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McKenna

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 #1 
Ah...autoimmune disease...the gift that keeps on giving!

I have Hashimoto's, d/x with MCTD and fibromyalgia, and now my rheumy is looking at autoimmune hepatitis.  Sheesh!!

I haven't posted in a while, but last Fall my rheumy put me on a trial of methotrexate.  I felt so much better on the mtx, less pain, more energy.  But, my liver did not like the mtx and my liver enzymes went up significantly.  I have had weird elevated liver enzymes for about 17 years, off and on, never super high and several doctors have mentioned that I may have an autoimmune issue with my liver, but never pursued it because they were not super high.  I had one liver antibody test, AMA (anti mitochondrial ab) in 2015 and it was negative.  Long story short, my rheumy put me on the mtx and the idea was to see if it would help with the MCTD symptoms and possible any autoimmune liver issue.  After my liver enzymes went up significantly, she took me off mtx in January.  Within 2 weeks of stopping it I felt horrible, and have remained feeling horrible to date.

In the meantime, I got in to see a GI doctor this week to discuss the possibility of AI hepatitis.  She ordered a bunch of blood tests, which are starting to come online and I can see a positive anti smooth muscle antibody, but a negative anti mitochondrial ab.  I don't know if you need both to be positive for AI hepatitis?  And my serum protein Alpha 2 is high, which I think means acute or chronic inflammatory disease.  So, I have a liver ultrasound scheduled and a liver biopsy which they are trying to schedule.  Not looking forward to the biopsy at all!

Also, my rheumy had me take the Avise blood test and she sent me the results.  I don't know how much stock to put in it, but I am listed in the "low likelihood of SLE" category.  My ANA is still positive, but has changed.  It was previously 1:160 two years ago (last time they ran it) and now it's 1:640.  The pattern has also changed.  It was previously "speckled" and now it's "h0m0geneous and discrete nuclear dots".  I'm thinking the dots might be another way to say "speckled"?  Anyway, my anti ds DNA and anti smith are negative, as are all the rheumatoid antibodies.  On the Avise lupus graph, I'm listed between -1 and 0, which is labeled "indeterminate".

My next appointments with my rheumy and the GI doctor aren't until June.  I feel back in that weird autoimmune limbo of trying to figure out what's wrong and physically feeling awful.  We are going to Disney again in a few weeks and I'm going to try to forget some of it for now and just focus on having fun.  I have to start a steroid boost when we leave so I can function better while we're there.  Ugh!  So tired of the prednisone!

I would love to hear from anyone who has AI Hepatitis or who has been on Imuran or Cellcept.  Those are two meds the GI doc told me we would try if the AI hepatitis tests came back positive.  Also, if anyone has any idea why the ANA pattern changed or if it is even significant, I would like to hear about it.  I know ANA can change, positive to negative and the numbers, but I didn't think the pattern would change.

TIA!

edit: it won't let me post h0m0-geneous!  Pretend the 0's are o's.

Baker1

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 #2 
I took Imuran for about 2yrs but it didn't do much for me. I was then on methotrexate for about 4yrs. It seemed to help at first but then the RA got worse. I can't real tell you much about Cellcept at this point in time. I started it in February and seem to be ok until my rheumy upped the dose in March. But after a couple of weeks of being sick I realized that I mixed up several of my meds so I was actually taking too much Cellcept and completely missing another med. But I also did that with several of my other meds too, at the same time. I see my rhuemy on the 24th. I had called her office when I was sick and the doctor covering for her cut my dose until my doctor got back from vacation.
Sorry that I wasn't much help about Cellcept.

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"I was chasing my dreams, but tripped over reality and busted my head on the truth."
seadancer1

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 #3 
Dont worry too much about the biopsy....I've had one and it was comparatively painless. The pain if any is from the local anesthetic...none from the biopsy itself..and it is very quick, the biopsy taken before you have a chance to realise, with a needle. I had presented at hospital a nice shade of yellow, and an extremly high liver count was found...they kept asking me how much I drank...I presume alcohol, which annoyed me very much as I dont drink it at all. Biopsy showed Hepatitis...further tests diagnosed Autoimmune Hepatitis...diagnosed with Lupus shortly after when further tests were done. After a lot of juggling with dosages I am now on low dosage of Prednisone and Imuran, and my liver count is kept only slightly above normal with this.
Chin up, my thoughts are with you.
McKenna

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 #4 
Thanks for the replies!
I got a message from the GI who is ordering more tests.  Hopefully I'll know more this week.
McKenna

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 #5 
I had my liver biopsy this week and it was incredibly painful, much more than I anticipated. The doctor said some people don't get much pain, and some people get a lot. Even with the fentanyl and versed during the procedure. After it, I had to lie on my right side for almost 2 hours to prevent bleeding. I am still a little sore 4 days later. I am thinking it's because they went between my ribs? It felt just like when I had cracked ribs, but also pain in my right shoulder, which the nurse said is referred pain and common.

Anyway, the results said there's no evidence of autoimmune hepatitis, which I'm very happy about. I have the liver ultrasound next week to check on things.
upstater

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 #6 
Sorry to hear it was painful, but glad it didn't show autoimmune hepatitis.
McKenna

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 #7 
Thanks!  I'm really glad it's not AI hepatitis too!
Raglet

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 #8 
Just re. changing ANA patterns - yes that can definitely happen. I am mostly speckled, but from time to time it changes to h...genous, and once I had h...genous 1280 and speckled 640 as I was changing from one to the other. My rheumie says that changing patters can happen occasionally.
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