Azathioprine didnt work,what next?: Hello... - Myositis UK

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Azathioprine didnt work,what next?

Fleetwood49 profile image
7 Replies

Hello Everyone

I was diaganosed with Polymyositis 18 months ago. Was on 150mg Azathioprine and had tappered to 8mg prednisone daily.

Unfortunately my hips, leg pains and muscle fatigue did not improve much after the initial 2 months.

I have now been told to stop the azathioprine, continue with the prednisone and I am on the list for another mri scan.

If the inflamation still shows in my hips and legs after the scan what further medication would help?

Has anyone else been on azathioprine with no real results?

Any help would be great.

Fleetwood49

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7 Replies
Maggie7171 profile image
Maggie7171

My ck's and liver enzymes are finally normal. I am on 150 mg of AZA and down to 20 mg from 60mg of Prednisone. So I'll thinking it's working. Are you off Prednisone? Your numbers went up alone on the AZA med?

sorry you are going through this.

Fleetwood49 profile image
Fleetwood49 in reply to Maggie7171

Hi Maggie7171

Thank you for your reply.

Yes I was on 8mgs Prednisone as well as the Azathioprine.

Only on the Prednisone now and feel a lot more pains in my hips and legs but awaiting new appointment re changing medication.

Hope your are feeling better.

Maggie7171 profile image
Maggie7171 in reply to Fleetwood49

So sorry that the AZA didn't work. I have no side effects from the med, but since I m still on 20 mg of Prednisone, I don't know what will happen when weaned off.

My CK's are normal, but did go from 72 to 92.

I'm hoping that PT will help with the exercises.

Please let me know when you start a new medication.

Take care

Hi , I couldn’t tolerate Azathioprine at all, I then went onto Cyclosporine. There are a number of oral immune suppressants to try like Mycophenolate and Tacrolimus.

I hope you get one that works for you.

Fleetwood49 profile image
Fleetwood49 in reply to

Hi Helen-M

Thanks for your reply. I hope I find the right medication in the end.

Hope your feeling a lot better.

Bubba1018 profile image
Bubba1018

I was battling many different combinations of meds including azathioprine, prednisone, methotrexate, and others. It was IVIG that finally got my levels normal and put me in remission. That was over 15 years ago.

angelsue profile image
angelsue in reply to Bubba1018

Good to hear that. I hope you continue doing well. Please tell me the full name of that treatment and effects. Best wishes

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