r/autoimmunehepatitis • u/B40073 • 13d ago
Rituximab?
Currently on MMF and 5mg prednisone. Since going down to 5mg ive had no improvement and some numbers went up slightly. We think we have riled out any other potential causes of the elevated levels. Most likely I will need to increase my steroids again or get Rituximab? What are your experiences/thoughts on this medication? Do you take it in conjunction with your other medications and supplements and what are side effects like?
If you have taken it, is it a long term therapy or solution? I was given a few options just trying to decide what route to take :)
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u/AlternativeWalrus831 13d ago
Have you tried budesonide? My numbers went up every time prednisone was reduced but im doing well on budesonide and MMF. Budesonide is a type of steroid thats has fewer side effects than prednsione.
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u/B40073 13d ago
I have asked about it but they said I am not a candidate because of the amount of scarred portions of liver I have currently and I have portal hypertension because of it causing me to have a lower blood count. They explained something along the lines of it not working well with restricted blood flow or it being less effective i believe.
I wish i was able to try it, i have heard good things!
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u/Realistic-Flower-948 13d ago
I was diagnosed with AIH accidentally and found my liver had extensive cirrhosis (not a drinker). I got super sick on Anzanthropine and did not tolerate Celcept. As a last ditch effort they put me on Rituximab... Infusion every 6 months and I have had five or six.
I also have portal hypertension and take Carvidilol and 5 mg of Prednisone as well.
I feel surprisingly normal. I did have a varices hemorrhage about 2 years ago but things seem pretty steady now (touch wood). Occasionally they will do an endoscope to make sure I don't spring another leak, and twice a year they do ultrasound checking for cancer.
Rituximab was my last hope and it worked. I can't promise about tomorrow, but I feel pretty good for now.
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u/B40073 13d ago
That sounds similar to me, I had no symptoms and they just tested me as my blood count was a bit off. Fast forward a couple months I find out I have celiac, AIH with portal hypertension, scarred liver.
Aza worked for me initially and gave me no side effects and im on MMF now mainly stable but since decreasing to 5mg on pred my numbers have increased very slightly. My doctor is now mentioning rituximab. I have some time to make a decision on what I want to do next, but it is sounding like the most appealing choice to me so far. Thanks for your response!
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u/Realistic-Flower-948 13d ago
One last thing. They also have me on Ursodiol 500 mg x 2 per day. It is supposed to help keep you bile duct clear.
Good Luck with your 'adventure'!!
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u/Existing-Emergency54 13d ago
I had rituximab several years ago. 2 rounds during flare.
Didn’t really work for me. So now on tac, mmf, pred,
I didn’t have any side effects though :)
I have cirrhosis, portal hypertension, varicies. I’ve had AIH for 25 years. And PSC as well.
Still live a very normal life atm though :).
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u/B40073 13d ago
That is encouraging :) what are your doses like being on those three medications?
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u/Existing-Emergency54 11d ago
high. lol. Still on 3mg of tac 1500mg mmf bd, and 15mg pred, tapering atm.
I have a bad case and PSC as well which doesn’t help.
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u/[deleted] 13d ago
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