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Post Interferon Long Term Side Effects on other sites

Here is a site that I stumbled across today while Googling long term interferon after effects.  I also found several other sites as well, also 'chocked' full of people detailing their horrible experiences after using interferon.  This sure supports what many of us have been saying and experiencing!!  It is quite disturbing to read additional accounts, some even worse than the experiences documented here on our forum.  Here is the link:  (you will have to copy and paste)

http://www.lawyersandsettlements.com/forum/viewtopic.php?t=10


I will bet that sometime soon we will be hearing about these issues in the media.  The sheer volume and severity of the problems will cause this to become an issue that will provoke national media attention....and with very good cause!!!  I just don't think we were really warned of these kinds of long term outcomes.  I know I wasn't.

DoubleDose
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1408194 tn?1281377886
Before taking interferon and ribavarin (Roche's Pegasys Copegasys), I was a busy office manager at a successful structural engineering firm, I ran our own online family business, I traveled regularly, I was active in the community and at my children's schools and activities, I was social and gregarious, physically active, upbeat and generally quite happy and content. I was able to multi task and was energized in large groups if people. I was successful and felt good. After discovery of the hep c virus and recommendations by three gastroentenologists for me to try the treatment I embarked in the worse medical nightmare if my life. Oh yes I'm still, over five years later hep c free after the horrific 48 week treatment but my life has never been the same. I lost my job within months if starting, then I lost my mind. I am now agoraphobic, anxious, have panic disorder, am agonizingly depressed, suffer from bone pain, nerve pain to the point if soft touch hurting me and exhaustion that never ceases. Medications do not seem to help enough that I can feel normal. I go nowhere now. My husband lost his sexy loving  wife, my kids lost their happy healthy mom, my friends lost their copilot and I lost me. This is no kind if life I'd wish on anyone and I am one of the lucky ones. I just pray sometime soon these poisons are removed from the market. Every life is worth saving. Learning to live with hep c would be my choice if I ever had to make it again.  The profit should not be worth these kinds of human costs. What ever happened to compassion and logic. I hope you never have to experience this kind of living death. If you're thinking of the treatment, don't do it. Exhaust every other healthy safe alternative.  Something better will come.  Peace and love be with you.
Helpful - 1
206807 tn?1331936184
“why are we not seeing more class action lawsuits involving interferon?”

I don’t know about everyone else but, I had to sign a waiver before starting tx.
Helpful - 1
1491755 tn?1333201362
Thanks I’ll check it out, never have been quit normal after that.  This sounds funny but I could always jump pretty high (basketball player) post treatment it was gone. Very strange. Also had double cataract surgery (very easy procedure I must say).
Helpful - 0
Avatar universal
I underwent a year of high-dose Interferon and Ribavirin treatment eleven years ago (2006) and I'm still suffering from brain fog, mental confusion, difficulty learning, limited attention.  Life changing.
Helpful - 0
Avatar universal
Joyce , am so sorry you are suffering. I am 2 years post inf/ riba and it is
Quite a fight to regain health. Which treatment did you do and how long post are you.? All best wishes.
Helpful - 0
Avatar universal
Joyce , am so sorry you are suffering. I am 2 years post inf/ riba and it is
Quite a fight to regain health. Which treatment did you do and how long post are you.? All best wishes.
Helpful - 0
317787 tn?1473358451
Thank you for this link, I must have missed it
I appreciate you sharing
Dee
Helpful - 0
747988 tn?1396536878
http://www.news-medical.net/health/Hepatitis-C-treatment-no-benefits-and-possible-harm.aspx
Helpful - 0
253566 tn?1219679699
Since Mayo defines it as a Syndrome (my GP did it years before the Mayo) then each individual symptom must be treated of the syndrome. That is what we have been trying to do.

As everyone knows it is difficult to even get a doc to understand what we are going thru so I have been lucky to find a number of docs in various fields who believe PIS and have been helping me treat.

Chronic Fatigue has been the most difficult one to get the insurance companies to cover. There are a couple of very expensive meds that do help. I was on Vyvanse for a number of years and suddenly cut off. I just won a battle lasting 1.5 years to get back on and am feeling a bit better but the battle took a lot out of me!

I fought a long battle to get 100% disability due to this crazy treatment and finally won! I should not have to prove myself over and over again...
Helpful - 0
317787 tn?1473358451
Hi I was looking for relief from long term sx and came across this that JimJim created, you may have seen before, if not, it is interesting

http://www.medhelp.org/health_pages/Hepatitis/Members-Comment-on-Side-Effects-of-the-Treatment-Drugs-During--After-Treatment-/show/530?cid=64

I believe that people do have long term sx from tx.  I would love to see what people have done to get relief

My best to you
Dee
Helpful - 0
253566 tn?1219679699
You are welcome Dee.

At least The Mayo Clinic is setting some standards in long term sides. They gave us Post-Interferon Syndrome (P.I.S.). Unfortunately unless you are a patient there Mayo is very secretive about what they are doing.

My GP did some of his studies at one of the Mayo Clinics and when we met up I asked about the Mayo and Low Dose Naltrexone (LDN). My GP was sure his old buddies would share what they were doing with PIS and LDN. Nope! They did share that they were investigating LDN and PIS on their patients but would not go into any other details...

Due to the system set up in the USA these research hospitals have to be protective of their research for future gains just like the big pharmas which means they do not look out for those who need care!

Best to all from me as well,
frank
Helpful - 0
Avatar universal
Thanks for the link Dee.  It's a very sad and scary outlook on treatment :(
Helpful - 0
317787 tn?1473358451
Hi this may have been posted at another time.  It seems vaguely familiar, I thought I would post here in case it can help someone

http://books4freedotcom.files.wordpress.com/2011/04/post-tx-survey-report-2010.pdf
Helpful - 0
317787 tn?1473358451
Hi Frank, thank you for the full title and URL, I really appreciate.

Pooh, I am like you, glad that I got to SVR however wishing that there was a provision for people who have long term side effects.
Like Melville's wife and others who have "sleep attacks" that is really bad.
People in pain, etc.
I know of a guy who did the old time tx with copious amounts of interferon, before Peg and he ended up in a psychiatric ward.  When his wife asked why they had not been warned, the doctor said, well...I cured him.  She would have prefered to have had a functioning husband.

I believe that there are long term effects for people after treating.  I think that all they want is an answer a solution, something to hang on to.  I wonder if the inf and riba could have caused severe vitamin deficiencies.  A b12 deficiency can cause symptoms like dementia.  Shoot I myself would like an answer.

My best on everyone on here
Helpful - 0
253566 tn?1219679699
Yes pooh, there is only a two paragraph extract that is free here: http://gut.bmj.com/content/61/12/1647.extract

Unfortunately use of the article (for the full day) is $30 and being on full (and the lowest payment of disability) just cant afford that right now...

btw, it wouldnt allow me to post here and they may be able to follow my cookies, lol.
Helpful - 0
1815939 tn?1377991799
That article was an excellent article, Dee. Thanks for posting that link. I think it brings up a lot of the shortcomings of the way treatment is approached by many clinicians and the need for post-treatment follow-up, referrals (as needed), and care.

I am 43 weeks post treatment and, while I feel significantly better than I felt before treatment, in fact, better than I have felt for 20 years, I do still have some lingering issues from treatment (skin/rash issues, some joint aches that I did not have prior to Tx, and lower extremity edema). If I was presented with the same situation (being diagnosed with hep C) in the future, I would still do treatment, and I am elated that I did treatment and that I attained SVR. However, I still wish there was more recognition that people do have post treatment medical issues and I wish that there was more research into this issue. I also wish that there were doctors who were knowledgeable about post treatment problems and willing to examine and treat people with post treatment issues.

I tried to read your article, Frank, but I could not find one that was free.
Helpful - 0
253566 tn?1219679699
Hi Dee,

I did a google for that article and it came up with a MedSlate article which is a pay for medical publication.

The full title is: "New protease inhibitors and direct-acting antivirals for hepatitis C: interferon's long goodbye." by Geoffrey Dusheiko, Heiner Wedemeyer.

There is a two paragraph extract linked at GUT journal (btw this may also be a UK article?!?).

Not sure if the whole thing was copied here or not... and hope this extra bit helps.

f
Helpful - 0
317787 tn?1473358451
Hi I'm sorry I did not realize it was from UK.
I was trying to find something to help.  Another member on here talked of an article called "Interferon...the Long Goodbye"
I was looking for that when I found the above.

Eric, I really do think it takes at least a year to recover from the tx.  I am happy to hear you no longer have the cramps.  I had those several times a week in the middle of the night.  Thank God they are gone.  So is the cyroglobulinemia.  That was pretty awful as well.

I also would like to see more help for people who are suffering years after tx.  There must be something out there that the medical community could share to help people.  It has been 17 months since I finished triple tx.  I am much improved and thank God for that.
Helpful - 0
Avatar universal
thank you Dee,  i am about 44 weeks post treatment with cirrhosis.  did triple therapy for 48 weeks and was clear at about 25 weeks after treatment.  i experience some of the symptoms discussed in the study including skin issues, and mental and psychological difficulties.  however, not all the effects have been unpleasant.   i no longer experience the nocturnal muscle cramps that i did prior to treatment and the liver pain is gone.
eric
Helpful - 0
5720485 tn?1373563055

Although this report is from UK, at least someone is acknowledging that aftercare after treatment is missing. . .
Helpful - 0
148588 tn?1465778809
Thank you Dee. I wish we could move beyond subjective studies on patients' feelings and actually have a report on things like how Peg-IFN affect the different components of metabolic syndrome or  its effects on RA, MS, and fibro'. These are all easily measured, cheap, standardized tests and the study could be retrospective since a lot of patients have these things monitored anyway. I think it a bit condescending and shows a bias on the part of the study authors when they start talking about 'perceived' symptoms, psychiatric problems, and quality of life.
Helpful - 0
317787 tn?1473358451
Small Study effects after tx

http://www.scribd.com/doc/76198301/Recovery-From-Hepatitis-C-Treatments
Helpful - 0
317787 tn?1473358451
Hi I found a study on this, I will find it and come back.
Melvilles story is heartbreaking, his wife has suffered and continues to suffer.

What his wife experienced seems to have happened to people who did the tx pre peg but I am no expert, it just seems to be that way.

I guess one could do a search on long term side effects to find the real number of people who have come here looking for help.
This is the Hepatitis C Forum, not the HCV Tx Forum.  Everyone should be able to come here for help as it relates to HCV and tx.
The doctors seem to wash their hands of patients post tx,

I went to the lawyer site, very interested, the other site does not exist
Thank you
Helpful - 0
4309115 tn?1357606283
I wonder if what the person would have sued for If they got liver cancer
from hepatitis C?
Helpful - 0
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