Any Tips For Tapering Off Prednisone?

I have been tapering at a rate of half a mg a month since i was at 7 mg. Im now at 5 mg. I still have some shoulder , neck and hip pain but feel that everyday i feel a little better. A mg every two weeks seems aggressive to me. The slower i go the better my body responds to the taper. I also started taking 3 mg in the morning and 2 before bed to try to lesson the morning stiffness. If it’s a bad day i will take one Aleve. Everyone responds differently but i got this advice on the support group snd it has worked well for me.

Thanks for yout input! It does say on my taper schedule that if pain returned at any point to go to 4 weeks at a time on a dose instead of 2 weeks. Pain has definitely returned so I think I'll bump back up to 8 for another 2 weeks then try for 7 again or even 7-1/2. I was splitting the dose almost from the beginning but my doctor wanted me to take it all in the morning so I recently switched my routine. Honestly, I felt better dividing it and will go back to that. lol

That 7 mg dose of Prednisone is a tough dose to get past. I had many problems at that dose of prednisone just as many people seem to have. I think two things are happening at that prednisone dose. It is the beginning of what is considered the physiological dose of prednisone. The physiological dose of prednisone corresponds to the amount of cortisol the body needs to function.

The prednisone we take essentially replaces the cortisol that our adrenals produce. When we take Prednisone in excess of 7 mg daily, the body gets used to having more cortisol than it needs . The adrenals stop producing cortisol. The longer we take prednisone in excess of 7 mg, the longer it takes the adrenals to respond when there is a need for more cortisol. It can take weeks or months for the adrenals to resume the task of cortisol production after we take prednisone for a long time.

Prednisone is called an exogenous source of cortisol. Exogenous sources of cortisol are man-made (synthetic) glucocorticoid medicines like prednisone that we take for PMR..

The cortisol that the adrenals produce is called an endogenous source of cortisol.

Our body doesn't really care where the cortisol comes from as long as it equals the physiological amount of cortisol that the body needs.

At 7 mg the body begins to sense that there isn't enough cortisol. Our bodies are very clever about getting what our bodies need. When it doesn't have enough cortisol our bodies start to complain in the form of prednisone withdrawal symptoms. Our bodies tell us, "more cortisol please" in not very polite ways. It is more like our bodies demand more prednisone since our adrenals aren't producing any. We usually succumb to the prednisone withdrawal symptoms and take more prednisone. That is the first problem that usually happens.

If we don't succumb to prednisone withdrawal symptoms there still is a shortfall of cortisol. One of the functions of cortisol is to regulate inflammation. Assuming the inflammation caused by PMR is still being produced then it builds up and we experience a flare.

Whether our symptoms are from prednisone withdrawal or a flare of PMR is hard to distinguish and it is likely a combination of both happening at the same time. In any case our symptoms are eased when we take more prednisone.

Except taking prednisone in excess of 7 mg won't encourage the adrenals to produce cortisol. Many of us get stuck on 7 mg of prednisone.

Thanks! That makes perfect sense. I'm just SO OVER all of the prednsione side effects. I'll try to tough it out a few more days on 7 mg and see what happens.

You could also try a really slow taper plan to see if works.

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

The longer you stay on prednisone, the longer it takes to get off. It mostly depends on how quickly the adrenals recover.

I never got past the 7 mg barrier without the biologic I presently take. The biologic controlled my PMR inflammation without suppressing my adrenal function. After the biologic was started, I blew right past the 7 mg barrier down to 3 mg.

My endocrinologist said I needed to be on 3 mg of an "extended period of time" and hope my adrenals would start to produce some cortisol. I had withdrawal symptoms but they weren't as bad as my PMR symptoms were originally. I kept telling myself I wouldn't have a PMR flare because the biologic had that part under control.

My endocrinologist wasn't too optimistic about the chances that my adrenals would recover since I was on Prednisone for 12 years. She said the adrenals usually recover but 12 years was a very long time to be on Prednisone. It took about a year for me to have an "adequate" cortisol level. When I had an adequate cortisol level, my endocrinologist said from 3 mg to zero no tapering was needed. I did a 3 mg - 2 mg - 1 mg -zero countdown taper in a week and I was suddenly off Prednisone.

I had to stay on 3 mg for a year! That would have been impossible for me to do without the biologic. I have now been off prednisone for more than 3 years but I still do a monthly infusion of the biologic. My side effects from the biologic are minimal if any. I had terrible side effects from Prednisone. I would rather not need the biologic but it works better than Prednisone for me without all the Prednisone side effects.

I sometimes feel like I cheated with taking a biologic. I was prepared to take Prednisone for the rest of my life except my rheumatologist didn't like that idea.

I currently don't have a rheumatologist as mine moved back to Florida in May. The only other practice anywhere close to me can't see me until October. I'm having some vision problems that I'm hoping are just age related and a simple matter of bifocals. Not, hopefully, GCA. Before he left, my rheumie talked about starting me on Kevzara. I have my 3 month checkup with my PCP next week and an appointment with an ophthamologist. Planning to ask my PCP about a scrip for Kevzara. My side effects with the Pred are honestly awful which it sounds like you can relate to. Thanks so much for your valuable input!

I currently do a monthly infusion of Actemra but I used to do Actemra injections. My rheumatologist has total control of my infusion dose of Actemra which is fine with me.

Kevzara and Actemra are different medications but the way they work is basically the same. I'm not sure a PCP can prescribe Kevzara. I once asked my PCP a question about Actemra. He said biologics are "out of his league" so I would need to ask my question to my rheumatologist to get the right answer.

Actemra is FDA approved for GCA. I suspect an ophthalmologist could prescribe Actemra for GCA or the possibility of GCA. I'm not sure how that would work.

I have a different autoimmune problem with my eyes. My ophthalmologist says Actemra isn't optimal for my eye condition. My ophthalmolgist wants me on a different biologic. The agreement my rheumatologist, ophthalmologist and I have is that I will remain on Actemra for as long as it works.

I hope something works out for you. It is a struggle to taper off Prednisone without some assistance.

I had to slow my taper by alternating 3mg/2.5 mg every other day for a week and then go down for a week to 2.5mg. that regimen worked till I got down to 2.5 and pain increased. Splitting the dose helped me sleep better. I took a smaller dose at night than in the am (example 1mg night and 2mg in am)
Not sure about you all but I’ve also been on plaquanil/hydroxychloroquine at the same time as the prednisone. Recent labs showed a spike in platelet count and rheumatologist said that means it’s not working and he switched me to Imuran to see if that allowed the taper to works enough to get off the prednisone. We’ll see and I’ll let you all know.

It is amazing how “steroid sparing” medications are used to get people off prednisone. At some point doctors regard long term prednisone use to be the problem instead of PMR.

When people have side effects from the steroid sparing medication it gets stopped right away.

Prednisone side effects either are ignored or treated with another medication. It isn’t so easy to stop the prednisone.