PMR and Work

Have you tried splitting the dose to take a smaller part of the daily prednisone in the late afternoon or early evening? That has kept mornings pain-free for me and many others. The main dose is still in the morning, and the second dose must be smaller so as not to affect sleep or to upset the natural cortisol cycle that has cortisol highest in the morning. My current dose is 6mg a day which I split to 5mg in the morning and 1mg with dinner around 6pm. A small change to how you take your prednisone can make a big difference.

Absolutely agree with @megz. I was diagnosed 1 1/2 years ago, also at age 63. Started at 20mg and was very stiff and with 5/10 pain in the AM and feeling better at lunch. After a week or so, I talked with my PCP (who diagnosed the PMR) and we decided to split the dose. Started with 10 in the AM and PM, then moved to taking 2/3 in the AM and 1/3 in PM. This has worked very well for me. I was down to 5.5mg this past September and had a bit of a setback and jumped back to 8.5. I am currently at 6.5 (4.5 and and 2 PM) and doing much better. I'm currently tapering .5mg every 20 days and keeping my fingers crossed.

Hope this helps!

As megz also says, splitting your dose might make a world of difference. I could only work from home before doing that and my morning ms were painful. I would avoid sitting for longer than a few mins at a time because of the pain when I stood. After splitting my dose it was a whole different life. My inflammation markers decreased, I could exercise mostly normally, do just about any activity I wanted.

I was 69 and still working part time. When my pcp decided I had pmr I started with 15mg prednisone and she gave me a work excuse because mornings were such a struggle. In 2 weeks I saw a rheumatologist who upped the dose to 20 mg. He told me to be careful about being around sick people, it was the first week in Jan. Sure enough I got the worst case of bronchitis so be careful esp this time of year. Once mornings got better, i went back to work. I remember splitting the dose in the beginning. I am not splitting the dose now.

Hi @neztrop,
I was also 63 when I was diagnosed with PMR and my plan to work until 67 went down the tubes pretty quickly. I started at 20 mg of Prednisone, which was very effective, but when I started tapering, I was pretty miserable. My husband pushed hard for me to retire because he could see the toll that PMR was taking and in retrospect I am very thankful that I took his advice. I think most of us have learned that stress is a definite contributor to the disease so if your job is stressful I strongly encourage you to factor that into your considerations. My job involved supporting State level Emergency Public Health Managers so COVID stress had already taken more of a toll than I had imagined. Only you know how much of a load you can handle but working longer is definitely not worth abusing your body. I am extremely grateful to have had the resources to make an early exit because on my tough PMR days, I am glad not to have the pressure of missing important meetings or work events. Biggest blessings as you make your plans! ❤️

I started with AM/PM doses but after seeing Rheumatologist they switched me to solely an AM dose of 20mg. Been doing AM only for 2 months. It’s hopeful for me to see in your comments that there are improvements over time. I’m certainly not feeling that as I’ve been tapering this short amount of time.
Thanks

Wow! Many thanks for your sharing. I can’t tell you how much it means to me.
Have you fully tapered off is Prednisone?

O- M- G !!! hello @neztrop check out his conversation https://connect.mayoclinic.org/comment/870000/ -Ground Hog day indeed !!

To answer your question about work - I went on Family Medical Leave of Absence - we have that here in Massachusetts instead of short term disability. I never knew by what time of late morning I would feel OK , I could barely do any work from home because I was not up to it. And the thought of driving was way too scary.

However --for me and others increasing a suboptimal dose of about 20-15mg to 30 mg did the trick ( however my PCP would not prescribe higher dose - so do you already have a Rheumatologist) !! As I noted , my heat map of stiffness for three times during the day turned completely green at 30 mg not 20 mg! Did your highest dose ever rid you completely of pain and stiffness ? Like magic ?

And I totally agree with @megz about the split dose . And are you keeping a pain journal ? Check out PMRandIL6.com website for some great slides.

Unfortunately, I am still taking 17 mg of Prednisone and I have recently had to add a biologic. My inflammatory markers and pain went off the charts with every Prednisone decrease and I did not experience the same level of relief from the dosage. I am taking weekly injections of Actemra and have finally been able to lower my prednisone dosages without much drama. My pain is improved though still present. I have been on virtually the same level of Prednisone for almost 3 years so I am grateful that Actemra is giving me a shot at finally getting off of it. I was very encouraged to learn that your pain has been fairly limited to mornings. Looking forward to learning what you decide so please keep us posted!

The Last 2 months it’s been just the AM dose. They moved PM due to sleep issues.
I had minimal pain with 30mg. But since we started the tapering it has been hard.
I’m at 20 now and dropping to 17.5 on Thursday.