I'd be curious to hear from combo tx graduates who experienced auto-immune complications during tx. Did the problems resolve for you and if so how long did it take? I expect auto-immune disorders take longer to settle down than other sides but have no idea how long. My particular problem is rampant psoriasis with some associated arthritis.
I ended 48 weeks of tx 7 - 8 weeks ago. My psoriasis, which went into high gear on therapy is slowly returning to pre-therapy level. I have psoriatic arthritis as well. The increase in arthritis was not near as bad as the psoriasis, but the onycholysis (fingernail lifting) was very intense. Nine out of my ten fingernails were severely affected. Four completly crumbled. One of those seem to be making a comback. The other three are questionable at this point. All four of these fingers are ones that usually stay swollen from the arthritis. The other five are just now starting to grow back. Hope this helps.
Willing, I ended my 48 weeks last March. Prior to tx, I never had a problem with skin rashes or psoriasis. Toward the end of my treatment I developed both. Now, all these months later, it is my one lingering side. It drives me insane. Sometimes it gets almost as bad as it did when I was on TX. I have been wondering if this will be a permanent condition for me now, or if it will ever go away. Your post gave me a bit of encouragement though because it never occured to me that maybe the auto-immune sides just take longer to go away.
I'm curious about this too. I'm dealing with hyperthyroidism and, from what I understand, it's an autoimmune situation where the thyroid attacks itself. This is all new to me and I'm just learning about it. Right now the doc says stay home for 10 days and give the anti-thyroid med. time to work. (and I JUST adjusted my work hours to 1/2 time.) I sure hope it goes away after tx, but I have a feeling it was coming on before I even started tx. Who knows, there are just so many meds and sx! Anyone else with hyperthyroidism?
I am at week 20 of Pegetron combo, virus non-detectable at 12 weeks. Lately I have been having tingling in my hands and feet, and its progressed to the point where the palms of my hands and soles of my feet feel like they've been beaten with a stick. Very occassionally its so bad that I have a little trouble walking.
My GI said it was an autoimmune reaction and that it usually goes away after treatment, however in rare cases the damage can be permanent.
This sounds like peripheral neuropathy. Is peripheral neuropathy only associated with cryoglobulinemic vasculitis, or is it a separate condition? Is the Rituxan used as a treatment for the cryoglobulinemic vasculitis or is used to treat peripheral neuropathy on its own.
Any help or info on this would be appreciated.
Willing: I hope you are doing well after completing your tx, other than the autoimmune issues. Glad to hear that you are finally finished, and hopefully you will become SVR over the coming months and years.
Now for the good news: I just got my viral load results back today from the three month, post therapy, RNA test and it was still negative...undetected...<10 IU/ ml.!!!!! My one month post tx PCR was also undetected as I indicated in previous post.
I am obviously extremely excited. As you know I did 72 weeks high dose Peg-Intron and 1200 mg Riba, since I had been a previous relapser (1998-1999 tx). I am a 1-b, age 55, male, and have had this for at least 28 years. I am happy to hear so many type 1's are clearing and achieving SVR these days. It is very encouraging.
As for the autoimmune symptoms after tx, as you know I have been concerned about post-tx symptoms since the first two weeks after finishing tx. I truly believed it was RELAPSE!! I have had arthritic symptoms, facial rash (lupus-like), itching, tinnitus, depression,dry eyes, and fatigue....The good news is that in the last few weeks I feel these symptoms slowly abating, and I am beginning to feel good again, on and off. Lot of bad days, or even hours, but also lots of good days! This may linger for a good while, but I will not care as long as I remain undetected. If it takes five years to regress some of the liver damage, and slowly lose the auto-immune sides, or HCV induced conditions...so be it!!! I will gladly deal with it.
Best of luck to you, and hang in there! I am hoping for your SVR!!!! Keep us all updated on your progress.
wah-HOOOO! That is wonderful news. After all you've been through, relaspse would have been a bitter pill to swallow. I'm very happy for you and I'm sure your results will encourage Mike Simon, Layla, Timbo, Scott and others slogging through extended tx. It's also good to hear your sides are subsiding. If the progressive drug accumulation documented for pegasys also applies to pegintron and extends throughout tx then it makes good sense that you should expect a slower than usual recovery. But never mind the sides, it's time to celebrate!
Willing, I have not been doing anything (significant) to treat it, only because nothing seemed to help while I was on treatment and because I have just been hoping it would go away on its own. Thank you for the information on the UV treatment, all new to me. It sounds like it's worth a try. The funny thing is that I was in a study throughout treatment, and when I went for my 6 month post treatment PCR, I spoke to my doctor about it and he was very quick to tell me that it could have NOTHING to do with treatment. Almost TOO quick, like he din't want to deal with it. All I know is I never had this prior to treatment, and now I seem to be stuck with it! Thanks for the good info.
thanks for the feedback. This forum can be invaluable for sharing information about infrequent complications (which the drug companies are probably not anxious to advertise). Let's hope the fallout from revving our T-cell response into overrdrive for months is not permanent...
pegory: It's good to hear from you and to know your fingernails and psoriasis are doing better. I remember you responded to my first post on this forum and the trouble you were having gave me a good perspective on how relatively minor my own problems were.
Kathy: Are you currently doing anything to try to clear this up? If you haven't talked to your dermatologist about UV (light box) therapy yet it might be a good idea. There's not much published on the psoriasis<>IFN connection (that I've been able to find at least) but the following recent case <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=10971502&dopt=Abstract">study</a> suggests UV is a good strategy. I've been going 3 times a week for about my last 24 weeks and though it didn't lessen the plaques it has helped reduce the itching. Now that I'm not taking more IFN I'm hoping the UV will help get my skin back to pre-tx levels.
Here's the text of the study:
<em>Sir , The immunomodulatory, antiproliferative and antiviral properties of interferon-alpha (IFN-) have been exploited to treat a number of chronic and life-threatening conditions, including hepatitis C. Common side-effects include fever, chills, myalgia, arthralgia, fatigue, marrow suppression, nausea, vomiting, diarrhoea and alopecia. These symptoms often far outweigh the benefits of treatment. 1 We present a case of the less commonly described symptom of psoriasis exacerbation on IFN- therapy.
A 56-year-old hepatitis C positive man with chronic persistent hepatitis was started on recombinant IFN-2b subcutaneous thrice weekly injections of 3 106 IU. He was otherwise well, drinking no alcohol and on no other medication. One month later his minimal psoriasis had evolved into plaque psoriasis covering 20% of his body surface. This failed to respond to treatment with topical steroids and vitamin D analogues. IFN- was discontinued after 4 months because of persistently elevated aspartate aminotransferase levels and positive hepatitis C RNA. The psoriasis persisted but responded to a 6-week course of broadband ultraviolet B (UVB) phototherapy. Six months later he was started on a trial of IFN- and 200 mg of tribavirin three times a day. One month later his psoriasis relapsed. After a total of 6 months the antiviral combination therapy was discontinued because of a lack of response. Again the psoriasis remained but responded to a further course of broadband UVB phototherapy.
The temporal relationship suggests that IFN- is capable of exacerbating this patient's psoriasis. This association has been previously noted in patients with standard plaque psoriasis, human immunodeficiency virus-associated psoriasis and psoriatic arthropathy, 14 and in the treatment of hepatitis C and other chronic conditions. 1, 26 IFN- stimulates a Th1 T-lymphocyte response, 1 which has been reported in psoriatic T-cell infiltrates, 7 and this may be the mechanism promoting the psoriasis exacerbation. However, serum IFN- does not correlate with psoriasis activity, 8 and high doses of IFN- have been reported as causing partial and complete remission of psoriasis, perhaps because of its antiproliferative properties. 9 Not all psoriasis patients develop IFN--induced exacerbation and this probably reflects the heterogeneity of the condition. </em>
I had all the sides in the book except the real tough joint pain. Skin problems were my worst side. I stopped ALL my meds when I finished tx....even those for the skin stuff. After I finished it was like I s-l-o-w-l-y reached a series of plateaus. VERY subtle stuff. Within 2 weeks my "fog" was gone. The skin problems still cycled in and out but I began to notice that the severity was less each time and the time in between was longer. I slowly began to put the weight back on and my hair came back pretty quickly. But everything happened like it was in slow-motion. I would just be sittin here and think..."Hey, I haven't had THIS problem in awhile". I finally decided that I actually felt GREAT. It all took about 5-6 months to get to that point. It has continued to get better. Now, after almost a year, I still get the occasional rash but its always just a small thing and goes away within a day or 2. Since I had some minor problems like this before tx I don't think that these are related to my tx at all. Hopefull yours will do the same.
WOW...THAT is really some GREAT news man. To be clear at 3 months is sure a good sign. I really don't think the length of tx has much to do with the recovery time from the sides. Give it 6 months and see where you're at then. How convenient that your BIG 6 month post tx test will be due at the same time. If you're still clear then, I'll be linin' up the WHOLE HERD of cows here for a good "tippin" in your honor. Hopefully the snow will be gone here by then so it will be easier to sneak up on them......
HEY....HOW THE HELL ARE YA GIRL? I thought you dropped off of the planet. I had you pictured laying out in the sun on the beach on some tropical isle somewhere, sipping a latte', catchin some "rays", and drivin the young boys wild. Basically basking in the afterglow of your successfull tx. WAYYY too busy to come back here and yak with us. Hahahahaha Kinda nice to have our brains back isn't it? It was a LONG trek through our tx but hey....we still managed to have some fun through it all didn't we? AND...WE SURVIVED!! I hope your after tx life is as good as mine is now. Good to hear from you......
By the way gang.....I just had my 1 yr post tx blood draw done today. PLACE YOUR BETS!!
First off, congratulations to doubledose, keep it going for the next pcr... willing I'd like to slide a small new question in here, please excuse the interruption...
How many of you that did 48 weeks or longer had a harder time towards the end? I feel like I'm back in the first 6 weeks again, 5 days after the shot and I still feel like hell. Is this gonna happen every time till I'm done, or is it an occasional thing like most of the rest of tx?
Yahoooo. What good news to hear today. Congrats to you. I am having a frined visit tomorrow who completed 48 weeks pegintron combo and is now on infergen/riba. I will show this to her as encouragement. Once again yahoooo!!!
Willing, FYI I was positive RA factor before tx and my hepatologist said for me not to bother to get retested until 6 months post tx. Hope your psoriasis clears up. My daughter has it so I can understand the problems and fustration.
AKhepper. I'm on week 47 and my sx were much worse for month 10 and 11. This week they finally seem better. I didn't have any in the beginning and then mild ones so I was surprised. Hope you feel better. LL
Hey Indiana!!! Good luck on your one-year PCR! I just know it will come back negative. You're right - I have fallen off the face of the earth! I really HAVE been basking in the afterglow of my successful tx! Everything you said (except maybe the part about driving the young boys wild-but I may try)- I've been doing. Plus I've been making up for 48 weeks worth of things I neglected - cleaning my house, talking to friends and family, socializing, work missed because I was sleeping on the floor in my office when I had days when being in an upright position wasn't an option! I've had to brown-nose my boss after the riba rage took control of my mouth right before I took medical leave. I have such respect for everyone on this board who are going through tx and those who aren't. I swear I would have quit my treatment if it hadn't been for you, Activist, Lize, cc2, Sunny1, Barry, Magnum, Blueskies, Erin - and everyone on this board. Indiana, I hope you are feeling great and pass the big test!
P.S. did I tell you I was born in Gary?
Most of the time, being saturated with Pegasys protected me from huge sx following shots... I had a tougher time in general in the late 30's and early 40's; the last several weeks slipped by, but shot #48 was a Mack truck deal. Still, the clock keeps ticking, and we get through, right buddy? It sure gets old...
I think towards the end it very much a head thing, too.
See you at the finish line!
Willing, Hi....I had a bad time with skin problems years ago, long before tx. I don't remember what I had exactly, but my hands would blister up, and then the blisters would open and it would spread. It itched sooooooooo bad that I would scratch my hands in my sleep. My hands would crack and bleed. I was very young (teen yrs). My doctor gave me periactin and predisone pills, some kind of shot that would make me swell and a cream called synalar. He also used that uv light on me. This went on for many yrs. When I was about 20yrs old I worked in a daycare. I plugged in a bad drop cord and fire went up the wall and out the ceiling. I yelled for my kids to go outside....all I could think of, was getting the wire outta the socket, so I reached for it again. This time it knocked me to the floor. It burned my right hand so bad that my fingers looked like burned grey charcoal. I went into shock. It took a while for my hand to heal, but get this....my allergies on me went away!!!! My daughter and granddaughter both have the same on their hands. I have been treating my granddaughter for two wks now w/ synalar cream, generic name is Elidel. Her hands are also completely well now. I hope you get better soon. Prayers to you, Cindee
doubledose....what can I say???? GREATTTTTTTTT News!!!!!, Much Love, Cindee
Congratulations big time on testing clear. What truly wonderful news! Willing is right when he said this will be encouraging to those of us doing extended tx after a previous relapse. I've done 1 year as of today or yesterday and will try to go till June 20th. So thanks for showing that it can be done - you're one of the few I know who have had this result after relapse. Good luck. Mike
almostdone: thanks for that post- if the UV bulbs don't do the trick in 6 months or so maybe I'll switch to just putting my fingers in the sockets. Never underestimate the power of alternative therapy!
indiana: take care man. The chances of good results are SO high now it's time to be careful. This could be a sting operation set up by the USDA to check out reports of instability and other mental health problems among Indiana cows. Better switch to bulls while you're ahead..
mike: many congratulations on your year-in-the-fog anniversary. June will be here in no time. Do you know of other 1 relapsers who have responded to retreatment? In my short time around here this is a first.
Thanks for the info on hyperthyroid. My GP increased my dosage of beta blocker today and my GI decreased the pegasys to 1/2 dose. I'm calling tomorrow to make an appt. with an Endo. (had to get a referal from the GP). I will ask her about the test you described. I don't see the "clinical implications" part of the review that you referenced. Is there a way I can read further beyond just the abstract? I'm wondering if I'll get into the Endo. before it's too late! I'm on wk. 14/24. Thanks again, good wishes, caruu
Here's a recent <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12930598&dopt=Abstract">review</a> of IFN-induced thyroid disease and a <a href="http://www.endocrineweb.com/hyper1.html">summary</a> of hyperthyroidism, including treatment options. Looks like your hunch is right - IFN therapy often triggers thyroid disorders (hypo or hyper) in patients who already had detectable TPO antibodies. Anyway, presumably what matters the most at this point is what to do about it. From the last paragraph ("Clinical Implications") of that review it sounds like there is a variant of hyper in which discontinuation of IFN rather than the anti-thyroid meds is advisable and that a thyroid scintigram is the key test to distinguish the more common <a href="http://www.med.harvard.edu/JPNM/TF94_95/Sept13/WriteUpSept13.html">Grave's </a> variant of hyper from a destructive variant. It might be worth asking about running one of these rather than just waiting to see if the meds work. Best wishes.
They are few and far between in my experience. I do know of a couple though. One started interferon in 1998 3x a week and I think 800 mg. ribavirin though I'm not sure about the ribavirin - he may have done monotherapy. He cleared and relapsed and then started on pegintron/ribavirin and did that for 4 years, I think. My impression is that he was doing this as almost a manitenance program but I'm not too sure about this. He cleared in the 5th year and is an SVR as of the last I heard. That was probably 1 year or 1 year and a half ago. He is a transplant recipient and the folks at the center were surprised to say the least. I'm trying to think of the other one or two I know or have heard of but memory fails me now. If I remember I'll post the details. Mike
caruu: try clicking on the "Ingenta select" icon on the Pubmed link, and, when the document select page comes up, select PDF and click "Request document". If this doesn't work, I can mail you the pdf. Here's the text from that section of the paper:
From the evidence presented above, the incidence of clinically
relevant AITD is high enough to advise regular (e.g.,
every 2?3 months) monitoring of TSH values in females and
in patients with TPO antibodies who will be treated with
IFNa. When hypothyroidism occurs, thyroxine therapy
should be started, and there is no good reason to withdraw
IFNa treatment. If thyrotoxicosis is diagnosed, it is advisable
to perform a thyroid scintigram. In the case of a homogeneous
uptake, Graves? disease is diagnosed and should be
treated accordingly, and IFNa may be continued. On the
other hand, if the uptake is low a diagnosis of destructive
thyroiditis is made. Although this disease is usually transient,
there is no effective treatment, and only in these patients
discontinuation of IFNa therapy may be considered.</em>
AITD is autoimmune thyroid disease, TPO is thyroid peroxidase and thyrotoxicosis is one of two forms of hyperthyroidism. An IFN dosage reduction at week 14 is best avoided...maybe you could talk one of the other Drs into scheduling the scintigram while waiting for the endo appt?
joni: yes, I believe TPO and TSH tests are a routine part of baselne screening.
You state: "An IFN dosage reduction at week 14 is best avoided...maybe you could talk one of the other Drs into scheduling the scintigram while waiting for the endo appt?:
Are you basing this on standard thinking re: geno 1? I'm 2a, 140,000 vl, 14/24, undetectable. I spoke to pegasys (assist) and was told that it's quite possible for me to continue on to SVR with the lower dosage of pegasys. They advised me to ask my doctor for a PCR sooner than 24 weeks (~18 weeks) to ensure I'm still undetectable. Does this jive with your thinking? Thanks, caruu
Hi, the standard study on tx adherence is by McHutchinson et al. Here's a <a href="http://www.hivandhepatitis.com/hep_c/treatment/pegylated3.html">summary</a> of some of their earlier data and a later <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12360468&dopt=Abstract">journal paper</a>. As you can see, adherence is important for 2/3s as well as for 1s. Apparently there were some results presented at the last AASLD suggesting that less than 24 (16?) may be sufficient for 2/3s but I haven't seen the paper. Checking whether the IFN dosage reduction is necessary (in addition to the thyroid meds) seems a prudent thing to do: you don't want to dilute those excellent 2/3 SVR odds if you don't have to! Best wishes.
I hear what you are saying. This is complicated. If my dose is reduced because of the the low wbc, then perhaps I should be getting Neupogen. My docs office claims they lower dose all of the time and people go on to SVR. Pegasist agreed when I spoke to them. I'll see my GI in person on Feb 9 so I sitll have 2 doses to take before I see him. I'm getting wkly blood tests with call back from the nurse to tell me what dose to take.
You have shown me indication that my dose should (possibly) be stopped because of the type of thyroid damage. I believe my GI and GP are of the opinion that they are working to get me through the last 9 weeks of tx and control my thyroid. No thought has yet been put into long term tx for the hyperthyroid. I see my GP on Monday.
Here are the questions you have brought up:
1. Can GP do the scintigram test (prior to Feb. endo visit) to determine the type of hyperthroidism and then work with my GI to decided if I should continue interferon?
IF I CAN STAY ON THE INTERFERON - THEN
2. Can my GI do something to get my dose back up to the higher level so I can ensure I stay undetectable? ie. neupogen, procrit, or at the very least PCR at 18 weeks.
3. Can my GP/GI work to get my endo appt. sooner to evaluate the interactions of the interferon/antithyroid/type of hyperthyroidism.
Did I get all of this right? I will add it to my overall chart I'm keeping so I can be armed for asking the right questions.
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