Autoimmune Diseases/Hormones/TX SIDES

Hello all, I just finished reading an article in this months REMEDY magazine that may shed some light on hormonal problems (monthly

[whinybutwell]

Thank you....your comments really speak to my post-trx sides that are beginning to freak me out.  I have all the symptoms of an auto immune disease, and they don't seem to be going away, even though i'm almost 6 months post-combo-trx (24 wks; i'm geno 2a).  I don't understand it -- i had high ana and rheumatoid factor pre-trx, but a rheumatologist said he didn't think i had an autoimmune disease, he thought it was just the hep c.  And although it's still positive post-trx, the hep dr said the labs look like it's improving.  But the symptoms don't seem to be.  And the hot flashes got so much worse during and post-trx -- although only from the neck up!  What the heck is that about??!!??  Anyway, thank goodness you said it's brief and will go away-- i pray to god you are right!!

[alagirl]

You know, you didn't say that you had a positive ana and rheumatoid profile prior to treatment.  This is just my opinion from looking at the literature, but if interferon can cause shingles to flare, it is only reasonable to me that it could play havoc with auto immune issues that you already have.  If it caused them to flare, they themselves could be causing your issues.  It could have caused a surge in rheumatoid issues that didn't shut down.  You may need to try treating the actual symptoms, that is, see a rheumatologist, and see if you need treatment for the pain from him or her.  If it were me, that would be my next step.  Also, are you free of the virus at this point?  I ask because I have wondered if there is any link between people who have auto immune issues and people who treat successfully due to their bodies own ability to fight anything new that comes along.  It's a ridiculous far out theory/hypothesis of mine with absolutely no basis in fact, but I thought I'd ask any people with auto immune issues who came along how their treatment went.

[alagirl]

Sorry, nevermind, forget everything I just said.. you saw the rheum dr already and you are still hep c positive.  I'm confused, you are still positive but they stopped treatment?

[whinybutwell]

Thanks for your response.  I'm 5 months post trx and was UND at 3 mo's.  I'm praying that i'll be SVR in a month.  But beginning to worry a little.  The rheum. said he thought it was "just" the hep c before trx, but i'm beginning to wonder if -- as you said -- the trx exacerbated an already existing (though mild-ish) condition (lupus?  fibro?  other?).  I guess i'll give it till the 6 months screening, and if the inflammatory panel is still high/positive, go back to the rheum.  I finished the 24 week trx, and have been UND since month two...so wish me luck.  Your theory sounds interesting...you think that people WITH auto immune disease are MORE likely to clear?  (just capitalized for clarity's sake -- i have no idea...would like to know more about what you think)  

[DoubleDose]

Please look back through the forum archives, and  threads posted over the past six months or more.  We have all contributed quite a lot of information regarding post-tx sx and autoimmune problems.  I am four years post-tx, and SVR, but have lots of ongoing autoimmune symptoms, and blood markers as well, mostly provoked by all the interferon.  The autoimmune issues after tx can feel as bad or even much worse than the HCV itself felt prior to tx.  My concern is that the autoimmune issues stimulated by tx, might end up being as dangerous or even deadly as the virus itself was.  Take a look through prior posts, and you will find lots of good reading.

DoubleDose

[pigeonca]

I had autoimmune skin problems before tx.  During tx they became considerably worse - to the point where I was pulled off tx half way through.  (I'm UND 4 months after stopping, however, so I'm hopefully looking at SVR??)  Since quitting my skin has improved quite a bit, but is far from normal.  

My theory is that my own interferon pre-tx was being produced at such a level that it caused the skin problems.  The additional interferon during tx exacerbated them.  Then being UND, maybe my body is producing less interferon, hence the reduction in problems.

[Valtod]

What is your ANA? Did it improve 6 months post-Tx?

My early post-Tx autoimmune symptoms are getting worse - bad rashes on the neck, more and more spots on my chest and arms. When things get unbearable, I use Lidex cream for a day or two. Then the rash disappears (but dry skin remains), but two days later it comes back with vengeance. I have liver and right kidney pain, worse fatigue than during Tx, high blood pressure, palpitations, can eat only salads and fruit, everything else makes me feel poisoned, bad insomnia and crippling anxiety.

My bloodwork came back - ANA (antinuclear antibodies) is 1:80, which is considered high. TPO (thyroid peroxidase antibodies) - also slightly above norm (36). Can this be AIH? Or another fatal autoimmune disorder?

I never had autoimmune (or immune) problems in my life. Everything that I read now about AIH, Lupus, Sarcoidosis, Hashimoto makes me sick in my stomach. HCV starts to seem preferable compared to what I might have brought to myself by extending Tx. In the last 5 years I've seen probable a dozen hepatologists, some of them considered gurus, and I can't believe no one ever advised me to check my ANA/AMA/SMA and TPO before and during Tx :-(

Thanks.

[Proactive]

"HCV starts to seem preferable compared to what I might have brought to myself by extending Tx" How are you able to differentiate between the post tx sides you are experiencing now after 72 weeks of treatment and any post tx sides you might have had by again,stopping at 48 weeks?(I realize this is your second tx) How are you accounting for cumulative effects of having done both 48(?) and 72 weeks of treatment?

[Valtod]

You're right that once you take one path of action, you can not go back and explore what  exactly would happen if you had taken another path. But you may guess. By week 48 the rash, and the other SX I have now, were relatively mild. Actually, things got really bad between week 60 and 72. I think the correlation between length of Tx and severity of SX during and post-Tx is not really controversial.

But this is not really the point. The point is that if I had the autoimmune panel done before and during Tx, I (and my GI) could make a better decision about dosage and duration of Tx.

By the way, my first Tx was a trial in 2002 and I was stopped at week 28. Between 2002 and 2006, I didn't have any symptoms, comparable to what I've been going through in the last 4 months. And definitely no skin conditions. So, even if the autoimmune issues started earlier during Tx, the last 12 weeks of Tx really worsened them.

[Proactive]

thanks for the input valtod, and I hope you start feeling better soon...as tomorrow, I do shot 48 and prepare for "overtime" myself, so of course these issues are on my mind as well....one thing I know for sure,I want my 6.6 pts of hemoglobin back (g)

[DoubleDose]

My ANA is elevated, but does not fit any particular autoimmune disease 'pattern' according to my rheumatologist.  Who would have believed  how many 'ologists' one would be getting to know after doing tx.  I certainly never had them on my list before tx, and I seemed to have no real problems other than the elevated LFT's. back then.

The amount of information conveyed by the treating physicians dealing with HCV and tx is truly shocking.  There seems to be very little effort or interest around possible damage caused by tx, long term dangers of tx, or finding out what the patient profile might be in relation to autoimmune susceptability, or the development of AI problems during tx.

I still see doctors writing about the generally short recovery period after tx, and a return to normal after a few months to maybe in extreme cases a year.  I do not think that this represents the reality for a large percentage of treaters.  My thyroid was damaged, and I will be on synthroid for life, I have developed the interferon induced AI syndrome my rheumatologist described as being a bit like Lupus, but not exactly!....I feel fatigued way beyond what I was feeling pre-tx, and often have a variety of strange nerve and joint related pains, numbness, and electrical feelings.  I have developed metabolic syndrome, high blood pressure (on medications for the first time in my life), and pre-diabetes.  I often fall into lethargic, weak, episodes, where I feel no energy or motivation...and feel as if I could sit and stare out a window, or just sit and eat, watching the world go by...all day long.  Its really hard to pull out of those cycles.  

I think that the medical community is doing a grave disservice by not aggressively studying and surveying post-tx'ers for the quality of life after tx, and the extent of medical problems that are developing.  Hey, don't get me wrong, I needed to treat, and I needed to extend to 72 weeks to get the SVR (I had relapsed once already), so I am not casting 'sour grapes', but am just upset at the lack of honesty or frankness from the medical community regarding the realities of tx, and post-tx life.  

I think they could start a whole new medical field just diagnosing and treating post-tx problems and illnesses.  I have not yet found one specialist who has any real solutions.  They each seem to know a little bit about the post-tx problems cropping up, but have very little to offer as far as treatment, or advice.  The most frequent response is: hopefully it will fade away over the years'.  Yes, HOPEFULLY!

But I am starting to doubt that it will.

Best of luck to you.  Hang in there, eat well, exercise, and see a very good rheumatologist.  Maybe YOU will be the one to find some answers.  

DoubleDose

[alagirl]

Ok, this is my considered (which means not considered very much) opinion on this.  I don't know much about hep, but I do know about interferon and I guess somewhat about autoimmune since that's my bag (hey, my whole family's bag, we like to share) anyway.

When you asked, "you think that people WITH auto immune disease are MORE likely to clear?"

My answer is this.  I have no idea.  It's a theory that I'd be interested in looking at.  Here's my reasoning in short.  People have autoimmune problems because their systems fight everything, including their own bodies.  I believe this is responsible for my anemia, my own body represses erythropoetin production.  Just a theory mind you.  But, if my theory is correct, it could or might in some parallel universe stand to reason that (unless you have auto-immune hep, another story altogether) your body would fight more strongly against any problem, viruses, cancer, bacteria... than others.  I'm wondering if there is any body of research on this.  So I wanted to look at it.  Purely academically.

The other standpoint, of course, is that people with immune disorders have low immunity and will catch everything and have difficulty clearing.  My view is just different.

Back to the interferon.  I think DoubleDose said basically what I said, Interferon can cause issues and flare ups that last past treatment.  Its not the interferon anymore, per se, but the actual autoimmune issues acting up.  So.  My thought it this.  Get on a good anti depressent if you are not already.  An SSRI.  Why?  Because it will help your state of mind and your body aches to some extent - if you are on the right one for your brain chemistry.  You can't be in constant pain and battle it valiantly with your spirits in the dumps.  Chronic pain IS something I know a lot about and this is my best tried and true advice.  Then, get in wth a doc who BELIEVES you are suffering and get treated for the issues flaring up.  Aches and pains, whatever.  If you can't get dx, at least get medication.

The good news is this.  You aren't on the interferon any longer so eventually, your flare up of the auto immune problem will hopefully abate as it normally would. This is my belief.  But.  I think that a lack of stress provided by tx that keeps you pain free and by treating your spirit with antidepressent medication is very helpful.  Also, there is new research that shows antidepressents help in some autoimmune diseases.  I think this is due to reduction in stress and more helpful outlook.

alagirl - going into it on wellbutrin and lexapro and whatever other pharmaceutical might make me happy ;)

[ponyshel]

I am now 7 weeks post 72 weeks of tx...I can say I felt better before tx at this point. I have been having thyroid issues and I never had the problems before tx. I think mid tx it started going crazy. My gastro stated I should feel good now...yeah right..I am currently seeing an Endo who wants to start me on a med to control my hyperthyroid...maybe..he states that I might have an autoimmune and my thyroid is attacking itself...the gastro said there is no correlation between interferon tx and this...b*llsht...I said oh yes there is...so here I am , feeling worse then ever, waiting for dr.s to tx whatever it may be now...I wish I never txed with the interferon now...its messing up everything in my life..I feel I was better off just not txing and drinking myself to death...I have so many sides and issues medically now then pretx...maybe they want us to be sick forever...good way to make sure they get their moneys worth...luck shelly

[DoubleDose]

Tell your gastro that most competent doctors are fully aware that Interferon OFTEN knocks out the Thyroid, and though many people seem to slowly have their Thyroid recover function, many also do not.  Those that develop Thyroid auto-antibodies are most likely to have permanent damage, and will usually need thyroid medication for life.  I do, and my thyroid went down toward the end of tx.  It never fully recovered, and four years after tx, I am still on thyroid medications...and will be permanently.

Many doctors are extremely in the dark, and clueless, when it comes to the effects, and after-effects of interferon.  I do not think that the big pharmas want the real information to be broadcast, and I never see any attempts by them to educate the HCV population as to the possible consequences of tx....Oh Yes....you can read all the very fine, fine print included with your tx medications, and find it all in there somewhere....so...I guess they really did tell us!

Sorry about your reactions and ongoing problems.  See some good doctors and keep working at finding some solutions to the problems.  I think there is hope.  It just will take time and effort.

DoubleDose

[alagirl]

do either of you have graves?  I've known some people, outside hepatitis, with graves and autoimmune such as lupus.  Maybe look into lupus.  You know, hep c and other autoimmune are certainly not mutually exclusive and since interferon can trigger some autoimmune issues - you might as well get a good autoimmune doc.  And you know, here's my own attitude on docs.  No offense to any docs out there.

Doctors are very high priced well educated contract labor.  I tell them that too.  Some of them have a sense of humor and think its funny.  Most of them don't.  I really could give a damn.  I am the one paying them capiche?  So if they don't treat me the way I want to be treated - I find someone else.  Even for my hep c, they have a great liver center at UAB but they relegate a lot of patients to a nurse practitioner who I think is a moron.

So all the great docs in the world don't matter if you rarely get to see them because their practice is so full.  So I went with a good doc in Huntsville who actually deins to see his patients and whose nurses both care, return phone calls, and remember my case.  It's your body, and you only have one.  You need someone who cares about you or at least pretends to.  My opinion is that if you are going through a sucky time in life you need a doctor who cares.  Find one.  That's just me.  I may be new to hep c but I'm not new to difficult medical problems and the only way, imho to get through them is to find a doctor who takes you seriously and doesn't treat you like a mental case.

And look on the internet.  The effects of interferon are well documented.  I am going INTO this expecting to feel like **** and have sides and I expect my doc and nurses to treat me like gold throughout.  If I don't feel bad then that is just gravy but if at any point they don't take me seriously I will drop them like a lead balloon and change to someone else because I am worth it - and so are you.  I am scared shitless of this disease but I am NOT scared of my doctors.  I HIRED them.  They work for me and they better not forget it.

[alagirl]

about the language.  I just feel strongly about this.

[DoubleDose]

Hey I like your style!  That also sums up my attitude toward the medical profession.  I now have a GP who is very smart, and cares about her (I said HER) patients.  She is one of the best doctors I have ever seen.  She is unbelievably up on HCV, tx, autoimmune diseases,cardiology, diabetes, and just about any other area of health.  She has referred me to several great specialists who deal with people who have post-tx problems.  At least they understood my problems, and had seen other similar patients...as opposed to some doctors in the HCV treatment community who act, and look, like Alfred E. Neumann when you tell them about interferon after-effects, etc.

I am pretty sure that most of my post-tx issues are autoimmune in nature, and my Rheumatologist stated that pretty clearly when he ran a battery of tests on me two years ago.  The only problem is that there is very little treatment appropriate for these problems other than taking very strong medications with severe side effects and long term issues as well.  So for the time being, many of us are stuck with waiting it out, slugging our way through it all, and hoping for some resolution of these problems down the road.

Good luck to you in your tx journey and keep fighting!  Don't take any wooden doctors!

DoubleDose

[whinybutwell]

(I posted a response here about 1/2 hr ago, but i guess it didn't "take"...ah well.)
What i wanted to say was thankyouthankyouthankyou!  I really needed some validation.  I like my doc a lot as a person, but he's an infectious disease doc, and i don't think he has much experience w/ HCV.  And he has been treating me like i'm some kind of hypochondriac/nut-job, or else the world's biggest slacker.  And it's not like i haven't been getting this treatment from everyone (docs, family, coworkers, even friends) for the last 15 years (have probably had the hep c since 1974 or 1979 -- blood transfusions).   The closest anyone could come was Chronic Fatigue Syndrome -- which no one believes is a real disease either!  And now that it's over 5 months since i finished treatment, my doc says i should be all better.  What a joker.  He would only even tell my job that i might have to miss work "from time to time" while i was ON the drugs (Peg and CoPeg -- he's a real laugh riot).  But there was no way i could even drive (if i even had the energy, stamina, mental clarity, visual clarity, and freedom from the nausea, headaches, and body aches) due to my brain fog and confusion, not to mention what they did to my vision.  And now i can drive, but some days i just can't make it out of bed i'm so sick to my stomach, and/or have such  a horrible headache, and/or have diarrhea, and/or ache so darn much, etc!  How do people keep working?  And when are people able to go back full time?  And if you're not, has anyone had any luck with getting disability???  I'm taking my two week paid vacation because i've only been able to work so little since i started back that i will get paid more for not working than working!

Also, several people have mentioned having really good doctors (like the one in Fla), who do understand (even if they do have NP running interference).  Does anyone know of one in Texas?  I live in Austin, and even though it has a pretty large HCV population due to all the musicians and old hippies, i don't know of any big-name docs in the field here.  Maybe Houston or Dallas or San Antonio?

Thank again guys/gals.  Onward through the fog,
whiny