side effects

[kookymonkey]

Last December I was diagnosed with PBC and Autoimmune Hepatitis. Since then I've been on Ursodiol 900mg daily and Azathioprine 100mg daily. Recently I've begun experiencing nighttime aches in joints and muscles and inflammation in joints in the morning. We've ruled out Rheumatoid Arthritis and I don't believe this is osteo either. The pain is faint in the day but ramps up when the joints and muscles are at rest especially at night during sleep. I also have pain (feels like a bruise) in my upper arms and pain in pelvic joints that doesn't seem to go away. In looking at side effects, both medicines seem to note joint/muscle aches and pains. My physician has reduced the azathioprine to 75mg (no change after 2 weeks now) I'm wondering if the culprit is the Ursodiol and perhaps that should be reduced as well. Has anyone had experience similar to this?

[donna01]

Hi Kookymonkey. Sorry to hear you've joined the rest of us with PBC. I think we all have different side effects but I cannot speak about your current ones as I stopped Urso after 6 months due to nausea, dizziness, stomach pain and hair loss. Now I will tell you this; whenever I eat lousy (Meaning gluten (breads, pasta, etc), I would wake up so sore like a little old lady! I could hardly walk in the morning. I got off gluten and have huge improvement. I believe it is inflammation. But that is my belief. Dr.'s have told me I am not gluten intolerant however why do I feel better off of it AND lost weight (inflammation)? Everything I read on gluten and autoimmune's is not good. Many believe it triggers an attack in the body, thus causing inflammation. I can only share with you my experiences and beliefs, but ask your doctor as well. Some Dr.'s are well informed of how bad gluten is for us.

Best of luck to you.

Regards~

[kookymonkey in reply to donna01]

thanks so much for your comments Donna. I have read much about the autoimmune diet and am struggling to get off gluten but think it may be inevitable.

[Hidden]

I have pain as well. In my shoulder. At first I thought it was stiffness from my rotator cuff tear. I just decided to ignore it. It’s really not bad enough for me to complain yet.

[4pjx__]

I have an achey lower back. I didn't have it before I started the Urso. The pain is usually mild to moderate. I think it's the Urso. It's not bad enough to make a big deal,of. I feel better in other ways so I just try to over look it.

[teddybear7]

Have your bit d checked if you haven't done already. X

[GrittyReads]

I agree with teddybear7. Before you make any drastic drug changes, get them to check your vitamin and mineral levels. Joint and muscle pain is now officially classed as one of the main symptoms of PBC, so the pain may just come with the territory, rather than Urso etc..

A shortage of vitamin D can be common with PBC, and this can cause joint pains, as well as causing a drop in calcium - with could lead to osteoporosis. Also PBC folk are also prone to B12 shortage. So do ask them to check your mins and vits, as well as checking for other actual muscle and joint issues. There are also specific conditions which cause 'waking pain', so again you should be checked for these until all is ruled out: eg a friend was tested for everything and was eventually found to have polymyalgia rheumatic.

Hope this helps.

[kookymonkey]

thank you so much for your help.