How did you cope with the side effects tapering off prednisone?

Oh my…you have given me real hope! I expected this taper to take a very long time. I also have a team of doctors that are trying to help me taper in a way that doesn’t flare my other conditions. I am tapering 1 mg per month starting at 25mg. I have been taking 25mg for 3 years.
I really appreciate you sharing your story. It’s helped me a great deal!

How is your team of doctors helping you? I suspect you have more than PMR going on since you have been taking 25 mg for 3 years. That was my problem because it wasn't PMR only but treated like it was. It was a full range of rheumatological problems which weren't fully revealed until I got off prednisone.

An ophthalmologist was involved because of uveitis. A neurologist was involved for trigeminal neuralgia.

An endocrinologist got involved for secondary adrenal insufficiency but that problem was caused by prednisone. Prednisone contributed its share of problems but certainly helped to control the pain.

It wasn’t until I went to NJH that my local doctors got in formation and started to address my prednisone dosage. I suspect as you have, there are a host of issues that will surface as I continue to taper. My naturopath identified Adrenal insufficiency as an issue. I do believe an Endocrinologist is needed to assist. (Neurologist, Rheumatologist, ENT, Asthma/Allergy Immunologist, PCP, Naturopath, Orthopedic, Cardiologist etc.).
It’s exhausting and time consuming navigating all the doctors, advocating for myself, coordinating my care, and communicating with all the docs through various electronic medical charts etc.
Thanks again!

My doctor wants to try Actemera. How long did it take you to get off that drug after you stopped the Prednisone and did you have any side effects?

My very first injection of Actemra was January 1st, 2019. I started with injections every 2 weeks. I got off prednisone for the first time in 12+ years. It took me 9 months to taper off prednisone with PMR under control. I didn't have any side effects from Actemra. I was feeling reasonably well as far as symptoms of PMR were concerned.

Something unexpected happened within 1-2 weeks after I stopped taking prednisone. I had a very serious flare of autoimmune uveitis.

It was my first flare of uveitis in a long time but it wasn't my first flare of uveitis ever. Uveitis stopped happening when I was on daily doses of prednisone. I don't think uveitis ever happened after I was diagnosed with PMR.

My ophthalmologist put me back on 60 mg of prednisone. After conferring with my rheumatologist, Actemra was stopped. Actemra didn't cause the uveitis. Uveitis is just another autoimmune disorder.

My ophthalmologist didn't think Actemra was "optimal" treatment for uveitis. A different biologic called Humira was started and Actemra was stopped.

Humira and 60 mg of prednisone worked well for uveitis except as I tapered prednisone back down to 15 mg, my PMR symptoms returned. It became clear that I wasn't going to be able to taper off prednisone again because of PMR.

I wanted to be off prednisone. My rheumatologist gave me a choice:
Humira for uveitis or ... Actemra for PMR.

I choose Actemra for PMR

When Actemra was restarted my rheumatologist recommended weekly injections instead of every 2 weeks. Weekly injections allowed me to taper off prednisone even faster the second time.

My ophthalmologist wasn't too happy about me choosing Actemra. She thought it was just a matter of time until I had another flare of uveitis. I thought that would happen too but uveitis didn't flare up again when I was doing weekly injections of Actemra instead of every 2 weeks. Now my ophthalmologist says Actemra appears to be working for uveitis.

None of my doctors want me off Actemra because it works well for me. I have been on Actemra since it was restarted.

I currently do monthly infusions of Actemra because the infusions seem to work even better than the injections for me. I don't have any side effects.

I would recommend Actemra but it comes with no guarantees.

Hi,

Not sure this helps but I found that alternating dosage help when tapering prednisone for about a week before consistently taking lower dose. Everyone reaction to meds is different so not sure this helps but did help as I went into single digit doses. Best.

I believe that I am almost totally over PMR and am reducing Pregansone. After trying to unsuccessfully reduce for over a year, I am at 1 1/2 MG right now but it's been a hard road. I did it by doing something I can't believe would actually make a difference, I reduced my daily dose by 1/4 MG a time. Leaving the next reduction until I had felt good for at least a month. I still can't believe that only 1/4 MG reduction would make a difference, however, after a total of 4 years it worked. Now I still have stiff muscles to deal with but I think that is only a side effect of not being active for the past few years.

I have had good results from prednisone in managing the joint pain & stiffness but muscle soreness continues, especially around the neck & shoulders even though blood tests confirm reduced inflammation. Now down to only 4.5 mg daily (after 25 mg daily at the start of treatment) and tapering slowly - now a year since first diagnosed. Glad to hear you’ve got to 1.5 and that .25 reduction was effective. That gives me hope that I can continue to reduce the dose without return of major symptoms.

It took me a long time to clear the pain in shoulders and neck. Thanks to a great man in my life with big strong hands, simple neck rubes help a lot. Neck stretching exercises also helped. I think a lot of my pain is coming from the fact that while getting over PMR I just plain got old. Next month I'm 79 so I'm treating the pain I still have as a symptom of getting older. Keep smiling sunshine, it does get better.

Thanks for the discussion of prednisone. I only took it for 4 days and it had to be stopped. Serious headache, loud tinnitus like a jackhammer, disorienting. I did not realize the pain in shoulders and neck was related.
I also got old in a week. One day fine. Next week mirror told me my immune system had decided to make me really look like the 81 years I am. Phooey. I'm Judy and joining many groups here.