MS and Autoimmune Liver Disease

[WAshingtongirl]

Hi! I'm new here and sure hope I can figure out how to respond to any posts as well as find my way back to this website. I'm wondering if anyone else has been diagnosed with MS and autoimmune liver disease. My rheumatologist is taking the wait-and-see attitude on deciding if Lupus is causing the autoimmune liver disease.

[JMR628]

I was diagnosed with MS in 2014. I was diagnosed with an auto immune kidney disease 5 years prior to that, which was supposed to cause me to need dialysis in 10 years. Both of my doctors said they were unrelated, but my kidney disease went away after I started taking rebif! I hope you find that something similar happens for you.

[WAshingtongirl in reply to JMR628]

Thank you! And I'm sorry about your kidney disease, but so happy to hear about the reversal.

My doctors believe antibiotics to treat a persistent UTI (during an MS relapse) initially 'caused' the liver disease last year. Additional tests suspect lupus involvement too. (Lupus was ruled out 25 years ago when I first went through MS testing.) I know it's not common to have lupus and MS. It's usually one or the other. But it has made me curious. My neuro told me that it isn't uncommon for those of us with one autoimmune disease to get others. I have Hashimoto's, MS, and now the autoimmune liver disease. I'm hoping three's a charm!

Thank you for responding. Very interesting-even more so is how your MS treatment helped your kidney disease!

My neuro and rheumatologist are considering Imuran. Both feel that may be the best way to suppress my immune system for both diseases. I'm already on Plaquenil (lupus immune system suppression), but an MS relapse last month has them looking to do more now.

[itasara in reply to WAshingtongirl]

What about Copaxone? It isn't an interferon medication.

[WAshingtongirl in reply to itasara]

For some reason my neuro is pushing for Imuran. It is used for autoimmune liver disease, but also used to treat MS patients for years in the UK. So she feels it would help both diseases. She also is talking about the new drug expected to be approved by the end of the year: Ocrelizumab.

[itasara in reply to WAshingtongirl]

Well I wrote a reply and then it all disappeared! I'm glad you mentioned this drug. I've never heard of Imuran but I did look it up. I don't think it's widely used in the United States if at all. It got a bad rap after 40 years of use in the 1980s but now there is new data to show that it may be effective and cheaper. It's not clear to me if it's the same kind of drug then the other three top drugs are in the US. There is one older article ( so not sure how up to date it is) that you might find interesting about UK governmental risk sharing scheme for multiple sclerosis drugs;I am not clear if this is also an interfuron drug but I prefer to stay away from interferons As long as possible.

[WAshingtongirl in reply to itasara]

Thanks. I trust my neuro at the MS Center here. She is excellent. She let my rheumatologist know that she would be okay with him treating the autoimmune liver disease with azathioprine (Imuran), methotrexate, or rituximab. My rheumatologist (and gastroenterologist) prefers Imuran due to fewer side effects. The hope is that the Imuran will help the MS too. (Steroids no longer do.) We'll see. MS relapses didn't concern me as much as they do now with the liver problem. That's why I am willing to consider the Imuran. When my gastro mentioned treating me with it after my liver biopsy, I held him off.

By the way, did your doctors rule out Lupus when they discovered you had autoimmune kidney disease? I just looked it up and see where it can be a stand-alone disease as well. Did you have symptoms and testing for that led to the discovery?

So happy to hear it is gone (or at least under control). You must be relieved.

But how interesting-you have (or had) another autoimmune disease in addition to MS.

[WAshingtongirl in reply to itasara]

Goodness, I think I messed up and confused you and JMR628. So sorry! I just put the two of you together. ...if I only had a brain ... Or one that worked better 🙄

[itasara in reply to WAshingtongirl]

Not a problem! To be sure I only have MS.

[tgrzeslo]

My daughter is on a liver transplant list partially due to her resistance to testing blood sugar. She is now on a severely restricted diet. Take care of yourself & eat a healthy diet.

[WAshingtongirl in reply to tgrzeslo]

Thank you. At the moment, I am 'stable.' The liver seems to flare when the MS does, or the other way around (since I'm SPMS now). I'm so sorry to hear about your daughter. She must be very ill to need a new liver. Is the blood testing due to diabetes? I pray she gets a new liver soon. For me, with autoimmune liver disease, my body would only attack a new liver. Already decided not to do it should It come to that (hopefully it won't). A new liver is better given to someone who can live with it for a long time.

[tgrzeslo]

Your words are very kind and I do believe in prayer. My daughter does have Type 1 diabetes. I'm sorry I got confused and responded to you thinking that you had kidney issues. My daughter is on a kidney transplant list and I had her on my mind. I have less experience with liver conditions even though I had Hepatitis A when I was 7yrs old. I do remember feeling very weak and nauseous. I'm glad to hear that you are stable, I will pray for you that your flare ups are fewer and controlled quicker. Sincere regards.

[WAshingtongirl in reply to tgrzeslo]

Thank you. I appreciate your prayers. And no need to apologize for the confusion. I've done the same here after only a few posts! Type 1 diabetes. That is hard. I'm sure you had many difficult times (and scary ones, too) as she was growing up. My children are healthy, grown men with families of their own now. I can't imagine what it would be like if one of them was as sick as your daughter. My prayers are with you and your daughter.

[tgrzeslo in reply to WAshingtongirl]

Thank you

[dmaskal1]

That's something I have not heard about so I will be following this.

[dmaskal1]

That's something I have not heard about, so I will be flowing this.

[jackiesj]

Anyone tested for Alpha 1 due to the liver and MS...its a genetic thing.liver pancreas heart lungs depending on the mutation....

[sabrinawhitehorse]

I have

MS, autoimmune hepatitis and osteoarthritis, I am starting to feel like I should give up.. so far every time I've been treated for one thing surgeries on my legs for joint replacement it causes something else I don't know what to do about it anymore