Hepatitis C vs. Lupus

[Not 4 Gotn]

I have HepC, I had an allergic reaction to the treatments and cannot be cured. I also have high anti-nuclear anti-bodies (ANAs).  My primary care doc diagnosed me with HepC, then a year later also with Lupus.  I was sent to a Rheumatologist who insists all my symptoms are related to my HepC, but my gastro doc says they are not.  I have most all symptoms of Lupus.  I have also been diagnosed with avascular necrosis (sp), which I am told has nothing to do with either disease or virus.  I am going to so many doctors and getting very little relief except meds which help, but I want to be taken seriously by my doctors and want answers.  I would welcome any comments or possibly others with my similar dilema.  I have a family, and I am still working full time, but it's hard, and I am wondering how long I may have and am at my wit's end.  This is the first time I have tried to correspond with anyone about my HepC, so I don't know what to expect.

Thanks to anyone who responds!
Not 4 Gotn

[lostforwords5]

Thanks for this post . I just got the word of ANA and Hep C and I knew i had something just had no clue what it was all this is a great help to me. For many year I have been trying to find out why i hurt and ache.. last year i had cancer surgery I have melanoma cancer and now this ... but some how i still see the light i have too i have 2 boys who are under 10 who need me i have to make it ..... They need me and the doc says the test are not done she says she still thinks there is more things wrong ... she says she still thinks there are more things hiding and I just don't know what to do anymore!!!  

[too_much]

There are many types of autoimmune diseases and they often have overlapping symptoms.  I was struck by your mention of reacting to the HCV treatment because I read somewhere here on this very forum of a person who has both HCV and Autoimmune Hepatitis and I believe they said that the treatment for both is not good for the other, but of course I could be imagining things... ; )  Having AIH myself I have researched extensively and can tell you that before being called AIH it was named Lupoid Hepatitis.  I also spent many years seeing different docs and being treated like I was a hypocondriac (sp?) because none of them could conect the dots.  I have 2 relatives with Lupus and it's wierd that we have many of the same symptoms and take the same medication.  Maybe the docs you've been seeing aren't fluent in autoimmune diseases.  It wouldn't hurt to find a reputable doc and ask that they explore all possibilities.

[Not 4 Gotn]

I would like to thank everyone for their responses.  I really haven't talked to anyone who was going through the same issues.  It makes me feel somewhat more sane.  Doctors don't explain things well to me, even when I insist on more information, and I believe they think me to be a "hypocondriac".  At this point, I have 6 doctors, all specialists.  I believe I have been going crazy and just want to stop altogether, but I know I can't.  There are only three things I know for sure at this point.  I have HepC, stage 2, I have avascular necrosis (no one knows why), and I have high ANAs (don't know the level).  My primary said I DEFINITELY has Lupus, and sent me to the Rheumatologist who at first thought it to be Sjogrens syndrome, and now says the results are inconclusive for Lupus or Sjogrens.  My symptoms include:  sores in nose, ears and mouth, pain when breathing deeply, seneitivity to light and sun, intermittent rashes on face and neck, bone & joint pain, arthritis, fatigue, some swelling of lymphnodes in neck and arms, quick weight gain (20 lbs in 3 months, which is unusual) pain in right side, etc.  I am sure you have all heard or felt most or all of these symptoms.  I am on many meds, Plaquinil, Vicoprofin, Fosomax, Zoloft, 5mg valium, Lisinopril, and now they want to add Elavil and Zetia.  I am so tired of taking meds, but there are a few I cannot do without.  There are so many specialists, I don't know which one to turn to.  Any suggestions?  I will pursue a Liver specialist, thanks for that advice.  Sorry to be so inquisitive and long-winded, it's for the first time, I feel I have someone to really relate to.  Thanks again!

[Morgaina]

I went through decades of guessing games trying to figure out what the he!! was wrong with me. I was diagnosed with MS when I was 21, told I had arthritis in my 20's (was really hurtin with it), joined the perifrial nueropathy (dont think I could spell that even if I kept trying)society in my 30's with numbness and pain, looked into lupus (they told my mom she could have it and after reading sounded like me), have had enhanced MRI's that showed damage in my frontal lobes and right lower quadrant, had one of my many vertigo attacks (this time while driving) and drove straight into a tree, (that caused some damage) . All these decades passed when I knew there was something very wrong but every doc I was ever around made me feel I was nuts. Even the doctor that treated me for hepc and arranged many other tests after I hit the tree made me feel like I was looking for attention (by the way, if you really want some action on a long standing problem, hit a tree, it's like they dont have a choice). I found out I had a hole in my heart and an anyurism, no MS and a heart that had been damaged sometime after late 80's. Was it the hepc? (could have contracted as a child) Did it affect my brain, my heart, my digestive system before it found a comfy home in my liver? We dont know enough, get yourself a good liver guy, you'll never know if it's this #@%$# virus unless you can rid yourself of it and see how your body works then....Man, I can ramble on.......sorry

[DoubleDose]

Your sysmptom are all pretty typical of the things that HCV can do.  Many symptomatic HCV infected people have Lupus like sx, and there has always been much literature on the HCV related "pseudo" Sjogrens Syndrome that affects about 35% to 40% of HCV carriers.  I call it pseudo, because the typical Sjogrens markers are usually absent on testing for the syndrome....just as the Lupus markers are not exactly the same, in spite of Lupus-like symptoms and a positive ANA test.  Run a Google or Yahoo search for HCV and Sjogrens....you will be interested in what you find.

So, maybe if you were able to do a successful treatment, you MIGHT end up with a remission of these Lupus/Sjogrens-like symptoms, since they are probably provoked by the HCV itself.  No guarantee though, since the tx itself may trigger more autoimmunity in you, as well.  I do think you are still a complete candidate for tx, since many go into it with the same sx, and ANA markers as yourself.  Maybe one of the newer 'cocktail' tx'es, with weekly interferon, ribavirin, and a protease inhibitor (like the Vertex drug) would be more user friendly for you, and much shorter duration.  We are all waiting to see if these new trials result in SVR's!!!!!  Maybe sometime in the next few years you will be able to do a three month tx with a very high probability of SVR.  

Make sure you see a hepatologist who has a reputation for tackling difficult HCV cases, and getting people cured.  There are many good, knowledgable, and highly experienced ones out there.  Ask the board members to recommend someone in your geographic area.

Good Luck, and don't give up!!!  

DoubleDose

[cuteus]

while you search for new providers, arm yourself with printouts to support your theories.  a good place is natap.org and this site
http://www.medadvocates.org/diseases/hcv/extrahepatic.html

it links you to articles that are relevant to the condition listed

[Myown]

Do you know what your anitnuclear test result showed? Mine is
40 H out of 1:40, whatever that means.

One doc said it was too low to be lupus, but yet no one has been able to tell me what it is.

I'm back to the thinking maybe its low grade lymphoma, because this seems to be a manifestation with some people who have hep. I do have a swollen lymph gland, that I am trying  to get a doctor to take seriously or at least rule out what it may or may not be.

One good thing about low grade lymphoma with hep is, from what I read it seems to clear with tx.

You had mentioned "lupus symptoms," but haven't heard you say you have lupus. Have doctors given you any clue as to what's the reason you have ANA?

Also...did doctors think the ANA may have been the reason for not SVR the first time around? These are all things I will be discussing with the doctor next appointment,but your doctors opinion on it may prove helpful in my discussion with her.

Thanks

[dancegirl54]

I was diagnosed with lupus 8-10 years ago after making the rounds like it sounds like you are doing from primary to rheumatologist, etc.  At that time I was not yet diagnosed with HCV.  It is extremely difficult to diagnose as the ANA levels can be high for other conditions as well - including HCV. HCV can produce auto immune like symptoms.  My experience is that the rheumatologist really made no difference.  You may or may not have lupus but you do have HCV.  When I finally went to hepatologist, NOT a gastroenterologist, he told me in his opinion I did NOT have lupus.  You may want to see a LIVER specialist and address your concerns.  I don't know where you are but I am seen at the Beth Israel in Boston by Dr Afdhal - I am not the first "lupus" diagnosis or misdiagnosis they have seen.  Good luck

[NYgirl]

I don't nkow anything about Lupus but I have hepC too.  I found a LOT of comfort in knowing that I wasnt alone and that there were GREAT really WONDERFUl people to talk to when I had a question.

It helped me SO  MUCH to get out of my own skin and read about other peoples problems and stuff...

I hope that you hang around and post more questions.  I think you will find it really beneficial.

You won't find a nicer group of folk anywhere - even though we can sometimes disagree, we are like family and would do anything we can to help.

[friole]

If you have the time, this is a presentation on hepatitis C by Dr Shiff, a very renoun hepatologist.  You have to register, but it is free.  It is a slide show presentation and has a secion on extra-hepatic symptoms - and there are quite a few auto immune issues, including lupus. If you don't have time for all of it, you could fast forward to the extra hepatic symptoms part.

http://www.clinicaloptions.com/hepatitis/treatment%20updates/hcv%20core%20curriculum.aspx

frijole

[Sweetie6852]

You know I had so many issues, fatigue, aches, joint pain, headaches - you name it and I just deteriorated over a 2 1/2 year period - when I first got diagnosed by my Primary then sent for my biopsy with a local gastro dr. etc - I had a viral load of 15 million and was Stage 1 Grade 2 - that Doctor told me I had a high viral load of a weak virus - since I didn't have much damage and told me not to do anything and the fatigue and everything else couldn't possibly be from the Hep.  I got a referral to the Beth Israel liver center in Boston and found a place that finally did not make me think I was imagining everything - and also laughed when I told them about the weak virus - in 2 1/2 Years I'm in Stage 2 Grade 2 - not so weak huh? Finding a caring - supportive environment meant the world to my well being (now I wasn't crazy having all these symptoms) and to my positive attitude - with the right Dr, support and attitude - I'll be better.

[Not 4 Gotn]

Thank you for your advice.  I was told that I could not continue my treatments because of an "allergic reaction".  I had burning, itching skin with severe redness and pain.  My HepC doc told me it would be too dangerous to continue treatment, but weeks after I stopped the injections and ribovirin, I had the same reaction and thinking it could be something else asked if I could try treatment again.  I was denied, being told it could seriously injure my internal organs (as if they are not already).  What do you think about that?

[Not 4 Gotn]

Thanks for the reply.  I will try a second gastro doc, while I still have insurance.  And, I really do have pain in my right side which has been dismissed as pain in my rib, lupus symptoms, etc.  Am glad to know I'm not completely crazy.  Ever since the liver biopsy, it's gotten worse, I had a horrible experience with the biopsy that was not supposed to hurt, but ended up with morphine and demorall (sp) and a short hospital stay (sp).

[DoubleDose]

I also had Lupus like symptoms over the years, and I am certain they were from the HCV, plus I developed anti-nuclear antibodies years before doing the tx.  I did the tx, twice, over long periods of time (15 months and 18 months), and at very high dosages, and was finally cured!  I am SVR for over three years now, and still have Lupus like symptoms...probably made somewhat worse by the long interferon therapies.

No one ever tried to prevent me or discourage me from doing the tx, even knowing my symptoms, and my positive anti-nuclear antibodies.

I think you need a different HCV doctor, and your Rheumatologist seems to agree.  If he does not think you have true "lupus" then your HCV doctor is really going out on a limb!  and is also keeping you from getting cured.

Don't get discouraged!  Fire your doctor, and find a highly experienced HCV doctor who is familiar with the more unusual manifestations of the disease, including masquerading as an autoimmune disease.

Good Luck!

DoubleDose

[louisianawomen]

Most of us with Hep C do have lupus type symptoms. Find another Liver Doc is my advice. I'd been told by many Docs that the symtoms I had weren't liver related. But the more I talked to Hep C challenged people the more I realized I wasn't alone. So I looked until I found the right doctor. They'll also tell you that the liver feels no pain. And they are correct but our right sides still hurt. Of course we know it's from inflamation but some docs will just flat tell you that the liver feels no pain and go no further with it.