physical and mental.
jerialice - allergic to myself. pretty much sums it up, right?
Too many treating doctors have no idea what risks they expose their patients to giving them these drugs. I could not believe - and I have seen the sentiment voiced from others on these boards - that it could be legal to give a drug that could be so cruel. Really changed my view of modern medicine. Get into a car wreck, have an infection - the docs are great. They put you back together and save your life. Have some chronic ailment (diabetes, high blood pressure, Hep C), too many doctors are just unquestioning drug (poison) dispensing machines, and too many of us are unquestioning recipients.
For those of you in the first year or two of PIS, make sure you get your thyroid checked. Find a doctor who is not enamored with interferon, or find a good doctor who can accept the truth. Maybe get on some anti-depressants. Find a counselor if you can afford it and cry to them. It will help.
Reiki may help a lot with "reordering" the brain, and reviving your "essence," and releiving any sense of despair. I still cannot picture things - ie strings of numbers, a beautiful scene, a face, a room that I am going to remodel, how it will look when it is done - in my brain like i used to, but it at least is working a lot better. I have read and also personally know of other professionals experiencing the same sort of thing.
Good diet helps a lot with the symptoms, and it is something concrete and immediate that you can DO that empowers you and makes you feel better for it. Read "In Defense of Food." Good diet probably has very little to do with the food pyramid we were taught 20 - 30 years ago.
Another book - "Falling Upward" - was recommended to me. It was a very beautiful and powerful book to the end of accepting the loss and damage suffered, and is helpful for anyone suffering a devastating illness of whatever type. "Full Catastrophe Living" is another.
Please know that things will likely get better, too. Orhanedhawk is right exercise is great. When I was at a point where I could barely negotiate stairs from lack of muscular coordination, I would still get on a bike and ride around. It always made me feel better. It helped a lot with the arthritis too. Thank God the lack of coordination has for the most part subsided, although it re-emerges with bad diet.
If interferon combo therapy is your last resort, do it. Until then, whew ...... many folks just change one problem for another just as bad, or wind up still having the first problem plus some more.
post treatment traumatic stress disorder-that's how I felt -agree with you there-felt like my brain was catching up with what my body had just been through-you spend so much focus on getting through the marathon that is treatment,counting away the injection weeks in your own foggy bubble that it's a shock to the system when it's finally over and you still feel unwell for so long and you need to give yourself time and space..Unfortunately some people do develop auto immune issues which can be disabling but other folks have a really positive outcome.I don't feel I'm a risk to anyone else now I've cleared the virus which is a good feeling.
sorry for not replying earlier Trish. pain is in my connective tissue,joints and eyes (they're very dry) I've only been batted between my gp and liver consultant so far but am pushing for further investigations.It's a slow process in rural Wales,it takes 4 weeks to get a gp appointment and at least 20weeks for the consultant's.madness!
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