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Autoimmune issues?
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Topic: Autoimmune issues? (Read 1134 times)
fenderblaster
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Autoimmune issues?
«
on:
December 06, 2008, 06:06:48 AM »
I was reading Kats Q&A about trial Tx and noticed, again, that Tx seems to have some residual autoimmune issues that flare up. If I read that right can someone tell me more about what's up with that? Is it a common problem with Txers?
What sort of consequences Are there indicators?
Thanx gang
Mike
BTW.....I feel absolutely fantastic but still look like a corpse on a bad hair day
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You don't give up because you get old.....You get old because you give up Doyle Brunson
Pancho and Lefty
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Re: Autoimmune issues?
«
Reply #1 on:
December 06, 2008, 09:52:11 AM »
Hi Mike,
This is something I'd like to know more about also. It seems like the amount of pre tx testing for possibility of autoimmune responses varies widely from doc to doc.
Good to hear you're feeling better.
Max
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geno 3A--24 wk tx--SVR
"Love is just a song we sing. . . fear's the way we die. . . . "
emkins1
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Re: Autoimmune issues?
«
Reply #2 on:
December 06, 2008, 12:33:00 PM »
This is my humble opinion, but it makes sense to me:
It appears that interferon triggers autoimmune responses or makes pre-existing ones worse. Many patients end up losing their thyroid function after treatment. Others have diabetic issues. Practically everyone's arthritis gets worse, and others complain of fibromyalgia. And then there are the rashes and itches, diarrhea, and mouth sores. All conditions are at least partly caused by the person's own immune system.
One of the ways interferon works is to cause fever and inflammation, thus "cooking" the virus at higher temperatures than it can survive. But inflammation causes discomfort and damage in the patient. Usually with time these effects from generalized interferon-induced inflammation disappear when treatment is over, but it seems like an awfully long post-treatment wait.
I've also read that even without interferon, hepatitis C patients have autoimmune problems because their own immune system stays so active trying to fight the virus. That's why people who haven't treated and may not even know they have hepatitis C complain of increased aches and pains, diabetes, and thyroid problems.
Em
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19Dragon52
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Re: Autoimmune issues?
«
Reply #3 on:
December 06, 2008, 01:43:54 PM »
{{{Emkins}}}
I think you have summed this all up pretty darn well!
I'm sorry I am going to go into so much detail in the body of this post but if someone else may be experiencing anything similar it may give them some direction as to the possible cause or an altenative to examine.
Close to before I started Hep C TX (1-2 years) my body in general along with my autoimmune issues went absolutely crazy! My poor motor skills also exasperated my arthritis after each fall or bump to a point I was unfamiliar with. I was also experiencing pain & problems that none of my doctors or "ER" could explain. Once, the writhing pain through my entire torso took me to the "ER" for 3 days straight. They did every kind of test that was comprehensible and came up with, "Squat!" They were looking for Pacreaitis, Appendicitis, etc. They even did a CT and another unfamiliar test. At one point they had to knock me out because we are talking 3 days straight with no sleep possible.
Finally!
There was a different doctor in "ER" that came on board the third day and told me he thought it was time for me to consider treatment for my Hep C. Bless his heart! This was all back in CA. I had medications plenty from then on to see me through all of the painful ailments.
When I moved here to NY I had a gastro doctor that was willing to let me try TX. I had trouble in CA due to Psychological Issues so no TX was being offered. I started TX here in 2005 and ended in 2006. During that time on SOC I all of a sudden had fewer physical problems. Well after TX I felt like a new person up until @ the 2 year mark..
NOW
2 years Post TX w/ SVR I am beginning to experience the Rheumatoid Arthritis more so than previously, my IBS comes and goes with little warning (I don't know if that's autoimmune) and the regular Arthritis is a p*sser. I am also suffering some Neurological problems but the source for those could be my "psych" meds. It all continues getting worse.
I guess what I'm getting at is: After being off tx for 2 years with 2 years SVR I am beginning to experience the same problems that I had before TX only to a higher painful degree. I had a reprieve during and 2 years after TX of the exact same health issues. Most of the issues I have do not take age into consideration so I doubt that it is the extra years on my life.
I don't know if this will be of any help to another and isn't just babble. I hope it's useful, though.
Much Love.....
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~We Cannot Fail Unless We Quit Trying~
Love,
Joyce aka 19Dragon52
MissyMouse
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Re: Autoimmune issues?
«
Reply #4 on:
December 06, 2008, 02:41:22 PM »
If you go to the actual drug insert for PegIntron (I never checked the one for Pegasys but assume it's the same), you will read that there is a chance of people coming down with auto-immune issues. The web site is
http://www.spfiles.com/pipeg-intron.pdf
In my particular case this is what happened to me:
1. Thyroid Disorder: I already had hypothyroidism when I started treatment. I was taking 50mcg of Synthroid a day before I started my first round of treatment in 2006. I'm now 52 weeks in to my second round of treatment and have had 3 adjustments to my Synthroid and am now up to 112mcg a day.
2. Rheumatoid Arthritis: My mom had severe Rheumatoid Arthritis and was in a wheel chair. I had actually tested positive for the Rheumatoid Factor back in 2000 (6 years before I ever attempted treatment for hep) and never knew it. I was warned by my GI before I started treatment that due to my direct family history of RA that I would be at increased risk for and active form of the disease. At around my 40th week during my first round of treatment (February, 2007) I had my first RA flare and now have an active, progressive form of the disease. Know one knows for sure whether or not I would have come down with a progressive form of the disease or not due to my family history, but they do know that Interferon definately insulted the situation.
Mouse
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1a, Stage 4, cirrhosis
Round 1: 48 weeks from 5/19/06 - 4/13/07
Relapsed 9/24/07
Round 2: 72 weeks from 12/11/07 - 4/21/09
Relapsed 5/27/2009
Round 3: 48 weeks from 12/2/2009 - 10/27/10
Third time's a charm ... SVR BABY!!!!
nialla
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Re: Autoimmune issues?
«
Reply #5 on:
December 06, 2008, 03:19:55 PM »
hi all;
prior to doing tx, i had no symptoms,
but during tx i had several side effects;
most of them went away post treatment;
the primary ones were skin rashes, headaches
and joint pain ... now it's been almost 2 years since
i've been clear and off treatment and i'm doing ok ...
however, i have a friend who is 47,
he's a 1a stage 2 and has not treated yet and he is having
many symptoms which his doctor says is ALL because
of being hep-c positive.
i'm not sure if these are "auto immune" but he is suffering
from the following:
chronic joint aches and pains and swelling
carpal tunnel syndrome
prostatitis, groin pain ...
fatigue, depression ... the list goes on and on ..
i'm not convinced that all of this is because he has hep-c
i mean--who really knows, right?
*nialla
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wings
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Re: Autoimmune issues?
«
Reply #6 on:
December 06, 2008, 03:32:38 PM »
Hi
I am 2 years post tx. Joint pain, migraines, severe fatigue. Doc in NYC infectious disiase spec is trying gammglobulin and if that doesnt work ampligen (FDA approval hopfully in Feb) Test showed EBV and HVV6 numbers very high, activated, which is a secondary viral infection that most of have but just not activated. Also the IG M level (immune system) was very low. So I am not fighting it. I have been going though every test from brain tumors to heart and kept comming up fine. The diagnosis is post infereron chronic fatigue syndrome.
sheila
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4 years post tx, SVR
geno 2a stage 1
19Dragon52
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Re: Autoimmune issues?
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Reply #7 on:
December 06, 2008, 03:51:31 PM »
{{{Hey Mousie}}}
I forgot...I also had hypothyroidism diagnosed when I was in my 20's. The dosage for me never changed, throughout, though.
Of course the doctors here in NY couldn't be bothered with having my records faxed to them from CA so I was starting from "0" with them. I would tell them what I knew of my own conditions that had recently become a problem since back in CA but, no response. And do I even need to mention for the 1000th time that all the meds for the pain issues (except gastro) went "Bye Bye!" I fussed about it all and even changed some of my doctors but you know the score in this town...nothing got any better!
I read the inserts but like I said the TX and after the TX I was fortunate to have alleviated syptoms from any of my issues. Occaisionally I would have the joint aches during TX but who doesn't? They were quite doable. I guess I'm baffled that what is occuring took as long as it has to start surfacing. You know what I mean?
Lots of Love.....
P.S. (Sheila...Just read your post before I hit mine to post. Thanks for your input...Very Interesting! Maybe I should talk with my Gastro doc. I just haven't wanted to believe any of this could have been from TX since it seems so far down the road.)
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~We Cannot Fail Unless We Quit Trying~
Love,
Joyce aka 19Dragon52
MissyMouse
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Re: Autoimmune issues?
«
Reply #8 on:
December 06, 2008, 04:02:30 PM »
Hey Sheila a/k/a Wings,
Do I know you from "The Hood"?
MissyMouse a/k/a paralegalmf
Logged
1a, Stage 4, cirrhosis
Round 1: 48 weeks from 5/19/06 - 4/13/07
Relapsed 9/24/07
Round 2: 72 weeks from 12/11/07 - 4/21/09
Relapsed 5/27/2009
Round 3: 48 weeks from 12/2/2009 - 10/27/10
Third time's a charm ... SVR BABY!!!!
wings
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Re: Autoimmune issues?
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Reply #9 on:
December 06, 2008, 04:05:13 PM »
absolutly girl how are you. I occassionaly go to the Hood and sheila found me and told me about this place.
Glad to be here with some old friends
sheila aka wings
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4 years post tx, SVR
geno 2a stage 1
MissyMouse
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Re: Autoimmune issues?
«
Reply #10 on:
December 06, 2008, 04:08:58 PM »
I knew it was you.
So nice to see you over here. I'm doing really good for a hepper 52 weeks in to their second round of tx.
Mouse
Logged
1a, Stage 4, cirrhosis
Round 1: 48 weeks from 5/19/06 - 4/13/07
Relapsed 9/24/07
Round 2: 72 weeks from 12/11/07 - 4/21/09
Relapsed 5/27/2009
Round 3: 48 weeks from 12/2/2009 - 10/27/10
Third time's a charm ... SVR BABY!!!!
wings
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Re: Autoimmune issues?
«
Reply #11 on:
December 06, 2008, 04:22:04 PM »
Thank-you and I pray for good news for you. Hopefully you are going through the second round with minimal discomfort. Time has been a blur.
sheila
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4 years post tx, SVR
geno 2a stage 1
Pancho and Lefty
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Re: Autoimmune issues?
«
Reply #12 on:
December 06, 2008, 08:29:03 PM »
Sheila,
Did you clear the hep C virus???
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geno 3A--24 wk tx--SVR
"Love is just a song we sing. . . fear's the way we die. . . . "
wings
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Re: Autoimmune issues?
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Reply #13 on:
December 06, 2008, 08:37:39 PM »
Oh yes I was clear after 2 weeks into tx and have remained virus free since tx 2005. Interferon left me with other issues but it cleared the virus
sheila
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4 years post tx, SVR
geno 2a stage 1
KatNyerHAT
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Re: Autoimmune issues?
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Reply #14 on:
December 06, 2008, 10:35:17 PM »
Fantastic Mike with bad hair days...
That Embly's a smart one, she is.. i agree. I was diagnosed with Lupus post tx but it doesn't mean I didn't have it prior to. They said it may have been predisposition with me, possbily genetics (something I don't necessarily agree with). Most of the meds I was on earlier (prednisone) I couldn't tolerate. NSAID's afterwards which I stopped after celebrex was found to be detrimental in high doses. Now, I'm just managing pain with Tramadol which doesn't really handle it. They watch my labs and with the trial, they didn't tell me length of tx was going to be shortened. Have no idea why not. I did ask about Alinia yesterday and the doc said it was definitely a NO-GO. <shrug> I tried....
Hugs,
Kat
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Geno 1B, non responder after 12 weeks of PegIntron/Riba. Attempted the Telaprevir trial, couldn't tolerate. Stage 4, grade 4 cirrhosis. You should go out an enjoy life! And cherish every precious second of it!
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