Cellcept or Azathioprine

[Wonderfullife68]

Hi, newbie here. 😊

A blood test back in 2009 confirmed I had PBC, but it took until 2015 and a liver biopsy for a definite diagnosis which also found I had auto immune hepatitis. I was put on Budesonide and Urso, but didn't get on with Urso so stopped taking, a few months later Budesonide was stopped.

I was left alone until 2017 and another consultant I was seeing for something else noticed my lft's were not good and asked a colleague of his to see me.

I was put back on Budesonide then Cellcept.

I began feeling so ill, nauseous, no energy, pretty rubbish, so I decided Cellcept wasn't worth it and stopped. Gastro were not happy, took some bloods and said they would try me on Azathioprine when I next see him (this afternoon)

I've heard that Azathioprine can give you joint pain. I have fibromyalgia, that was the reason I was put on Cellcept as not as bad on joints.

Has anyone had joint pain with this medication? I'm in enough pain without a medication adding to it. I understand it's important for my long term health to be on medication, but when it makes you feel worse it does make you question everything.

Sorry for long post, feeling a little down, and not sure what decision to make.

Thanks in advance for any replies.

[tray1970]

Hi

I also have AIH diagnosed in April, I take AZA and Pred. I do have joint pains but had them anyway even when not on AZA.

Hope this helps

Tracy

[jane1964]

Hello I have pbc for which I take urso which works reasonably but my liver function tests remained elevated alkaline phosphatase for last 4 years.A couple of years ago I developed a vasculitis, which caused pain in muscles tendons joints etc, it took some time for a rheumatologist to diagnose what's was wrong but last year they decided it was a type of vasculitis, called MPO vasculitis and started me on hydroxychloroquine and later azathioprine I have had regular blood tests for monitoring since I have been on the azathioprine my symptoms are enormously improved not cured of course but my quality of life is much better the pain and tendon problems much better I still get pain but more manageable and severe attacks less frequent.Also my liver function tests are now all normal even though I wasn't given the azathioprine for my pbc! So I have done very well with azathioprine I haven't had many problems and no infections.IF you and your consultant decide to try it I hope you do as well.I was pretty scared to try azathioprine but it's been better than I could have hoped.Jane.

[Hidden]

Hi

How are you feeling today? My son , who had Crohn's disease has been on aza for a while and he has been great, he does have to have infliximag infusions S well but like I said aza really helped him . Please take care Lynne

[Hidden]

Hi ,

I have pbc/aih overlap, on urso,azathioprine and prednisone . I get joint pain but also have osteoarthritis. Stick in with the meds and hope you feel better soon.

Take care x

[Wonderfullife68]

Thanks for all the kind replies. Appointment didn't go too well, my ALT level had increased to 173, the highest it's ever been. As I discussed my concerns he said he was going to speak with his colleague as he didn't know what else to do with me as I'm not too happy feeling more ill with medication then I already do but I probably will not get an appointment for a further 6 months as his colleague is very busy😒. Had bloods taken and he's calling me either today or tomorrow. I'm going to stay on Budesonide until I'm told otherwise. I understand they are trying to help us with a disease that will progress if left alone, but they also have to understand that not every patient can tolerate medication and be a bit more understanding then basically writing you off. They left me alone all those years? In fact, the main reason was the neurosurgeon I was under (had brain surgery, that was the beginning of it all) when the bloods first ever came back showing PBC, he ignored them saying they were a false positive, hence all the gaps in treatment.

He has just called, his colleague is seeing me end of August, letter coming out to me, so that's really good.😁

[Hidden in reply to Wonderfullife68]

I understand what you are saying,i still feel ill with my meds and suffer terrible nausea and fatique. My husband remarks whither worth while .

[Wonderfullife68 in reply to Hidden]

Hi angel74, that's how I feel. x

[alfredthegreat]

Hi, I am 11 months post transplant. I have joint pain in both hips and one knee that seemed to start overnight. I had Xrays and was diagnosed with Osteoarthritis. I'm on Azathioprine and also Alendronic Acid. Both of these tablets have listed amongst the side effects bone and joint pain. With the pain from the arthritic joints starting so suddenly in all 3 joints I wonder if any of it could be tablet related. I am going to have my Aza reduced by 50% in 3 weeks time and then hopefully stopped altogether in late December. It will be interesting to see if there is any pain reduction. I will let you know if the reduction in Aza makes any difference to the pain. Aza is best taken after food. Some forum members have suffered some gastric problems from taking it. I always take it after breakfast and have had no gastric problems but I do also take Ranitidine and that helps to protect the stomach from medications taken. Hope that you get sorted on tablets that agree with your joints and your inner system soon. Very best wishes. Alf

[Wonderfullife68 in reply to alfredthegreat]

Thanks alfredthegreat, best wishes to you, and do please keep me updated. Many thanks. x