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Are Autoimmune Disorders Triggered By TX Permanent?
I have read about Psoriasis and Rheumatoid Arthritis being some of the Autoimmune Disorders triggered by TX. I haven't read anywhere if these conditions resolve once TX is over. I have looked high and low with no luck and was hoping those of you who have either finished TX or just know about the topic can enlighten me on it. I am on week 15 of Peg/Copeg and have developed Psoriasis. I have also developed crippling joint pain in my left knee. I don't believe its Rheumatoid Arthritis as Ive read if I have it in my left knee I would also have it in my right knee as well. (which I do not thank God) So, if its just joint pain in general, will that resolve when TX is over or is it permanent.
TX has been extremely hard for me but I'm pushing on. I'm hoping these issues Ive developed will resolve someday.
TX has been extremely hard for me but I'm pushing on. I'm hoping these issues Ive developed will resolve someday.
Don't know if this will be of any help,I did have a little psoriasis for many years pre treatment,just on my right hand and wrist area.A lot of health issues whether is was hep c related or not got better or worst during treatment . I seemed to be developing autoimmune symptoms,or it seemed that way.A lot of the sides effects of the meds are similar to autoimmune or lead to that while treating.It's hard to tell which is which,in any case for the majority it all resolves post treatment especially after a successful treatment.
I'm now 21 weeks post treatment and all the health issues I had pre treatment are now all gone,including my psoriasis .
All the best to you for successful treatment
Dannyboi7
I'm now 21 weeks post treatment and all the health issues I had pre treatment are now all gone,including my psoriasis .
All the best to you for successful treatment
Dannyboi7
One thing at a time is my advice.
Reading about possible autoimmune disorders post tx does not mean you will have them. Regarding the knee if it is that bad I would get it x-rayed.
b
Reading about possible autoimmune disorders post tx does not mean you will have them. Regarding the knee if it is that bad I would get it x-rayed.
b
I appreciate all the great perspectives and information given on this topic. When I started TX back in Sept 2012 I was extremely naive to many aspects of HCV. Since then I have become very proactive in my TX and in educating myself about it.
Having said all that and knowing what I know now, If I had a choice to go back and reconsider starting TX, Id do it all over again. Even though I am suffering from pain and psoriasis know, I would still decide to treat.
I haven't had Hep C for 20 years like many nor do I have any signs of fibrosis. My decision to TX was based on 18 months of undiagnosed abdominal pain, nausea, and unexplained weight loss. After exhausting all forms of tests (Colonoscopy,Endoscopy, PillCam,CT,MRI,Ultrasound,HIDA Scan) I decided to try TX as my Gastro said "sometimes Hep C causes non specific abdominal pain" So, I say this because 15 weeks into TX guess what? Yup, my 18 month abdominal pain as subsided extensively.
In terms of dealing with my new-found issues, I will. But, I will not stop TX.
his3707 said it very eloquently above, " I guess I would rather have a knee replaced than a liver" Indeed
Having said all that and knowing what I know now, If I had a choice to go back and reconsider starting TX, Id do it all over again. Even though I am suffering from pain and psoriasis know, I would still decide to treat.
I haven't had Hep C for 20 years like many nor do I have any signs of fibrosis. My decision to TX was based on 18 months of undiagnosed abdominal pain, nausea, and unexplained weight loss. After exhausting all forms of tests (Colonoscopy,Endoscopy, PillCam,CT,MRI,Ultrasound,HIDA Scan) I decided to try TX as my Gastro said "sometimes Hep C causes non specific abdominal pain" So, I say this because 15 weeks into TX guess what? Yup, my 18 month abdominal pain as subsided extensively.
In terms of dealing with my new-found issues, I will. But, I will not stop TX.
his3707 said it very eloquently above, " I guess I would rather have a knee replaced than a liver" Indeed
On the flip side and not to deny that some have lasting side effects, many do not, the only lasting side effect I have is that I am virus free after 48 wks of TX w/inc. I have my 24 wk post TX (SVR) PCR on the 8th and will let you know the results. I was UND at 3 months post TX (99.7% chance of SVR) so I am not to worried about the upcoming test.
Have a great day
Have a great day
"I think that most experienced clinicians with some expertise would advise you to stop treatment under these circumstances - at least I have read as much in journals and warnings. "
-----------------------------------------
If this was the case, almost no one would complete treatment because most of us would be advised to stop treatment.
I am sorry you had such a bad experience, Rambleon, but most of us are happy we treated. Most of us are rid of the virus and most of us feel a lot better than we did before treatment.
As noted in previous posts and threads, those numbers that you quote are outdated and it is now recognized that Hep C has multiple extrahepatic manifestations which affect not only the quality of life, but also the course of life and length of life. It is also now recognized that the death rate from other diseases is much higher in people with Hep C than it is in those without Hep C. (However, those early deaths are not attributed to Hep C, but rather to cardiovascular disease, kidney problems, cancer, etc., so they are not counted in Hep C death numbers even though they should be.)
http://jid.oxfordjournals.org/content/early/2012/07/13/infdis.jis385.full
Here are some links to extrahepatic manifestations of Hep C:
http://www.ccjm.org/content/72/11/1005.full.pdf
http://www.hindawi.com/journals/cdi/2012/740138/
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf
http://emedicine.medscape.com/article/1134161-overview
-----------------------------------------
If this was the case, almost no one would complete treatment because most of us would be advised to stop treatment.
I am sorry you had such a bad experience, Rambleon, but most of us are happy we treated. Most of us are rid of the virus and most of us feel a lot better than we did before treatment.
As noted in previous posts and threads, those numbers that you quote are outdated and it is now recognized that Hep C has multiple extrahepatic manifestations which affect not only the quality of life, but also the course of life and length of life. It is also now recognized that the death rate from other diseases is much higher in people with Hep C than it is in those without Hep C. (However, those early deaths are not attributed to Hep C, but rather to cardiovascular disease, kidney problems, cancer, etc., so they are not counted in Hep C death numbers even though they should be.)
http://jid.oxfordjournals.org/content/early/2012/07/13/infdis.jis385.full
Here are some links to extrahepatic manifestations of Hep C:
http://www.ccjm.org/content/72/11/1005.full.pdf
http://www.hindawi.com/journals/cdi/2012/740138/
http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf
http://emedicine.medscape.com/article/1134161-overview
To follow up on what rambleon40 has said... I waited about a a year to see the Liver Guru at UPMC Liver Center (Pittsburgh) but before seeing him I got to see his assistant nurse.
I just finished going over my 1.5 page list of "thanks for curing me but" these are the issues I have two years after ending treatment now ... and she said "I am sorry. We destroyed your life!"
At first I was shocked that she would say this then I was relieved by, FINALLY, one person had the guts to tell the truth!
She said it a couple more times. Every time she would say it I winced but then again kinda felt relieved... and had hope that the Guru would have some answerers! Ha!
He was the same old same old... treatment had nothing to do with any of your issues, blah blah blah. Soooooo disappointing! They just dont want to know that truth as then they would have to start not only taking care of the few that do not recover from these very strong meds but also require the FDA as well as the big pharmas to go back and do more research on the long term effects of this low dose chemo!
I just finished going over my 1.5 page list of "thanks for curing me but" these are the issues I have two years after ending treatment now ... and she said "I am sorry. We destroyed your life!"
At first I was shocked that she would say this then I was relieved by, FINALLY, one person had the guts to tell the truth!
She said it a couple more times. Every time she would say it I winced but then again kinda felt relieved... and had hope that the Guru would have some answerers! Ha!
He was the same old same old... treatment had nothing to do with any of your issues, blah blah blah. Soooooo disappointing! They just dont want to know that truth as then they would have to start not only taking care of the few that do not recover from these very strong meds but also require the FDA as well as the big pharmas to go back and do more research on the long term effects of this low dose chemo!
Forgive me, but the above statements that you can expect the symptoms to go away are speculation. They have just as much truth and certainty as if I were to tell you that the symptoms would remain.
The truth is, nobody knows what will happen.
The exact phrase that Roche has used in the past re: psoriasis is "Many, but not all" cases will resolve.
What we do know is that your body is having a significant auto-immune reaction to treatment (crippling! pain). Your skin and your bones are not the only organs susceptible to these autoimmune reactions. So are your pancreas, liver, thyroid, peripheral nerves, heart muscle, bone marrow, brain,etc.
I say this not be a bummer or to be bitter (as I am too often accused) but to instead speak unfortunate truth.
If INF is doing that (psoriasis) to your outside and attacking your bones on your inside, what are the odds that it is leaving your other organs alone?
I think that most experienced clinicians with some expertise would advise you to stop treatment under these circumstances - at least I have read as much in journals and warnings. If you have a doctor who is looking at you and shrugging about this issue, run find another doctor.
Statements that your liver will fail or that you will develop liver cancer if you do not treat vastly overstated the likelihood of such events. You have at least a 95% chance of dying with Hep C, not of it, per the CDC.
As you are now showing significant autoimmune effects, you have probably better than a 5% chance of developing serious side effects / injuries from the drug.
Has the virus gone to undetectable? Are your liver enzymes still high? If so, you must suspect auto-immune hepatitis, also.
There are no easy answers. Many say that they have acquired this affliction or that but have avoided liver failure. What they have avoided, however, by lessening their quality of life with some new affliction is a 5% chance of liver failure. In all likelihood their livers would never have failed anyway.
It's just a value judgment. Good luck! Seriously, good luck. It's a difficult difficult thing. I hope things work out for you.
The truth is, nobody knows what will happen.
The exact phrase that Roche has used in the past re: psoriasis is "Many, but not all" cases will resolve.
What we do know is that your body is having a significant auto-immune reaction to treatment (crippling! pain). Your skin and your bones are not the only organs susceptible to these autoimmune reactions. So are your pancreas, liver, thyroid, peripheral nerves, heart muscle, bone marrow, brain,etc.
I say this not be a bummer or to be bitter (as I am too often accused) but to instead speak unfortunate truth.
If INF is doing that (psoriasis) to your outside and attacking your bones on your inside, what are the odds that it is leaving your other organs alone?
I think that most experienced clinicians with some expertise would advise you to stop treatment under these circumstances - at least I have read as much in journals and warnings. If you have a doctor who is looking at you and shrugging about this issue, run find another doctor.
Statements that your liver will fail or that you will develop liver cancer if you do not treat vastly overstated the likelihood of such events. You have at least a 95% chance of dying with Hep C, not of it, per the CDC.
As you are now showing significant autoimmune effects, you have probably better than a 5% chance of developing serious side effects / injuries from the drug.
Has the virus gone to undetectable? Are your liver enzymes still high? If so, you must suspect auto-immune hepatitis, also.
There are no easy answers. Many say that they have acquired this affliction or that but have avoided liver failure. What they have avoided, however, by lessening their quality of life with some new affliction is a 5% chance of liver failure. In all likelihood their livers would never have failed anyway.
It's just a value judgment. Good luck! Seriously, good luck. It's a difficult difficult thing. I hope things work out for you.
I am having trouble finding the articles but I found this article which I think is very good. I copied and pasted the part about Psoriasis but I think the entire article is worth reading and I included the link to the article.
HOT TOPICS IN VIRAL HEPATITIS: Issue 9, 2008
Management of side effects of interferon alfa and ribavirin-based treatment of chronic hepatitis C
Dermatological side effects
Jann Lübbe
"Psoriasis, sarcoidosis and other autoimmune disorders
Interferon alfa treatment is associated with induction or aggravation of a variety of autoimmune inflammatory disorders. Molecular studies in psoriasis provide a suggestive model for the immunomodulatory role of interferon alfa in autoimmunity. Interferon alfa has been shown to be an essential cytokine for psoriasis development in vivo [52], and infiltrating T cells forming psoriatic lesions have been shown to display increased sensitivity to interferon alfa [53].
It is not surprising that most observations of interferon-induced autoimmune skin disease concern the more frequent entities such as psoriasis [54-57], sarcoidosis [58] (mostly associated with combined treatment regimens with ribavirin, reviewed in [59]) and vitiligo [57,60]. Anecdotal reports concern symptoms associated with connective tissue disorders (Raynaud’s phenomenon [39], xerostomia [39], cutaneous lupus erythematosus [61]), polyarterisis nodosa [62], bullous autoimmune disease [63,64], and Crohn’s disease [65].
The association of pre-existing elevated levels of antinuclear antibodies with the development of autoimmune symptoms during interferon therapy may reflect latent autoimmunity as a risk factor, but data are insufficient to establish a causal link, and prior testing for autoantibodies is not generally recommended [66]. However, autoimmunity, as evidenced by the presence of serum autoantibodies in melanoma patients treated with interferon alfa, has been associated with improved prognosis [67].
Management of autoimmune disorders in the setting of interferon therapy depends on the individual presentation of the case. Most reports suggest full reversibility of the symptoms after the cessation of interferon treatment [66], and the decision whether treatment should be interrupted or continued depends on an evaluation of risks associated with either scenario. "
http://www.hottopicsin.com/Articles/tabid/109/SerieId/14/IssueId/65/ArtId/105/Act/2/Default.aspx
Here is one case (not a study or several cases, but one).
http://www.researchgate.net/publication/5968213_Extensive_psoriasis_induced_by_pegylated_interferon_a_case_report
Journal Article
Extensive psoriasis induced by pegylated interferon: a case report.
Vincenzo Citro, Raffaele Fristachi, Giovanni Tarantino
Department of Clinical and Experimental Medicine, Federico II University Medical School of Naples, Italy. .
Journal of Medical Case Reports 02/2007; 1:86. DOI:10.1186/1752-1947-1-86
0 0
Abstract
"This paper describes the clinical course of a patient with chronic hepatitis C, genotype 2a/2c, previously treated with Interferon alpha2b and subsequently with Lymphoblastoid Interferon without any response, and also without any cutaneous side effects. The patient, a 50 year-old woman, was re-treated with Pegylated alpha2b Interferon plus Ribavirin for 24 weeks, at standard doses; during the third month of therapy she developed a mild form of psoriasis. However, encouraged by the progressive improvement of her transaminase levels and viral load decrease, the patient asked to continue the treatment; she normalized the transaminase levels during the fourth month and showed HCV-RNA negativity during the fifth month of therapy. Nevertheless, the psoriasis become worse, extending to over 75% of her body. Therapy was completed after sixth months. A month after the therapy was ceased, the patient's psoriasis receded spontaneously and completely. During the subsequent four years the patient did not experience any recurrence of either the hepatic disease or the psoriasis. "
HOT TOPICS IN VIRAL HEPATITIS: Issue 9, 2008
Management of side effects of interferon alfa and ribavirin-based treatment of chronic hepatitis C
Dermatological side effects
Jann Lübbe
"Psoriasis, sarcoidosis and other autoimmune disorders
Interferon alfa treatment is associated with induction or aggravation of a variety of autoimmune inflammatory disorders. Molecular studies in psoriasis provide a suggestive model for the immunomodulatory role of interferon alfa in autoimmunity. Interferon alfa has been shown to be an essential cytokine for psoriasis development in vivo [52], and infiltrating T cells forming psoriatic lesions have been shown to display increased sensitivity to interferon alfa [53].
It is not surprising that most observations of interferon-induced autoimmune skin disease concern the more frequent entities such as psoriasis [54-57], sarcoidosis [58] (mostly associated with combined treatment regimens with ribavirin, reviewed in [59]) and vitiligo [57,60]. Anecdotal reports concern symptoms associated with connective tissue disorders (Raynaud’s phenomenon [39], xerostomia [39], cutaneous lupus erythematosus [61]), polyarterisis nodosa [62], bullous autoimmune disease [63,64], and Crohn’s disease [65].
The association of pre-existing elevated levels of antinuclear antibodies with the development of autoimmune symptoms during interferon therapy may reflect latent autoimmunity as a risk factor, but data are insufficient to establish a causal link, and prior testing for autoantibodies is not generally recommended [66]. However, autoimmunity, as evidenced by the presence of serum autoantibodies in melanoma patients treated with interferon alfa, has been associated with improved prognosis [67].
Management of autoimmune disorders in the setting of interferon therapy depends on the individual presentation of the case. Most reports suggest full reversibility of the symptoms after the cessation of interferon treatment [66], and the decision whether treatment should be interrupted or continued depends on an evaluation of risks associated with either scenario. "
http://www.hottopicsin.com/Articles/tabid/109/SerieId/14/IssueId/65/ArtId/105/Act/2/Default.aspx
Here is one case (not a study or several cases, but one).
http://www.researchgate.net/publication/5968213_Extensive_psoriasis_induced_by_pegylated_interferon_a_case_report
Journal Article
Extensive psoriasis induced by pegylated interferon: a case report.
Vincenzo Citro, Raffaele Fristachi, Giovanni Tarantino
Department of Clinical and Experimental Medicine, Federico II University Medical School of Naples, Italy. .
Journal of Medical Case Reports 02/2007; 1:86. DOI:10.1186/1752-1947-1-86
0 0
Abstract
"This paper describes the clinical course of a patient with chronic hepatitis C, genotype 2a/2c, previously treated with Interferon alpha2b and subsequently with Lymphoblastoid Interferon without any response, and also without any cutaneous side effects. The patient, a 50 year-old woman, was re-treated with Pegylated alpha2b Interferon plus Ribavirin for 24 weeks, at standard doses; during the third month of therapy she developed a mild form of psoriasis. However, encouraged by the progressive improvement of her transaminase levels and viral load decrease, the patient asked to continue the treatment; she normalized the transaminase levels during the fourth month and showed HCV-RNA negativity during the fifth month of therapy. Nevertheless, the psoriasis become worse, extending to over 75% of her body. Therapy was completed after sixth months. A month after the therapy was ceased, the patient's psoriasis receded spontaneously and completely. During the subsequent four years the patient did not experience any recurrence of either the hepatic disease or the psoriasis. "
PS: I already had a lot of aches and pains in my joints before treatment, most likely from the Hep C virus itself. Most of my aches and pains that I had before and during treatment are now gone.
I appreciate your response. I used to work for the Forest Service and my knees were used more than any part of my body so maybe like you said I already have some wear and tear and the meds are exacerbating that. Thanks again for your response.
Hi there: I think it varies so much, from person to person.
Like you, I also developed crippling pain in my left knee, halfway thru my 28 wk Treatment.
I remember, at a certain point in my Treatment, my legs were also very wobbley,and I was afraid they would give out, while I was crossing the street, etc.
I am 5 months Post Treatment now, and the knee pain is alot better, although I have had to slow down on activities that I used to do, with no problem, such as riding my bike up hill etc ( I plan on getting a better bike with a better lower gear now)
But now my hip seems to pop outof socket, when I get up from my very low car. All my joints make popping sounds.
The think is, my legs were getting weaker, in the year before my Treatment, and also my shouldr popped out of socket, the weak before I started the meds (I was 49 yrs then) So the problem was already there (joint prob) but the meds seemed to exacerbate it.
Keep in mind, I have never gone to any Specialists, to try to narrow down what the joint pain is from, as I am very busy with work, and raising children.
Now that I am off treatment, I am working on strengthening exercises, and would not describe my joint pain as "crippling" at all. I only get stiff from the cold, something that never happened before.
It is normal for you to be feeling joint pain during your Treatment, and considering your age, I think she should stay positive and expect your pain to go away after Treatment.
Like you, I also developed crippling pain in my left knee, halfway thru my 28 wk Treatment.
I remember, at a certain point in my Treatment, my legs were also very wobbley,and I was afraid they would give out, while I was crossing the street, etc.
I am 5 months Post Treatment now, and the knee pain is alot better, although I have had to slow down on activities that I used to do, with no problem, such as riding my bike up hill etc ( I plan on getting a better bike with a better lower gear now)
But now my hip seems to pop outof socket, when I get up from my very low car. All my joints make popping sounds.
The think is, my legs were getting weaker, in the year before my Treatment, and also my shouldr popped out of socket, the weak before I started the meds (I was 49 yrs then) So the problem was already there (joint prob) but the meds seemed to exacerbate it.
Keep in mind, I have never gone to any Specialists, to try to narrow down what the joint pain is from, as I am very busy with work, and raising children.
Now that I am off treatment, I am working on strengthening exercises, and would not describe my joint pain as "crippling" at all. I only get stiff from the cold, something that never happened before.
It is normal for you to be feeling joint pain during your Treatment, and considering your age, I think she should stay positive and expect your pain to go away after Treatment.
"I have been off treatment for almost 9 months and have been gradually feeling more and more pain in my joints. Hips and knees."
So this pain started while on TX and now 9 months later is getting worse? You know, I understand the difference between autoimmune disorders and basic side effects of TX but I'm unclear on whether the autoimmune disorders will remain permanent.
So this pain started while on TX and now 9 months later is getting worse? You know, I understand the difference between autoimmune disorders and basic side effects of TX but I'm unclear on whether the autoimmune disorders will remain permanent.
I have been off treatment for almost 9 months and have been gradually feeling more and more pain in my joints. Hips and knees. I am going to see a doc about some problems with my pinky on my left hand. (red and sore on the inside at the knuckles that wont go away) I never had joint pain issues before treatment. I hate to complain because I feel so much better than while on treatment thank God.. I Took tramadol for bone pain while on treatment. I am SVR and greatful. But I was in better how would I say, outward health before treatment than after. Except for having the virus of course. I am getting older everyday just turning 54 today. I cant decipher what is age and what could be related to treatment. I feel like treatment itself and the stress that I expereinced with it has definately changed my physical appearance and not for the better. But I dont have the virus anylonger. I was at stage 2 going tword stage 3 fibrosis so I had to do the treatment. I guess I would rather have a knee replaced than a liver....
I really believe once you are off treatment and you give your body time to heal all those issues will go away.. good luck with tx ... xoxoxo
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Interferon can trigger various Autoimmune Disorders.
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You asked about Psoriasis and also the joint pain and if they will resolve after treatment. No one knows that answer for sure. Every person is different and their body reactions are different. Some will resolve; some may not.
However, in most of the literature I have read, most of the Psoriasis problems do resolve at some point after treatment ends. I researched Psoriasis because I got it too, at about 40 weeks into treatment. (I did 48 weeks of treatment.) The thing is, Interferon often triggers autoimmune disorders that a person is already predisposed to getting, but just has not developed yet or maybe never would if there was no Interferon treatment. So, most of us are probably dealing with something (Psoriasis) that we may or may not have progressed to whether we had treatment or not. Still, as I noted, most literature I have read states that the Psoriasis usually gradually resolves after treatment ends (in most people).
In my case, I have had rash and skin issues since about week 10, although these issues did not include Psoriasis until about week 40. I finished treatment on Aug. 25th and the Psoriasis got a lot worse before it got better. I still have it but it is not very bad. It was at its worst in late Sept. and Oct. I am hoping it gradually disappears.
As far as the joint pain, it is difficult to know how much of that joint pain is from all of the drugs and treatment put together and how much could be from an Autoimmune process. Most of us had a lot of joint pain while on treatment, varying in degree. It may just be the treatment drugs causing the pain, and it may not be any type of Autoimmune disorder. I found that the joint pains varied in intensity and came and went. During treatment I had fairly bad right hip pain (limping and difficult to put weight on it) for several weeks but that too gradually disappeared after 2-3 months.
It is totally gone now. Of course, it could be due to some sort of Autoimmune problem too. Again, from what I have read, most of these Interferon induced Autoimmune problems do resolve, but there is no guarantee.
As noted, I did develop several symptoms that were symptoms of some major Autoimmune problems and so I researched this topic fairly thoroughly. I was very concerned that I may be developing Multiple Sclerosis from the Interferon. However, I read that usually those symptoms also disappear once off Interferon, and they did disappear within a few weeks of being off Interferon.
I am going to try to find some of the articles I read. The problem is that I read many, many articles and I did not bookmark them. Therefore I am not sure I can find all of them again, at least without going through weeks of research.
If I can find some of them, I will post them.
In the meantime, I would see a dermatologist and get some treatment to help control the Psoriasis (that is what I did). I took Tylenol for the hip pain although it did not do much. The pain just gradually subsided.
It is unfortunate you are having a rough time, but you are well into treatment and well on your way to attaining SVR. Here's wishing you the best of luck.