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Multiple antibodies and elevated liver enzymes

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7 years 8 months ago #62400 by Mickeydonald177
Multiple antibodies and elevated liver enzymes was created by Mickeydonald177
My 19 year old daughter was diagnosed with ITP last fall when her platelets dropped to 19,000. The hematologist tested for many other autoimmune issues and found she has a positive Direct Coombs, anti phospholipid antibodies and lupus anticoagulant as well. These were all retested and confirmed after 3 months. ANA was negative. Now her liver enzymes are twice the upper limit and testing has begun to determine the cause. Possible auto immune hepatitis according to the hepatologist ...

She has been treated twice with steroids, but drops immediately afterwards. Planning to try rituxan next week.

Has anyone else had these same issues? She is a first year college student attending school in another state and this has been so difficult for all of us, but especially for her!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 8 months ago #62401 by Sandi
I doubt that anyone here has had all of those issues, although a few people have had some of them. She sure has a lot going on and it's a good thing her doctor has been so thorough.

Has she been tested for Hepatitis B? I'd make sure that was done before using Rituxan. Rituxan can reactivate Hep B.

Since she has the Lupus Anticoagulant, you want to be careful that her counts don't get too high. That's hard to control though.

Has her red cell count been normal? Since she has a positive Coombs, has she been diagnose with Evans Syndrome?

What are her counts? Does she have any symptoms? Sometimes not treating can be an option.

Sorry for all of the questions.
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7 years 8 months ago #62402 by Mickeydonald177
Replied by Mickeydonald177 on topic Multiple antibodies and elevated liver enzymes
Thank you for the response!
She has been cleared for Hep B.
Red counts are currently normal, so while she has the antibodies, they don’t seem to be causing noticeable destruction at the moment. The Dr counseled that if we begin to see anemia, then she would be classified as Evans.

After a round of dex, her platelets will increase from 14 to 165 but drop back to 40 within 10 days or so....very frustrating and she had many side effects, so the dr doesnt want to continue using steroids.

She has been taken off estrogen based birth control and had an iud placed to avoid increasing the risk of clots. It is difficult to balance the bleeding disorder and clotting issues!

Current platelet this week is 40 and declining. As far as symptoms, she bruises very easily, has petechiae when counts drop below 25 and is incredibly exhausted all the time. I assume that a revved up immune system is the cause of the exhaustion.

Any advise or thoughts are so appreciated!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 8 months ago #62403 by Sandi
Dex is usually not a good way to go as far as long-term treatment. Nearly everyone experiences the fast rise and quick drop, and the side effects are horrible. Not worth it.

Yes, it can be difficult to manage bleeding and clotting at the same time which is why it's good to try to avoid clots in the first place. Once that happens, blood thinners are usually needed which can be quite a juggling act with low platelets. I'm glad she was taken off of birth control....that can be a concern with the Lupus Anticoagulant.

Fatigue can be due to both the treatments and low counts. Steroids will cause fatigue and the affects can last a while, usually weeks to months after a person stops taking them. Hopefully she will have a good response to Rituxan without any problems. It can take 4 to 12 weeks to kick in after the first infusion.

You seem like you've been reading up on all of this. Knowledge is the key!