"Never said interferon has not saved lives. It is used for other diseases and conditions too. However, it is getting to the point that, for this particular infection, its time may be reaching an end. Not yet maybe. But pretty darn close we are, uh huh. "
I don't think anyone will mind seeing the day when we don't need interferon anymore but it takes awhile and a number of potential bumps along the way to adopt it. I was in a PhaseIIb trial with a drug that looked promising to many and it got disbanded part way through that trial. The number of people in a trial is very small when a drug is first being investigated and increases as you go along. The orals look good but we're not there yet.
In the meantime, there are people who won't be able to wait until the orals and people who want to treat and get it done. Treatment is not just what physical state you're at, it's also what your mental preparedness and life situation is as well. When I treated I could have waited but there were a whole variety of factors that made that a good TIME to treat and I am glad to have it done and be able to leave HCV behind as a factor in my life.
Interferon is needed for awhile yet for a variety of reasons. Like chemotherapy, it ain't fun and downright difficult for some, but it's what we've got and we'll keep hoping on the drugs in the pipeline that will make treatment a much better proposition for many.
Hey, I agree with Trish and Eureka....Interferon may be a gamble, as far as side effects, and long term issues, but right now its the mainstay of tx, even with the newer agents, to get rid of the virus. And though interferon may end up being "the devil" for a group of us, if it gets rid of the virus then it has potentially saved lives, and changed the game for us. I went through it TWICE to get rid of the virus...and I knew it was no walk in the park, going into round two. So yes, it will be great to get interferon into the past, when newer and less lethal drugs are put in place that get a very high cure rate...but for now..its still just 'grin and bear it'......
On another issue, regarding the similarity to autoimmune disease, and Lupus...of many long term after effects caused by Interferon in the group that end up with post-tx problems....here is what I wrote recently on another thread, that describes what I and my rheumatologist discovered on testing:
Nov 30, 2011
Thanks for your comments. Therein lies the rub, as they say. I have had several full workups by a very top end rheumatologist, and he saw all the same connections to Lupus...EXCEPT, the Lupus blood chemistry does not seem to match up with my test results...in otherwords, I have a "Lupus-Like" disease pattern, but the blood tests specific for Lupus are chiefly negative or just 'different'. Same with RA, and Sjogren's. And I mean he ran TESTS!!!!! Thirty or so specialized, very expensive tests to really verify whether or not it was 'classical Lupus, or RA or similar. He says that he has seen this same set of symptoms in a good number of post-tx patients who were also SVR, and the pattern seems to be very similar. He calls it a post-interferon autoimmune illness, or a 'Lupus-Like" illness. Its weird that many of the autoimmune markers are entirely absent...but my symptoms are spot on for Lupus...albeit a mild to moderate case...not severe. So maybe the Interferon causes a "Lupus Type" illness in some of us, but its entirely different in its chemistry from classical Lupus. Maybe they need to come up with new tests to identify THIS particular illness...because their standard tests don't 'see' the illness...and it sure is there...and manifest in a variety of obvious physical symptoms and physical changes.
Maybe more will be discovered as additional people join the list of post-tx problem cases, and pursue answers with their doctors, and rheumatologists. Its a lonely situation!
“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.
No I never signed a darn thing!
You may be onto something there. That maybe the markers of Lupus triggered by interferon are a bit different than what the Lupus markers usually are. I saw an article written by a doctor about joint pains and triggers from chemotherapy and immune system issues and wrote to her. She dismissed any possibility that the interferon could have triggered my joint pain issues. I'm not trying to start a class action suit or anything, I want the same as you. I want the medical community to acknowledge additional issues that are becoming known as interferon-triggered so that it can be addressed properly. That doesn't mean I'm not happy I did treatment. I just want people who have issues post-treatment to get proper care and acknowledgement instead of being brushed off as whiners and hypochondriacs.
Good post on the big picture on interferon. It IS what we have for now, isn't it and while it's a nasty outcome for some, it's what gives hope for many for a cure for now.
Take care and hope you do find your answers eventually and your peace.
" So yes, it will be great to get interferon into the past, when newer and less lethal drugs are put in place that get a very high cure rate"
I hope your right that they will be less lethal, time will tell.
DD, you mentioned above that you already went through 2 trt attempts using interferon which led you to having your current health issues. To help us understand better and help put things into perspective can you address a few questions please? I'm sure you've mentioned this several times in the past, but unfortunately I don't recall your history.
Can you tell us how many total weeks you were on interferon during the 2 trts?
Was this using the standard dose during the whole course of trt (180 mcg) ?
Was this using peginterferon alfa-2a or 2b?
Thanks in advance. I do hope these issue resolve themselves in the future.
first attempt was about 64 weeks, and was I clear at end, but relapsed, due to using low Ribavirin. I was doing daily Alpha Inf. A, and switched over to Infergen, 15 mcg,daily, for the last two thirds of the 64 weeks, due to slow response from daily Inf. A.
Second round was weekly PegIntron, (2A) and used the full vial, and for my body weight this worked out to more than the weight adjusted minimums for the tx. I also was on Ribavirin full dose, and Procrit for anemia. Total of 72 weeks,the course recommended for relapsers, and for Type 1-B, and was clear from week 19 until ending tx. Have remained negative for nearly ten years, which equates to 'cured', or eradicated.
My problem is that I see many of these issues getting slowly worse over time. They began in earnest about three to four weeks after ending tx, and never went away. For the first two or three weeks after ending tx, I felt absolutely fantastic, like when I was18 years old, and had no HCV..I had.energy, was happy, upbeat, sexually charged, everything was really great....and I thought Wow, this is a total CURE, beyond belief....and then the post-tx symptoms came on, more or less like a sledge hammer...one after another, and relentless. I have heard others comment on thet 2-4 week window after tx, when there is a feeling of total health and well being, and then the same happened to them. I was absolutely sure for months, and months that I had relapsed. The tests all said SVR...over and over and over. That's when I starter to realize that it was from the Interferon, not the virus...an began researching to see what others were experiencing I have read many similar stories to mine, and they all fit the same sort of pattern. That's my story!
I had to sign didn't have a choice my liver was a 3 and a high VL
It's better than being dead but not much~
DD, thanks very much for sharing your story.
Just to be sure I understand, your first round was 64 weeks, then the second round 72 weeks, for a total of 136 weeks on interferon?
Congratulations on your diligence and ultimate SVR. I'm planning for 48 weeks and thought that was a long haul. It is inspiring to hear what you've endured, but very unfortunate that you've been left with collatoral damage from trt. Very sorry to hear this and hope it doesn't progress any further. Best wishes to you.
I approached the drug company for information post-treatment and they sent me the consumer information that comes with the meds. When I requested that I wanted some information regarding any research done on post treatment they got very uptight. My next visit to the GP he asked me if I would like him to lodge notification to the company about my persistant side effects 2 years post treatment. I think the drug company had contacted him about me, and he was wanting to cover his ***. It's been 4 years now and I have an array of 'conditions' that all manifested during treatment but are somehow distanced from their onset. I feel like I am not heard. I cleared the disease, but my quality of life is impacted.
I would take your doctor's comments differently. Doctors are required to report side effects that are not listed as known side effects of a drug. If there are enough reports of those things, the drug companies have to respond. I believe that's a very simple explanation of how it works. What your doctor offered to do was to go the extra mile and report that his patient has side effects from interferon that have not as yet been acknowledged. What do you think of that possibility? If yes, then you might want to take your doctor up on this. The drug company is the one who will want to cover their *** and you won't get very far talking to the drug company on your own. However, if the doctors report these things and there are enough reports, then a response from the drug company is required at some point, to provide fuller disclosure. I think your doctor offering to do this IS your voice being heard.
Just my take on that one.
Great topic. That said, I believe that most people who suffer after tx and totally believe that it was caused by the interferon could be wrong. Maybe they became depressed on the interferon as it brings up all kinds of stuff both mentally and physically. Maybe they had never been depressed in their life, prior to tx and now they are but they're in denial. It's certainly possible.
It's also possible that some people have definite problems neurologically or physically but before all that can be honestly looked at the depression needs to be assessed as well. I find that alot of people who find themselves in the position of being messed up b/c of tx won't even take an antidepressant because they have never been depressed before in their life. If they continue to keep that attitude then they may never find out what's really wrong with them. I'm just sayin'.
I'm certainly not one of the many super smarties here, but, as I'm reading this thread, I 'm thinking, how does anybody know that it's the interferon causing the problem? How could that be proved? I guess I'm saying I see your point! ; >
Thanks Trish, I get your point, and I am a little bitter. Living in constant pain and fatigue does that to you. The doctor was a little patronising in his tone and said that nothing would be done about it as there would need to be many others reporting to have an impact. I will ask him to make a report, and add to the others (hopefully) that have also reported their post treatment circumstances.I guess I feel that it was coincidental that he offered to acknowledge the drug company after I had approached it. I hadn't told him I had approached them, and I feel the drug company may have traced me. I have an ambivelant relationship with him, but he has treated me respectfully. I have this link which has a post treatment research article that was done and has some interesting conclusions concerning informed consent. Kind regards, Sandalwood.
Thank you for the study. I guess examining the subjective feelings of 25 post-tx patients is something - but I guess I'd hoped this would be more of an examination of the actual physical causation of the problems. Still,a step in the right direction. Thank you Univ. of New S. Wales, Hepatitis Council of NSW, et al.
After 8.5+ years of sustained response, I stll find it diffucult to determine which post-tx problems are:
Long-term exposure to HCV related
The result of long term exposure to toxins both on and off the job
I think it is proably some combination of some or all of the above and the answer is different for each patient and probably also dependent partially on each patients genetic make up.
Lest you come to the conclusion that DD's sx are a result of long term IFN use, I'm one of those whose post-tx sides followed a similar pattern, though nowhere near as extreme. 23 shots and 22 weeks riba. Sustained responder.
I think Peg-Intron is 2b and Pegasys 2a.
Sandalwood...Thanks for the study...its a unique thing to have ANYBODY doing studies on post-tx sx!!! We need much more.
Fretboard.....Well I guess if depression is characterized by a pattern of symptoms like: reactive arthritis, peripheral neuropathy, rosacea, increased blood pressure, severe eye problems, gland swelling, mouth sores, sun sensitivity, severe brain fog and cognitive impairment, tendonitis, and balance issues, gait disturbances, extreme fatigue, and on and on.......then I guess we must ALL be depressed. Funny thing though, I get an entirely different set of symptoms when I google depression symptoms on medical sites........ And funny thing that the pattern seems to be consistent across a wide ranging group of treaters, who generally are hit with the sx about two to four weeks after terminating tx. And its also interesting how several top rheumatologists have been observing the same set of symptoms in post-tx patients, and call it post interferon syndrome.
Of course, I appreciate your conjecture on the subject, but I do not think your conclusion fits in any way.
No my theory does not apply to all people and definitely does not apply in your case at all. I do believe it applies to some people tho' and you see it quite a bit with the flash in the pan types who post on this forum only to vent and they're out of here never to be seen or heard of again. At least not on this forum. I welcome people who can tell the truth about tx and defend what they say. This is good for all of us and I've always said that it is imperative that big pharma study the amount of drugs given as a one size fits all approach is not the answer and that in and of itself could be the answer to many questions. Maybe they should study giving a weight based drug regime. idk, but I do know that some people get horrendous sx's and other's not so much. Sure, some of that would go to how the individual metabolizes various drugs but surely a 250 pound man would need more drug than a 95 pound girl. I've said that before too. In closing all I can say is that if someone goes thru tx and ends up worst off than before they started, then by all means speak up. In fact, it may be a good idea if everyone who goes thru tx makes a list of the issues they have or don't have and when they're done it will be easier to see if the drugs created health issues for them or not. Kind of like a before and after diary, just a thought. I will be doing that myself when I tx because I have alot of issues and I certainly don't need anymore. One last thing, it may be a good idea for people who are new and reading this to be very prepared before tx because some have no idea what they are up against. I know I didn't. Sure the black box warnings list alot of stuff and they cover every area but I don't think they cover pre-existing conditions good enough. And I don't think they cover telltale signs of conditions to come either. Maybe they feel if they give too much information they will scare people off. idk
In Australia, when I had my treatment in 2006/7, my weight was monitored weekly. The dosage was guided by the severity of my symptoms. Maximum dosage was given when we could take it and minimized when/if we were really wiped out. We were issued with a diary to keep track of our experience. It would have been helpful to give an account of our diary in relation to the tx/sx/dosage to the drug companies if we chose to. I suppose the doctors gave that information to them under anonymous terms. Knowledge is power. I think that the area of informed consent lies with making an informed choice, and on my part, I was not told of the long term implications surrounding the drug, I was told that it may take 2 years to feel recovered. Still waiting.....
mike i have tx'd twice on the old paradigm. i am interested in pharmasset, do you have any info on where i can get more info? i want to try to get on a trial or even any of the others....
who is this Lloyd guy and what is the group consensus on milk thistle? Is it as helpful as claimed???
I was diagnosed and treated for Hep C 7.5 years ago. I had gotten hep 31years prior to treatment. I was diagnosed with Lupus 20 years prior to treatment. I to showed all the symptoms even though the test results were inconclusive. When I was diagnosed I tested positive for cryoglobulinemia and Raynards (sp?). There are also other rheumatilogical disorders that are associated with Hep C. After completing treatment I felt better than I had in years. Two years ago I began having problems with, joint and muscle pain, sensitivity to cold ect.... I have since been diagnosed with mixed connective tissue disease. I don't believe this was caused by the hep c treatment. Rheumatilogical disorders can be triggered by other illnesses.In most of the information that I read prior to treatment there was mention of these illness being RELATED to hep c. Short bursts of prednisone, maintaining a good weight, a good attitude and having a rheumatologist that takes me and my health seriously is VERY important I choose to live in the solution. Thanks for your post
"This Lloyd guy" is someone who seems to not understand even the basics about HCV and sells books bashing IFN. Regardless of what the group consensus on milk thistle is, the latest studies show it to have no beneficial effect.
I have to comment on your post. I went through Hep C treatment with interferon/ribavirin twice. Within 2 months of beginning the first round of treatment, I began experiencing symptoms which I had not been made aware of by my doc. Loss of hearing.....eventually ending up with a 60% and 50% loss of hearing in my right and left ears respectively. Within 10 months, I had lost 10 teeth, and less than 1 year after the final treatment, all but 2 teeth had rotted and fallen out. I won't go into everything else that's happened to my body and brain. But I will state that I know quite a few folks who have gone through the treatment and are experiencing very many and very similar, long term side effects as myself. I just feel that you're making idiotic assumptions about the number of people experiencing long term, negative effects of treatment. Assumptions based on the number of "Posts" or "Comments" by individuals on this site. Do some research of your own and you'll find that there are MANY people just like me, who have been left disabled by interferon/ribavirin therapy!
I wonder if what the person would have sued for If they got liver cancer
from hepatitis C?
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
Small Study effects after tx
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.
Although this report is from UK, at least someone is acknowledging that aftercare after treatment is missing. . .
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.
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.
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.
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.
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.
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
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
Thanks for the link Dee. It's a very sad and scary outlook on treatment :(
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,
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
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
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...
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.
Thank you for this link, I must have missed it
I appreciate you sharing
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.
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.
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.
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).