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Posted 10/13/2015 12:27 PM (GMT 0)
Hi can anyone say why the severe joint pains? Back pain and knee and leg pain? I have highly swollen legs from Azothioprene and walking is difficult. My legs ached so much it is crippling.
I am taking Budsonide and Azothioprenre and anti water retention tablets

My enzyme are gradually going down and I was diagnosed about a year ago.

Can anyone help please?

Post Edited By Moderator (themiz) : 10/13/2015 2:57:21 PM (GMT-6)

Posted 10/15/2015 3:26 AM (GMT 0)
confused  I feel your pain, literally.  I was diagnosed with AIH in May 2015 and I also have had join pain, back pain, swollen everything and feel like I can't move at times.  I'm exhausted all the time too.  I'm on Imuran 75mg and Prednisone 10mg.  I was told all my symptoms were "normal" side effects and hopefully would gradually decrease with time.  I hope for all of us that are having them that it's true.  My doc put me on Cymbalta because it's supposed to help with pain management along with depression.  I've only been on it a couple of weeks so I'm hoping it will help.  Best of luck to you.  I've been fortunate that all my labs have returned to normal already.
Posted 10/16/2015 9:16 PM (GMT 0)
Sorry for the late reply.
Have you spoken with your doctor regarding the pain? My understanding is that aside from AIH in general possibly causing pain, it's a quick weaning from steroids that could do it as well. However, I am not familiar with the budesonide causing pain during a wean. I have been very lucky and do not have much pain. It happens here or there and for the last few months one joint in a toe is causing some really good foot pain but I haven't broken down to see the doctor yet.

What dose of budesonide and Aza did you start on and what are you on now? How high were your enzymes when first diagnosed and what are they now?

Welcome to the forum!
Posted 10/29/2015 8:24 PM (GMT 0)
Dear Dany,

I am writing on behalf of my sister. I am really worried about her and I am so confused. I hope you can help. She is not being weaned off drugs because her enzymes have not settled yet
Is it possible for someone's blood not to normalise at all? Her Dr seems to keep adjusting her CellCept and Azothiorprine and Budsonide? She has had AIH for one year and it is not settling
I really need help. recently she has developed this severe pain in her legs I am so desparate for her. I can not watch her being so ill. please can someone help me
Posted 10/29/2015 9:43 PM (GMT 0)
Hi...You must be farbia's sister? I am so saddened she is not doing well. Let her know she is in my thoughts tonight.

I did send a quick note to Dany to let her know you are here and request some support. We do have a few AIH members that should pop in soon. Sending you both Big Hugs
Posted 10/30/2015 6:24 AM (GMT 0)
Dear themiz, yes I am Fariba's sister and I am lost at the level of pain and desperation she is going through. Any help advice or any thoughts will help her deal in these difficult and agonising time
thank you ever so much
Posted 10/31/2015 1:48 PM (GMT 0)
It can take some people quite a time to find the combination of medications that work for them to bring the enzymes down. A good hep experienced in AIH will be able to try different combinations and it sounds like that is being done. Has there been any discussion of trying prednisone rather than budesonide? Although the side effects are far fewer with budesonide I have seen a few people who find that it doesn't work for them (and others who find prednisone doesn't work but budesonide does!).

I know it can be tough but hang on in there.

As regards the pain - has anyone tested for rheumatic autoimmune diseases to rule them out? It is quite common to have more than one autoimmune disease so it is worth checking there isn't an additional condition that needs treatment.

Ann
Posted 10/31/2015 6:45 PM (GMT 0)
I have to agree with the others. Definitely see about having your sister see a rheumatologist. If there is another AI disease at work, it could be confounding the issues Fariba is having. Is she taking any multivitamins? Maybe it's something as simple as low potassium?
What dose of each med is she taking? Just wondering. I piggy-backed CellCept and Azathioprine but only whilst waiting for the aza to kick in fully then I dropped the CellCept. That was way back at the beginning of treatment.
Posted 10/31/2015 9:40 PM (GMT 0)
Many thanks to our AIH folks for popping in....I always tell folks SOMEONE here has walked in their shoes.

ML
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