Weaning off long term use of prednisone.

It must be difficult having been on prednisone for such a long time @gaylerenee. You might want to have a conversation with your rheumatologist about the risks of suddenly stopping the prednisone without slowly tapering off before you stop taking the prednisone. Here's some information from Mayo Clinic:

" Take care when discontinuing therapy. If you take oral corticosteroids for a long time, your adrenal glands may produce less of their natural steroid hormones. To give your adrenal glands time to recover this function, your provider may reduce your dose gradually. If the dosage is reduced too quickly, your adrenal glands may not have time to recover and you may experience fatigue, body aches and lightheadedness."
--- Prednisone and other corticosteroids: https://www.mayoclinic.org/steroids/art-20045692

There is another discussion that you might find helpful:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/

Did your rheumatologist have any suggestions for the pain in your hands?

Yes, he told me everything that you have told me here. He said it appears I won’t be able to get below 3 mg and the only thing he can do is refer me to a hand surgeon. He said I may have to have my wrists fused.

You might want to discuss this tapering plan with your rheumatologist to see if it can help get you off of prednisone.

--- Dead slow and nearly stop reduction plan (Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

Get a second opinion!

Not a bad idea. Thank you.

My doses of prednisone were 10 mg or more for 12 years. I talked to my GP about a referral to an endocrinologist. My GP wasn't opposed to the idea but he didn't think an endocrinologist would suggest anything else besides a slow taper.

My GP was right. The endocrinologist referred me back to my rheumatologist to see if anything else could be done to get my prednisone dose lower. The endocrinologist offered some hope and said I should come back to see her if I could get down to 3 mg of prednisone.

A year later, my rheumatologist suggested I try a biologic because I was still taking 10 mg of prednisone. If I was only taking 3 mg of prednisone, he wouldn't care so much. However, the prednisone dose I was taking was too much.

The biologic worked well and I got down to 3 mg of prednisone. I was told to stop tapering until I saw the endocrinologist again. The endocrinologist diagnosed adrenal insufficiency and told me to stay on 3 mg of prednisone to supplement my low cortisol level. The endocrinologist hoped that my cortisol level would increase with time. After 6 months, my cortisol level was in the low normal range and I was able to get off prednisone while I continued the biologic.

My cortisol level increased but that won't be true for everyone. Some people need to stay on prednisone for the rest of their lives after long term prednisone use because of adrenal insufficiency.

At the very least, maybe you could ask to see an endocrinologist to have your adrenal function evaluated. Your rheumatologist could check your cortisol level too. Maybe you have taken prednisone too long but don't give up hope just yet.

What was the biologic you were taking and what were your doses? Also did you take it with prednisone? If you don’t mind sharing , what age or age group are you. I am 83 and that may be why i can’t seem to get below 3 mg.

@gaylerenee

Age might be a factor. I omit part of what my rheumatologist told me when he considered starting me on Actemra---the biologic I now take.

Before I tell you what he said, let me say the following:

You are doing a fantastic job getting down to 3 mg of prednisone. I took prednisone for PMR for roughly the same amount of time as you --- I didn't get anywhere near 3 mg. You are doing much better than I ever did with tapering off!

As we age, the body needs more cortisol. Prednisone may be giving you the extra cortisol you need.

My rheumatologist did in fact tell me he wouldn't care so much if I was only taking 3 mg of prednisone. I was taking 10 mg which wasn't acceptable to him. I didn't think I would ever be able to taper off prednisone so I wasn't even going to try anymore.

Part of what my rheumatologist said to me is about age. I think you are right about that.

I usually omit this part. I was 64 when my rheumatologist said, "I was too young to take 10 mg of prednisone for the rest of my life" but it would be okay if I was only taking 3 mg.

I hope this helps you.

Yes, thanks, that was helpful. Whenever I’ve seen your username, I know that I will be reading something useful.