Have you been able to taper prednisone with long lasting success?

@southtexas Do you think it may be time to revisit a rheumatologist for a fresh evaluation and some bloodwork? Stay as well as you can....💞

I am in the states, but somewhat familiar with the various medical studies because I had a raging case of GCA three years ago and am still tapering.

In England, Dr. Bashkar Dasgupta, who was one of the doctors that worked on the clinical trials for Actemra, believes in leaving his patients on a low maintenance dosage~food for thought.💞

I started with 10 mgs 3 years ago and had several flares in that time. I just got down to 1-1/2 mgs a few days ago and felt awful for about two of those days. I decided to see if I could stick it out without going back up to 2 mgs. Yesterday and today I feel great. I really want to get off this stuff. I'll wait a couple of weeks before going down to 1 mg.

I had very little success tapering off prednisone during my 12 years years of being treated for PMR with prednisone. You are not alone because it is very difficult to taper off prednisone after long term use. The difficulty becomes more apparent when your prednisone dose reaches single digits.

There are several factors to contend with. The first factor being that PMR might still be active. Less than 10 mg of prednisone may not be enough to control the symptoms of PMR because it is a chronic condition which doesn't go into remission very easily. How soon PMR goes into remission is anyone's guess ... some rheumatologists say a year or two but my rheumatologist didn't have any timeline for me to be off prednisone.

Never assume that it is only PMR you are dealing with. I had some other autoimmune problems in addition to PMR. That combined with some other medical problems explains my long term use of prednisone. I was never able to maintain a prednisone dose of under 10 mg. Methotrexate and Leflunomide were used as steroid sparing medications. They were somewhat helpful when used in combination with prednisone.

I was able to taper off prednisone and have been off for about 3 years when a biologic called Actemra was tried. My PMR symptoms were controlled with the biologic but other symptoms emerged when I got to approximately 5 mg and worsened when I continued down to 3 mg. An endocrine consult was obtained and I was found to have adrenal insufficiency. It took more time and perseverance to overcome adrenal insufficiency.

It becomes a personal decision about how to deal with the symptoms of adrenal insufficiency that is caused by long term prednisone use. Some people need to stay on a maintenance dose of prednisone for a long time and sometimes for the rest of their life.

I elected to follow the advise of an endocrinologist even though the general advice was to increase my prednisone dose. My endocrinologist encouraged me to remain on a lower dose of prednisone to give my adrenals a chance to recover. It took about a year for my symptoms of adrenal insufficiency to improve.

When my cortisol level improved, the endocrinologist said it "might be safe" to stop prednisone. When I stopped prednisone another autoimmune condition flared up. I needed to go back on 60 mg of prednisone again for a couple of months but I tapered off quickly again after that.

The cortisol my adrenals are producing is now adequate and regulates inflammation and other things better. That was made possible with a biologic that doesn't suppress my adrenal function.

Your experiences are very helpful.
Thank you

@ncgal
I have GCA and it has taken me three years to get to 3mg. I'm going on a trip but will resume tapering when I get back at the rate of .5mg every four weeks. I do take Actemra injections so I'm hopeful I will get off pred.
BUT, I would be more than happy to take a low-maintenance dose if necessary and have a better quality of life.

Dr. Bashar Dasgupta, from the UK, keeps many of his patients on a low-maintenance dose. It may not be a bad thing !....do you see a rheumatologist?💞

Yes, I do see a rheumatologist. It originally took 3 different doctors and 3 months to diagnose PMR, but a neurologist found it by doing the correct blood work. He sent me directly to a rheumatologist in the same building. What a relief! Luckily, I don't have GCA so I wish you good luck with that. Stay strong.

@leon1649 - FWIW, symptoms began spring of 2022, diagnosed in the fall of that year and starting dose of Pred. was 13 mg. (One wonders how the doctors arrive at that starting dosage).
I have been reducing it 1 mg a month and so far so good...I think. I am down to 3mg, but with all I have read on this and on the HealthUnlocked site, I am going to cut the taper to .5 mg a month beginning the 15th of June.
I say "I think" because I am experiencing some problems with my tendons and my physical therapist told me there is some association of Pred. with tendon problems. Right now, both Achilles tendons are bothering me as are the tendons in the back of both legs, between the knee and ankle.

@ncgal
I'm so thankful you are now in good hands! I just kept rolling with a poor diagnosis for nine months...wouldn't make that mistake again. I would be more aggressive in seeking answers....as you did and it has paid off.
I'm a better-educated patient thanks to health forums that have taught me about my disease. I've become a good advocate for myself with this knowledge.
I'm strong and the forums keep me stronger. We never stop learning and I hope to prevent others from suffering permanent unnecessary damage as I did. People need to realize, hopefully, that the winner is not the person who gets off their steroids the fastest.
My very best to you!💞

Good going... @mansplainer101 ...love that handle! Would it help if you thought in terms of walking 40 minutes per week....not day....to exercise?💞