You know Im out here too. You're not alone.
Are you having side effects from the Interferon? I finished treatment nearly 4 years ago and happy to say the Hep C has been in control but have terrible joint pain and a host of other problems . Was just diagnosed with fibromyalgia (another name). I don't want to sound like a whiner. I just hope to find someone who is having similiar experiences and if there are any studies being done. I've tried talking with my doctors and they evade. My Psychologist is the only one who said that Interferon can have serious life threatening consequences in a very few cases. He has a PHD and because I was suffering from depression during treatment he saw me go from an up-beat slightly depressed 180 lb athletic type to 110 lb physical and mental wreck. I don't want to scare anyone. The chances of this happening to someone else are, according to my therapist "very" low and the treatment has saved many a person to be sure. I'm just one of the un-fortunate ones. So if there is anyone out there who knows of any studies going on concerning Post Interferon Side Effects please post. Thanks, franke566
On your other post I said I am starting tx tomorrow, however, I've had tx 3 different times. I too have joint pain and believe I may have depression but it could be from exhaustion. Pre tx, I was addicted to aerobics, 6/7 days a wk, 2/3 hours a day. I would work out to the point of getting shin splints, lay off for awhile and start right back up, then I tx. Never have gotten back to full time aerobics but I'm not going to give up, just like I won't give up until I get rid of the hideous dragon or they refuse to treat me or I'm gone. Have you ever tried SAM-e? It helps the liver and depression. I think it helped me but I stopped when I found out that I was going to start tx again. If you haven't heard this before, drink as much water as you can, it helps the joints as does glucosamine does too. I prefer the water!
One of my 1st question was did anyone have side affects after completing interferon. I have. Is been over a yar since I completed. My docs have all said he interferon was nasty stuff. My specialist said post tx side affects could last 6 weeks, 6 months or a life time. I was unable to sustain a non detctable reading so all of my issues were for not. Good luck everyone.
Absolutely. I am nearly 4 years Post Treatment and the sides only got worse. Are you going to re-treat. At least you have doctors who are being up-front with you about the possibility of sever on-going side effects. Everyone in my family have lived long productive lives. Befdore the Tx I was one of them-now I am an invalid-alive-barely. Good luck to you. Frank
Just finished 104 weeks one month ago and I feel good - energy returning - neusea gone - no complaints - hope for svr
I am truly happy for you!
Have you found any answers? I am 8 months post tx and the drs told me that depression is making me feel those symptoms, unfortunately I feel those post sides are making me depressed.
I use to feel like I was addicted to working out. I would work out 2 to 3 hours a day 6 days a week. Now I find it hard to have enough energy to get through the day.
I know this is an old post but hoped maybe you found some relief you could share
Are you on an antidepressent they work wonders - 8 months after treatment the interferon should be long gone out of your system so I would look in other areas. An AD could be a lifesaver for you.
I appreciate this post, I thought that the only reason I had side effects was because I relapsed. I was led to believe that the tx exacerbates any illness's or disease that you were going to get anyway and that most of my symptoms were from the HCV which I did not have before tx. I just came from a post of over 400 which has SVR people saying they have side effects from the IFN and Riba damage done to them during tx. Time to reevaluate
Thanks to all who shared. I appreciate hearing that I am not the only one who feels worse after TX than before. It has been two years and I am still working on getting better :)
yup, there is me, I went through the six month therapy with no problems and let me tell you my diagnosis is severe depression, fibromyalgia kicked in along with anxiety, PTSD, and now I take cymbalta (not true that it takes away fibromyalgia) but helps with depression. I take very heavy doses of painkillers (oxycontin) for anxiety (alprazolam) I barely made it to get my B.A. I hurt all the time and get fevers that leave me like I have been through a train wreck with the body aches. Ooooh, those aches I go through are like the ones that hit when one is getting a bad cold, and it just sends me to bed, I have fatigue, no willingness to do anything, just started physical therapy yesterday. Look at it this way, if we had to do it again, I would (the interferon), yes we added years to our life but there is a price to pay. I hope this helps you because your post sounds like me.
I finished my 24 week triple therapy with Incivek, Inteferon and Riba back in April. I was undectible in May and my six month Tida is in November. I am (was) Geno 1 by the way. The only side effects I am having is that I have some brown areas on both calves. During tx I itched there alot and scratched there alot so it could be from that. The patches have subsided but I can still see them, A good tan covers them mostly. I also have some spots on my right rib cage area and and in the liver area. Looks like a dark pigmentation of the skin in about five or six very samll patches. My physician said it was probaly from the bone marrow which the meds acted on. He said don't worry and my PCP said the same thing. Anyone have areas like this? My hemoglobin went up to low normal very fast after tx and my red and white cells are moving towards normal but slowly last time I had blood work in mid June. My energy is back, I am not depressed and I feel pretty good except for being 61, lol. So, thats me. Sorry for those of you that are experiencing bad after effects. I am sure they will improve. Good luck and God Bless.
I did 6 months of interferon tx in 202 and was fortunate to have no detectable virus for last ten years. However, the joint aches-leg aches I have had, that started during tx and never subsided, have been far more debilitating than HCV or the tx itself. I have lost the last ten years and am battling SSA . I would never have done tx had I known what would happen to me.
I am sorry that you are having these problems.
Have you seen a good Rheumatologist at a large medical facility, such as a university medical center? A competent Rheumatologist should thoroughly examine you and test you for all autoimmune disorders as well as other rheumatological disorders. Perhaps the Rheumatologist would also refer you to other appropriate specialist.
I recently saw a Rheumatologist who examined me and tested me for multiple autoimmune disorders. I was diagnosed with Sjogren's Disease, which I actually had before treatment but did not know it. I am now on Plaquenil and am already seeing an improvement in my symptoms.
MedHelp has a new Hepatitis C: Post Treatment Issues forum. I would suggest going there to read what has been posted so far and to ask questions.
hi,yes,7years post 6months (successful) treatment still having problems,fatigue,joint bone and tendon pain(fibromyalgia)dizziness,am extremely forgetful,have slowed and jumbled thought processes,weight loss,permanent swollen glands sore throat and hoarse voice,low grade fever-always freezing cold or sweating,dry eyes and mouth,food/chemical/alcohol intolerances,anxiety,tinnitus,periphal neuropathy and I only sleep for 3 hours at a time.I have been diagnosed with Post Interferon Syndrome.
I wasn't aware that there is an actual condition identified as Post Interferon Syndrome; which field of medicine has taken this under their wing (i.e., what type of doctor would one see)? I saw a rheumatologist who verbally acknowledged these issues as due to HCV, but not to the interferon tx, and did not offer any course of tx to address my issues. Thanks
(FFH wrote)" I saw a rheumatologist who verbally acknowledged these issues as due to HCV, but not to the interferon tx, and did not offer any course of tx to address my issues."
I'm curious, what type of tests were performed which clearly differentiated that damage was due to HCV and NOT treatment for HCV?
I have not been aware that such tests exist.
I'm not challenging you, It's more like challenging the doctor or the notion, and I'm not even really challenging. If such tests exist it would be nice to know what they are, and how they differentiate the damage caused from 2 possible sources.
In one of the longer HCV post TX threads I recall posting some sort of link to suggest that Post Interferon Syndrome (PIS) may be a "syndrome". That means it is something that exists that modern medicine has not yet been able to prove or test for, and yet there is ample evidence that it may exist.....
Kind of like HCV...... (previously referred to as non-A, Non-B hepatitis) They could see that it existed, that it wasn't other distinct diseases, but until 89-90 they did not have a PCR which confirmed it's existence.
It seems like for many years I have seen people who complain about such symptoms and yet their labs all look fine, according to doctors. They seem to defy diagnosis.
IMHO it may be that this post TX issues may not just be one, but the linkage of a few issues, possibly separate distinct issues, which manifest differently in individuals. It may be like untangling drug interactions, it's hard to know specifically which drug is causing what, coupled with vitamin/mineral deficiencies, prior existing conditions, etc.
Most doctors are totally unaware of these post TX issues...... and therefore perhaps very naive. I think they just guess and most of us are not possessing evidence to argue with them.
Many times the response is..... just wait it out, you'll improve in time.
So my question is...... would this be an acceptable answer for a broken bone, an infection, severe depression, or condition which may threaten our ability to work or participate as husbands, wives, workers or productive members of a community?
I think people have to push back a little to get a better quality response from the doctors.
I'm just responding with a notion..... not studies or science. : )
FWIW I have also seen it described as interferon induced fibro or lupus. I think some doctors are pointing causation, but are unable to say exactly what the ailment is.
Hello Willy50, regarding your comment: (FFH wrote)" I saw a rheumatologist who verbally acknowledged these issues as due to HCV, but not to the interferon tx, and did not offer any course of tx to address my issues."
I'm curious, what type of tests were performed which clearly differentiated that damage was due to HCV and NOT treatment for HCV?
I have not been aware that such tests exist.
I think the operative word in what I wrote about the rheumatologist's acknowledgement was "verbally acknowledged" (i.e., nothing regarding HCV was written in any assessment). I think there are some doctors who have seen enough to make this assumption on their own, but for some reason the medical field as a whole does not seem to want to acknowledge the damage...either of HCV or Interferon.
No, there were no tests "which clearly differentiated that damage was due to HCV and NOT treatment for HCV" that led the doctor to this verbal assessment; I assume she made it from my history, a history she sees over and over in others with HCV and interferon. For all I know she was holding back her thoughts on interferon damage as well.
Many people have their HCV diagnosed as a result of going to the doctor for their symptoms that end up being diagnosed as fibromyalgia, vasculitis, etc., and it is unbelievable that the doctor will always say it has nothing to do with the HCV.
It's also curious for me that doctors who have led clinical studies for HCV as a big part of their medical careers do not acknowledge this damage as due to HCV or the tx.
Having my debilitating symptoms pawned off as fibromyalgia and nothing to do with my HVC at the Mayo Clinic MN in 2003 prevented my decision to treat. I was not encouraged to treat either. Knowing what I know now I would not have waited 7 or so years.
But all I tell myself is that "it is what it is"...no going back. I just keep hoping to hang onto my post tx svr status.
It's interesting to simply compare notes, even where we have only our own situations and no real data or few studies.
I'm also aware of the opposite situation, such as you noted..... people who went to doctors with these symptoms and the HCV diagnosis was overlooked.
One friend was sick for a decade after seeing many doctors..... finally she went to an acupuncturist who told her on the first visit that something was wrong with her liver.
....And it turned out to be HCV,
My example was that I applied for life insurance and has a subsequent medical....which I barely passed due to slightly elevated liver enzymes. I (ignorant as I was at that time) suspected sexual transmission.......
The doctor argued with my concerns, did an antibody test and then failed to notify me when the elisa test turned up HCV reactive.
I just see plenty of example to make me question whether doctors *always* know best. I think it is the reason that many in this forum really push hard to get people to see the best doctors, such as hepatologists..
On that note, it is also a good reason to better inform ourselves about the disease, and there are a lot of "holes" in what we know about many of these post TX issues.
Have you had comprehensive testing for specific autoimmune disorders? My Rheumatologist at the University ran about 39 tests for autoimmune disorders and the Sjogren's came back positive. I have had Sjogren's for years, long before I was every diagnosed with Hep C, but I never knew I had it until this past August. I had all of the symptoms, though, and have had them for years and years. My docotor said the hep C triggered it. Some of the autoimmune disorders could be causing your symptoms. If you have an autoimmune disorder it would be beneficial to get diagnosed so you can start on treatment for it. I recently started on Plaquenil and am already feeling improvement.
my diagnosis was after many years of negative blood tests and a rheumotologist appt and was finally given by the liver specialist who treated me nearly 5 years post treatment.
The only symptom I had was mild fatigue pre treatment,I had had hcv for 16years. 3 months post treatment I lost 10kilos and the chronic fatigue,balance problems,joint pains,neuropathy etc started there. I eat very healthily,take supplements and do not drink-I have developed an intolerance anyway. I've read that it could be a lupus like syndrome too but it is similar to ME/CFS in many ways.I know that my liver specialist quoted 4% of his patients being left with these life limiting side effects.
I, like your friend, was first 'diagnosed' by an acupuncturist/TCM practitioner, back in the 1980s.
'Liver fire' is sort of a default diagnosis for American acupuncturists to work from, since American diet and sedentary lifestyle generally manifest in tongue and pulse diagnoses consistent with the TCM syndrome of 'Liver Fire'. I, however, was told I had 'true' Liver fire and there was something definitely going on in my liver. It was another five years before my family doctor paid attention to my consistently mildly elevated ALT/AST and I was diagnosed with Non-A / Non-B.
Thanks for your input. I do my best to work with my doc. When she sees something off in my blood tests she sends me off to the specialist. I never seem to get anywhere and numerous debilitating symptoms persist. I guess I should have requested the 39 item panel when I saw the rhuematologist, but I didn't even know to ask. Isn't that their job? I can't believe my outward symptoms don't warrent further tests. I assume these docs will do what they need to do, and maybe I am wrong about that.
I looked up Sjogren's and yes I have all of those symptoms and more. I guess I just don't know how to advocate for myself and with the physical disabilities and fatigue it is so difficult to even get to these doctor appointments. I see my primary physician today...we will talk some more.
I totally fell apart during tx and then more after tx, the interferon must set something off? One does not go from highly active to not moving within 6 mos without something happening, and what it is, no one seems to know.
How does the Plaquenil work for you, I mean what symptoms does it address? Maybe we should switch to personal messages on this rather than discuss in this thread? Either way, I hope to hear back from you about the Plaquenil. Thanks.
Plaquenil / Hydroxychloroquine
I am 4 years post interferon tx . I have most of the same symptoms as mentioned here. I felt bad on interferon and never recovered after treatment. I have been to just about every kind of doctor you can think of. Most Dr’s have no idea where to start. Eventually I went to a clinic in LA that specializes in fatigue. They diagonosied me with Lyme. I did test positive for Lyme and another tick borne diesease with Igenex labrotory. I have since switched doctors to a Lyme specialist. They feel that I had Lyme prior to tx but my body was able to fight it off. Since tx I can’t fight it and it has taken over. Besides be hard to find a doctor to treat you it is VERY expensive. My insurance only covers a small portion.
One of the first treatments was Plaquenil ( which is also called Hydroxychloroquine) , I am also currently on it. I also have been on many other anti-biotics. A lot of the time I do multiple types of antibiotics at the same time. I have been treating this for about 2 years. If you read the symptoms of Lyme they match most of that which you have mentioned. As for me some days I feel OK but most days I don’t.
I’m not positive that what I have is Lyme. I know I was feeling great up to the time I started Interferon/ Ribavirin and I wished I had never done it. I would do anything to feel good again.
Yes, it is the doctor's job to order the appropriate tests. And they should know what to order. I just think not all doctors are created equal. Plus, my main reason for going to the Rheumatologist was to see if I had any autoimmune disorder and I told her that. Of course i told her my history too and all of my symptoms, but I specifically asked if Hepatitis C has left me with any autoimmune disorders. Well, she was thorough, both in taking my history and her exam.
The thing is, sometimes the tests have not yet become positive in a person. Only certain percentages of people with specific disorders are actually positive for some of the specific antibodies. So a person can have Sjogrens, for instance, but not have positive Sjogren's antibodies. So a negative test does not mean the person does not have the disease. The Rheumatologist has to go by other things such as the history and the symptoms as well as the results of several tests in order to piece the puzzle together and figure out which disorders the person may have. In addition, it is important to periodically test people because they could be negative on specific tests one year but positive a year or two later.
If a person has a predisposition to autoimmune disorders, the Hepatitis C itself can trigger the autoimmune disorder. The Interferon can also trigger the autoimmune disorder. In my case, I had all of the symptoms prior to Hep C diagnosis and prior to Hep C treatment. So I know it was the Hep C that triggered mine. However, in your case, it is possible that the Hep C triggered a subclinical autoimmune disorder (no noticeable symptoms) or that the Interferon triggered a autoimmune disorder. Interferon can trigger autoimmune problems. Then it is a matter of figuring out which one it is. Keep in mind that autoimmune disorders like company. They don't like to travel alone. So a person often is dealing with more than 1 autoimmune disorder. It is up to the doctors to figure out which one or which ones a person has.
Autoimmune disorders can be extremely debilitating and they can have severe complications if left untreated. That is why it is so important for Rheumatologists and other doctors to take people seriously and figure out what they have. Early treatment is imperative in order to avoid debilitating disease progression and other severe complications.
I think every person with post treatment health issues, should be very assertive and really push their doctors to find out exactly what is wrong with them so they can get treated. If necessary, one may have to keep seeing doctors until one of them figures out what is wrong. I do think the best doctors are going to be found at university affiliated medical centers. Of course there are good doctors in other areas and places, but I do think many/most of the really competent, cutting edge, and interested doctors are concentrated at university affiliated medical centers.
The Plaquenil takes a while to work up to full effect, usually several months. However, within 2 weeks of taking it, it had already gotten rid of the symptoms I had from interstitial cystits. That truly affects my quality of life (as well as my health). I have now taken it for almost 4 weeks (4 weeks tomorrow) and I am noticing my knees work better, stronger, less stiff, less pain. I can tell by how well I can go up and down stairs and how well I can rise from a sitting position in a chair. It is not perfect, by any means, but I have improved some. My mouth is considerably less dry than it was prior to starting the Plaquenil. So I am noticing some differences.
Please feel free to PM me if there are other things you wish to discuss or know.
I totally agree with you that we should be more assertive with the medical profession,the problem is we're now so fatigued some of us can't manage the short trips to the gp never mind the long trips to the rheumo!
It's known that autoimmunity issues can be kickstarted by both hcv and interferon and as interferon signatures are high in both lupus and chronic fatigue syndrome it makes sense to me that our natural interferon has been put out of kiltre and that's the cause of the problems but how to reset it? that is the question!