PMR Taper and pain

I was started on 60 mg last August because they thought I had GCA in addition to PMR. I'm now down to 5 mg. When I was at 10 mgs and being tapered down to 7.5 mg, I had a lot of my old PMR symptoms coming back. So when my PA recommended I taper back again to 5 mgs I was really upset and extremely hesitant to do so. She believed that my symptoms were due to the Prednisone not the PMR, and it turned out she was right. I'm down to 5 mgs and have an appointment again next week so I'm sure they are going to want me to cut back on the Prednisone again. So I will let you know if I have any problems like you are describing during the final tapering process.

In the meantime, have you talked to your doctor about your symptoms at 2 mgs, and questioned why your are having these symptoms? If not, ask if your symptoms could be from the Prednisone itself, the tapering off the Prednisone, or at this point could you be having your PMR symptoms coming back?

Whether it is prednisone withdrawal symptoms or PMR coming back really is hard to determine when we taper below approximately 7 mg.

I had a very difficult time at that dose too. Prednisone withdrawal symptoms are caused by adrenal insufficiency. People who attempt to decrease their prednisone dose after a long time may experience symptoms such as:
muscle pain
joint pain
fatigue
nausea
vomiting
low blood pressure

As it turns out, the adrenal glands make most of the body’s cortisol however, the body cannot immediately produce enough cortisol again to make up for the lower doses of prednisone. This results in withdrawal symptoms. or adrenal insufficiency.

The body uses cortisol for many functions:
mediating the stress response
regulating metabolism
managing inflammation
mediating the immune response
managing the levels of blood sugar reaching the brain
reducing insulin and increasing glucagon levels in the pancreas

Prednisone manages inflammation until we attempt to wean ourselves off. Taking prednisone for a long time shuts down the body's natural ability to regulate inflammation. This includes the inflammation caused by PMR. I believe the difficulty in tapering our prednisone dose below 7 mg is a combination of adrenal insufficiency and PMR.

It is necessary to wait until our adrenals begin to produce adequate amounts of cortisol again. This process can take months to happen. In most cases , it eventually happens but it doesn't always happen.

Thank you for all the info. I read a lot about PMR and you are well versed on this subject. So any info I receive is a blessing.

Just had a question for you. Since you have felt the symptoms coming back around 7 mgs more or less, have you been weaned on a monthly basis off the Prednisone? or Have you been weaned back over a 2 month period? I ask this question because when I was weaned from 10 mg to 7.5 mgs off the Prednisone I felt my symptoms returning (the same way I felt originally with my PMR). Then I missed one of my appointments for my monthly weaning and went back to the doctor after 7 weeks, my symptoms started to subside and I felt better (so I feel it may have been the Prednisone). Just something to think about. Not sure if this would apply to how your feeling, but thought it wouldn't hurt to let you know of my reaction with Prednisone. Thanks again for all your info!

I was on prednisone for more than 12 years. I have been completely off prednisone for only the past 2 years. Four years ago, my rheumatologist wanted me to try a biologic medication called Actemra (tocilizumab) to treat "refractory PMR." I wasn't having any success with tapering my prednisone dose lower than 10 mg. My lowest dose was 7 mg but I couldn't tolerate that low of a dose for very long.

Actemra wasn't FDA approved for the treatment of PMR and still isn't. However, Actemra was FDA approved for the treatment of GCA. My rheumatologist wanted me to try Actemra because he believed it should work for PMR too. My rheumatologist made the case that Actemra might be my best chance of ever getting off prednisone. He got it approved for me with the recommendation to treat me as if I was diagnosed with GCA.

Actemra doesn't suppress my adrenal function like prednisone did. After Actemra was started, I tapered prednisone by 1 mg per month for the first 3 months. I felt reasonably well when I reached 7 mg.

I wasn't sure Actemra was working so I decided to put it to the test and started tapering by 1 mg per week. I wouldn't recommend tapering by 1 mg per week but that's what I did. I wasn't feeling well when I reached 3 mg. However I knew 3 mg was the dose I needed to be on in order to have my cortisol level checked.

My cortisol level was low so my rheumatologist wanted me to stay on 3 mg until I could be seen by an endocrinologist. It took about 4 months to get an appointment and I stayed on 3 mg the entire time.

The endocrinologist verified my low cortisol level but said she expected it to be low since I took prednisone for 12 years. She wasn't very optimistic that I would be able to get off prednisone. My symptoms were muscle and joint pain which was tolerable. The overwhelming fatigue I felt was barely tolerable.

My endocrinologist wanted me to stay on 3 mg of prednisone until my next follow-up visit 3 months later. Let's just say I stayed near 3 mg for another 3 months but I did some experimenting. I did some fast tapers down to zero which I called a 3mg-2mg-1mg-zero countdown taper over 4 days before going back to 3 mg. Depending on how I felt, I sometimes went back to 5 mg before going back to 3 mg. I don't recommend doing any of this either.

At my next endocrinology visit my cortisol was deemed to be "adequate" and that it "might be safe" to discontinue prednisone. I told my endocrinolgist about the countdown tapers I was doing. She said I could probably do that again and just stop prednisone instead of going back to 3 mg.. My endocrinolgist said I should take prednisone again "if I felt the need' but preferably she wanted me to tell her first if I ever needed prednisone again.

When I stopped prednisone the first time I was only off for about a week before I needed 60 mg again. My ophthalmologist started prednisone because of a massive flare of uveitis which can also cause blindness like GCA.
https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/uveitis#:~:text=Uveitis%20is%20inflammation%20inside%20your,healthy%20tissue%20in%20your%20eyes.
It took me another year to get off prednisone again the second time I tapered off. That was 2 years ago and I have been off prednisone ever since as long as I continue to take Actemra.

My goal now is to figure out how I can stop taking Actemra.

The following link contains information about Actemra. It comes from the company that makes Actemra so it may be biased.
https://www.actemra.com/gca/considerations/gca.html#:~:text=ACTEMRA%20changes%20the%20way%20your,can%20spread%20throughout%20the%20body.
I'm probably biased because I feel so much better being off prednisone. It took a long time to get off prednisone but it was worth it. My cortisol level isn't a problem anymore.

My rheumatologist thinks I'm better off being on Actemra instead of prednisone. Actemra has risks too but so far I don't seem to have any major side effects from doing a monthly infusion of Actemra.

At first I needed 20mg/day for my PMR, and I had to split the dose because relief lasted 12-14 hours. I have now tapered down to 2 mg (with some setbacks but not bad) and am back in pain. I am a night owl and I suppose night people have different circadian rhythms or is everyone's cortisol highest in the early morning hours 4-5 am? I am going to increase by .5 mg and try splitting 2.5 mg/day, but don't know if the larger 1.5mg should be at night, or in the morning. I will experiment but does anyone else have this question? when I am down to 1 mg, should I take it at night or when I wake up?

Hi @begonia77, Welcome to Connect. It sounds like you are doing great with the tapering schedule. I started at 20 mg for both of my occurrences of PMR but never had to split my dose due to more pain at night. There are others who have discussed splitting the dose in the following discussions that might have some suggestions for you.

--- Splitting the dose: https://connect.mayoclinic.org/discussion/splitting-the-dose/
--- Divided dose or all at once?: https://connect.mayoclinic.org/discussion/divided-dose-or-all-at-once/

Do you keep a daily log of your pain level when you get up and your dosage for the day? How long have you been on prednisone?

I have been on Alendronate (a fosomax substitute) for two years now and my bone density has improved significantly. I got PMR last year and have been on prednisone for about 6 months. I've tapered to 14 mg so far. I've stepped up other activities to help prevent bone loss - food, exercise - and have concentrated on balance and safety. So far so good... Though I too will be working on that taper process as quickly as possible!

Welcome @pdxmac, It's great to hear you are concentrating on balance and safety along with other lifestyle changes. I believe they all help with PMR and overall health. There are many other discussions you may find helpful in the PMR and Osteoporosis groups. Here is a link to the two groups lists of discussions:

Polymyalgia Rheumatica - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/
Osteoporosis & Bone Health Support Group - https://connect.mayoclinic.org/group/osteoporosis/

Do you keep a daily log of your PMR level of pain when you wake up in the morning along with your prednisone dosage?

I have kept track of my dosage but not my pain level (and location). That is an excellent suggestion. I'll start tracking that as well as my exercise activities because I think that is also related. I'm still trying to figure out how much exercise is good for my body given other factors.

Hello begonia77, I am now at 3.5 mg per day. I take 3mg in the morning with breakfast and the half mg about 9pm. I find that works well for me, I have no morning stiffness. My next step is to take 2.5 mg in the morning and half mg at 9pm. You could try 2mg in the morning and the half mg in the evening. I believe that your adrenals will start working better if you are having a lower dose at night when splitting doses. Whatever you choose, I hope it works !!