Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Hello @123suew, I would like to welcome you to Connect and thank you for sending me a private message. I thought I would answer your message in this discussion - "Polymyalgia Rheumatica (PMR): Meet others & Share Your Story" so that you can meet other members who also have PMR and you can learn some of the tips that have been shared. If you click the VIEW & REPLY button at the bottom of the email notification for this post, it will take you to this post in the discussion.

You mentioned you have been diagnosed with PMR and have been on prednisone 20 mg for 4 days. You also mentioned that since starting the prednisone you have little pain but you still have fatigue and you can't walk far with out being out of breath and weak. You are wondering if this is normal. In my 2 occurrences of PMR I started at 20 mg of prednisone and it did relieve my pain but I still had some fatigue. I had to force myself to keep moving to help with the stiffness. I think it was worse for me during my first time with PMR because I was a lot heavier then and I think that added to the fatigue.

Fatigue or low energy level can be a side effect of the prednisone for some people. The information on Mayo Clinic's website for the drug says if you have more than one of these symptoms you should discuss it with your doctor / rheumatologist.
-- https://www.mayoclinic.org/drugs-supplements/prednisone-oral-route/side-effects/drg-20075269?p=1

Have you shared your fatigue and shortness of breath symptoms with your doctor or rheumatologist?

Hi,
Just visiting as a new person to the support group. I was diagnosed with PMR 12 years ago so I'm not a stranger to PMR. I'm currently doing well although the road to where I'm currently at was quite bumpy. I'm not a stranger to prednisone as I was taking prednisone bursts for other autoimmune problems for 20 years prior to the diagnosis of PMR. I was diagnosed at age 54, retired at age 62 and I'm currently 66 years old. My rheumatologist thought that taking prednisone for 12 years for PMR was too long and prescribed Actemra (tocilizumab) and it has worked well.

Hi,
Just visiting as a new person to the support group. I was diagnosed with PMR 12 years ago so I'm not a stranger to PMR. I'm currently doing well although the road to where I'm currently at was quite bumpy. I'm not a stranger to prednisone as I was taking prednisone bursts for other autoimmune problems for 20 years prior to the diagnosis of PMR. I was diagnosed at age 54, retired at age 62 and I'm currently 66 years old. My rheumatologist thought that taking prednisone for 12 years for PMR was too long and prescribed Actemra (tocilizumab) and it has worked well.

Hi dad he, can you explain a little more about tocilizumab? How has it worked for you? How long have you been on it and how has it enabled you to taper the pred? What dose of pred are you on now, and what is your taper plan? Thanks so much.

Aloha

I have had PMR for six years I am 67 years old and was on prednisone for five out of six years.
I could not maintain remission for more than two months before PMR stuck it’s ugly head out again and I was nearly crippled again.!
I moved to Hawaii and found a Doctor Who recommended low-dose naltrexone
I have been on LDN now for almost one year
I think it’s something that the mayo clinic needs to look at and study.

Aloha

I have had PMR for six years I am 67 years old and was on prednisone for five out of six years.
I could not maintain remission for more than two months before PMR stuck it’s ugly head out again and I was nearly crippled again.!
I moved to Hawaii and found a Doctor Who recommended low-dose naltrexone
I have been on LDN now for almost one year
I think it’s something that the mayo clinic needs to look at and study.

I first started Actemra (tocilizumab) on January 1st, 2019. I liked the symbolism of starting a new medication on New Years Day. After 10+ years I had given up on ever being off prednisone and I was basically stuck on 10 mg. I met a new rheumatologist who knew my entire health history. I didn't think there were any options because multiple DMARD's had already been tried. I had never heard of any biologic for PMR. I still remember our conversation at that visit and it concluded with, "IF -- Actemra was approved would I be willing to try it." I agreed but only because I didn't think it would be approved.

When I started the Actemra injections they were originally ordered every 2 weeks --- "to play it safe" according to my rheumatologist. Nothing much happened for a month or two but I tapered prednisone by 1 mg per month. I don't remember how I tapered after that, The taper was based on symptoms and was about 1 mg per week. I was told to stay at 3 mg pending a consult to the endocrinologist to evaluate for adrenal insufficiency. I waited 3 months for the appointment but the endocrinologist thought my adrenal function was "adequate". That same day I went from 3 mg to 0 mg. The endocrinologist prescribed hydrocortisone just in case I needed it but I didn't need it. The taper from 10 mg to 0 mg took about 6 months total. I was off prednisone for 5 weeks.

The story gets complicated after that because Actemra was stopped for 3 months and Humira was tried because of a different autoimmune problem. I also had to go back to 60 mg prednisone. I tapered down from 60 mg to 15 mg while on Humira but the pain from PMR returned. Actemra was restarted but the dose was increased to weekly injections.I was comfortable tapering prednisone from 15 mg back to 0 mg in 6 more months. I have now been completely off prednisone for 3 months.

I still take Actemra injections every week.

Hi,
Just visiting as a new person to the support group. I was diagnosed with PMR 12 years ago so I'm not a stranger to PMR. I'm currently doing well although the road to where I'm currently at was quite bumpy. I'm not a stranger to prednisone as I was taking prednisone bursts for other autoimmune problems for 20 years prior to the diagnosis of PMR. I was diagnosed at age 54, retired at age 62 and I'm currently 66 years old. My rheumatologist thought that taking prednisone for 12 years for PMR was too long and prescribed Actemra (tocilizumab) and it has worked well.