sorry you are encountering this, I did read it listed with the serious side effects, here's one article that backs up tx as a cause:
Sarcoidosis Associated With Pegylated Interferon Alfa and Ribavirin Treatment for Chronic Hepatitis C
A Case Report and Review of the Literature
Eva A. Hurst, MD; Theodora Mauro, MD
Arch Dermatol. 2005;141:865-868.
Background At least 2.7 million Americans are infected with chronic hepatitis C. An increasing number are treated with interferon alfa plus ribavirin regimens. Not surprisingly, this immune stimulation is associated with the development of autoimmune and cutaneous diseases. Several cases of sarcoidosis have been reported with hepatitis C treatment, most recently in association with pegylated interferon alfa plus ribavirin. Systemic manifestations of sarcoidosis are usually treated with oral steroids, which unfortunately often increase the hepatitis C viral load. Thus, it is important to ascertain whether systemic corticosteroids are required to treat interferon alfa–associated sarcoidosis.
Observations We report the third case of cutaneous sarcoidosis in association with pegylated interferon alfa plus ribavirin treatment. Our patient had both cutaneous and pulmonary involvement, which has been spontaneously resolving since his treatment regimen was completed. In addition, we review the 12 previously reported cases of cutaneous sarcoidosis that occurred in patients undergoing hepatitis C treatment with interferon alfa.
Conclusions As the number of patients being treated with interferon alfa and ribavirin for hepatitis C increases, it is essential that dermatologists recognize the association of this treatment with sarcoidosis, because skin lesions may provide the first clue to diagnosis. Development of sarcoidosis may relate to hepatitis C as a possible antigenic trigger in the presence of an enhanced helper T cells type 1 response from treatment. Sarcoidosis with skin lesions in patients undergoing hepatitis C treatment often follows a benign course, and interferon alfa therapy may sometimes be continued with resolution of sarcoidosis occurring spontaneously or within a few months of completing treatment. Cautious use of systemic corticosteroids is warranted given their adverse effects on hepatitis C viral loads.
Author Affiliations: Department of Dermatology, University of California, San Francisco.
That's terrible, sorry to hear about that unfortunate sx as a result of the HepC tx. Is it ocular sarcoidosis or skin lesions that you're having problems with and did you have any eye trouble prior to the HepC tx or did it just pop up out of nowhere? Thanks for sharing your story, I did a little bit of reading on the subject. There's alot of information on pubmed about this, and unlike "cotton wool spots" where they stop or reduce inteferon tx right away. This sarcoidosis seems to be a result of both inteferon and ribavirin both. good luck
i was diagnosed with sarciodosis shortly after eot. mainly it's bumps
on my arms and buttocks. at first i had some large bumps but now they
are all small and seem to be going away. i had a lot of trouble breathing
for a few weeks but now i'm fine. my chest xray was clear so the thinking
was i had one in a lymph node. all in all it wasn't a big deal and now i'm six
months post and they are almost gone.
Thanks for the responce .
I'm going to get some tests next week to see if it is affecting lungs and eyes. The lumps are ugly but not painful.
No eye trouble before treatment I hope my bumps reduce in size as well.
I've been 4 months undetected now and was feeling better every day . Now it's this chalange. At least the hep C is gone for now . All the best to all of you . Thanks , jjhvc
The granualomas are now gone . 10 months post tx still clear .Lung Cat Scan clear . Eye exam good . Oct . will be a year feeling pretty good except for the Brain Fog thing . Doc said it will get better but I do not think I'll ever ever be the same in that respect. Sometimes I remember sometime I don't . So I've named my new problem "Sometimmers" Anyone else post tx experiencing this ? Did anyone get better recall skills post 2 years or more ? Oh some of this might be my age 56.
thanks to all of you who responded. All the Best to all , Jan
wow, I'm really glad to hear this cleared up for you!!
It was helpful to read that most cases cleared after treatment, yes?
Some of the scarier things, like this, especially in the lungs (which seemed more disconserting to me....things inside are scarier than skin anomalies aren't they) are really hard to handle when they happen to US.
It's pretty amazing though that even with all kinds of weird reactions to the chemo in most cases the body heals itself and returns to normal as the chemicals clear the system.
I'll bet you are very relieved.
Thanks for sharing that with group.
The newly diagnosed or new treaters need to know this usually does clear up!!
"sometimers" I like it.
A lot of the brain fog has cleared up, but the recall isn't what it used to be...
Glad to hear your sarcoidosis has cleared up. I knew a Vietnam vet who developed that. Agent Orange was implicated at the time. Thank goodness you are still clear of the virus.
As for cognitive issues, I treated for 14 weeks. Even after that relatively short amount of time I find that my memory has been affected. New memory retention capacity is reduced and I have also lost some old information. I am still functional though. Stopping Ribavirin improved the Brain Fog very quickly. I am 52, some of it is age, but really the rest of it is defintely the drugs. I had much more processing capacity before treatment.
Try some mental exercises to see if you can rebuild your brain physically. Actively rehabilitate yourself by repetitively doing whatever you struggle with most. I think improvement is possible. I always bang on about this, but I really believe that physical and mental rehabilitation should be part of SOC. People shouldn't just be cut loose after treatment. There would be better outcomes if post-treatment diet, exercise and mental training exercises were developed and put into practice immediately. Just like you woudl expect to have physio after a shoulder reconstruction.
Sacoidosis, once it reaches stage III, is an incurable and life-threatening disease. I volunteered as a human subject to test the efficacy of a study drug SCH 503034, also known as boceprevir. I began tx May 7, 2007 and stopped March 2008, after a severe episode of unveitis. I was told the side effects would go away within six months after terminating the drug therapy; however, my side effects continued to worsen to a critical state, and was admitted to the hospital with critcal levels of blood calcium, severe renal failure, and unusual mass of infiltrates on both lungs. I was diagnosed with hypercalcemia, vascular calcification, renal failure, and stage III pulmonary sarcoidosis. During the development of my disease, I pleaded with the primary investigator of the clinical trial to provide medical follow up of the side effects, but they refused, and allowed my medical problem to develop into a more serious condition posing greater damage and more extensive treatment/testing. If you or any one else participated in this clinical trial, and suffer side effects for which the primary investigator rejected tx, we need to talk. My email is k.***@****.
Sorry to hear about your difficulties, I was in the boceprevir clinical trials in 11/08 but I had to stop tx as my hemoglobin fell drastically and I was having other difficulties with the interferon and mental health. I mean I wish I could have gone thru it but it just wasn't in the cards for me. I know my physical limitations and mentally just how much I personally can take. I was also having trouble at work and partially it was my fault b/c I didn't want anyone to know that I had HepC and was going thru the tx for it. I had a boss who was a total pain in the axx but I don't need to go back there to tell my story as it was just part of the bigger picture. I have nothing against the doctors, nurses or other staff who was involved with the clinical trials and I consider them friends. As far as I know you can quit the trials at any point especially if you feel the trial drugs have become detrimental to your health. It's truly unfortunate that some HepC patients have bad experiences but I don't think you can totally blame the clinical trials. I wish you good luck in getting better but I don't understand why you left an email address.
I am in tx and my hemoglobin is 8, I am unable to do any physical activity other than taking a shower, getting dressed, and picking up all the hair I drop all day long off the floor. I have been very depressed, can't sleep, and am antisocial (not my personality at all), so in order to keep on the tx, I had to quit my job and take AD and sleep aids, had a bad reaction to procrit, and if my hemoglobin gets in the 7 range, I have a BT or two to get me back into the 8's. Although I will finish tx (I have 3 months to go) the trade off here is that my house of 20 years is now in foreclosure because I had to choose do I keep on tx or go off to keep my job? Since I chose to stay on tx, I am now 6 months behind in my mortgage so I just got my notice last week.
I guess the point I am making here is that for me, the most important thing in my life is to be free of this HepC burden. If I am not healthy, nothing else I will do or accumulate will bring happiness. If I am ill, I will never be the person I want to be and will always be burdened with health and financial issues. I am willing to walk away from my house , if it means I will be SVR for ever!!! That is how bad I want this!!
This dreaded disease causes us to make so many difficult decisions. Without support from our medical team very few of us can make it through. The important thing is to find a team you can believe in, forget what others think about us having HEPC (by the way, I just say I have liver disease) and fight to the finish, doing whatever it takes to make it through. Give it 100%! You all are worth no less!!!
Strength and courage to you.
Jazz you certainly have the force to make the tx work for you, however, I am concerned about the consistency of your hgb at 8.0. This is verrry dangerous for you and may present additional life-threatening illnesses. Are you in a clinical trial? I invite you to review a current clinical trial by Schering Plough. You may visit http://clinicaltrials.gov/ct2/show/NCT01023035?term+hepatitis. My research indicates that treatment must stop once hgb drops under 9.7 g/dL. How can you suffer such grave physical exhaustion? You are probably in bed 24/7, and the great loss of hair would drive me insane! I did suffer the loss of hair and went insane for a month or so, but once hgb was again controlled my sanity returned. I would like to know more about your treatment. Three more months of low low hgb might just kill you, and that's worse than loosing your house! You sound like a young person and very strong to endure what you have endured thus far, but there are limits, and you are on the outer limits. How much interferon and rebavirin are you taking for tx? And how long have you been on procrit?
I wish I could help you more. Do you know about the stimulus package in refinancing your home with lower rates? My brother refinanced his house on the recent plan, and its there to help people get out of foreclosure. If you don't know about it, don't reject it until you look into it thoroughly. My bros' pymt was $800 mthly and reduced to $326. I believe they will help you with back pymts as well. If you talk to an agency that charges a fee you are not talking to the right people. Try Bank of America. Hopefully you can get some relief. You can also be considered for disability. Your health certainly spells it out. Do you have family or friends that can research for you because I know it will be quite a chore for you in the condition you are in.
I intend to keep an eye on this post, so keep in touch. Please consider a second opinion with continuing tx with such low hgb. As ugly as liver disease may seem, the liver is the strongest organ in our body and handles everything we abuse with ease. In fact, we can live with just half of it. Its perfect with all the rest of us as God meant it to be. I wish you the very best Jaz.
I am new at posting and the email is an add-on specifically for others to make contact concerning adverse effects of a clinical trial. Its a good thing that your team of specialists were looking out for your best interest, but make no mistake about it -- Pharmaceutical Companies sponsor clinical trials to make billions of dollars at your risk, and suppress adverse effects of their study drugs. When you give your informed consent to participate as a human subject it does not mean that you voluntarily submit to whatever happens. You have rights as a human subject, and one of the most important rights is your safety and protection. I stopped the tx protocol 6 weeks prior to completion because of severe uveitis -- occular side effects known to be secondary to sarcoidosis -- a life-threatening and incurable disease once it progresses to stage III. I informed the principal investigator of my side effects and requested medical follow up treatment that was promised to me by the informed consent written agreement. The PI denied my request because I did not complete the study. The AE developed into a more serious condition and I was hospitalized for extensive testing and treatment for which I had no health insurance.
I would like to know if there are others who suffer AE's of the clinical trial for which they were denied medical follow up tx. The clinical trial was conducted all over the world and in 80 locations in the U.S. If you suffer adverse effects of the experimental treatment drugs -- PegIntron/Rebetol/Boceprevir; I would like to hear from you. I cleared the virus or I should say, as of April 2009, hcv was undetected, and has been undetected at six weeks into the experimental tx. Had the PI provided medical follow up as guaranteed, my condition may not have progressed to stage III which would have been easily resolved at stage I or II.
So do you still have Sarcoidosis? Excuse my ignorance on this subject but I was under the impression that once you stop the IFN then the Sarcoidosis subsides. How were you supposed to finish tx if you were dibilitated from it and what phase trial were you in?
According to what I was told you are right, once tx is stopped, in most cases, the side effects go away, but not in all cases. I was in a phase II trial and I still have sarcoidosis with occular, renal and pulmonary involvement. It was not discovered until I was hospitalized with critical levels of blood calcium, renal failure, and unusual mass of infiltrates on both lungs. The instructions I was provided indicate a 1% chance that IFN may induce sarcoidosis. I had good health prior to tx and, because friends had died, I became extremely concerned about my medical problem. I endured the experiment for ten months and expected all side effects to resolve within six months. Oct 2008 I informed the PI of debilitating side effects. Dec 2008, an MD informed me of high blood calcium, and I notified the PI and again was rejected medical follow up. I consider the conduct a denial of fiduciary duties owed to me as a patient and as a human subject.
I am interested in finding people who participated in the clinical trial of SCH 503034, Protocol # P03523, and suffer side effects for which medical follow up tx was denied.
I hope I've answered your questions fretboard and I welcome any additional info you may offer. I wish you the best.