Polymyalia Rheumatica

Posted by havana @havana, Aug 17 2:45pm

Hi, I am only new to PMR. Currently on 15mg daily tapering down to 12.5 next week. I was shocked when diagnosed as like many very active and kept quite a healthy life style. This has basically stops my husband and I doing things we love most. In the beginning I couldn’t even brush my hair, get out of bed without help along with many daily things we do and take for granted. Pregnisone has helped me immensely but I am worried with the side affects to come.
I am in pain in the mornings ,then afternoons I seem to get better, than better again late afternoon. I am normally a morning person so this has been a challenge. I get very fatigued and need a daily nap.
Like most of you my life style had to have adjustments.
I love reading all your stories and examples of how medication works differently for some.
We had never heard of PMR prior to this.
Thankyou

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

ckfitness | @ckfitness | Aug 20 5:19pm

Hi @havana
I too started on 15mg when initially diagnosed July 7, and like you my GP suggested tapering down quite soon after starting... From my experience it was too soon. I'm not sure if there is a required loading zone your body needs to adjust or store the steroids, but for me the taper was too soon.

I hadn't achieved mostly pain free when I was supposed to taper down to 12.5mg. Most of me was happy but my right shoulder was very often stiff and sore and mornings were still slow and stiff.

After a couple days on 12.5, I started noticing both shoulders hurt as did my hips and mobility became an issue again.

I decided to go back to 15mg and within 2 days I was again back to 90% happy, bar my right shoulder.

I've never understood why some people started on 20mg or 30mg whereas I started on 15? Is my dosage too low? Is that why my shoulder for example hasn't recovered? It's always hard to know.

I should have been dropping from 12.5 to 10mg in a weeks time, but instead I'm going to try dropping from 15 back to 12.5. Hopefully the extra 3 weeks on 15 will help this time.

Of the many helpful opinions I've read on this site rings true...Everyone seems to have slightly different ways they deal with or react to PMR. There isn't a road map to recovery. But I definitely found mental relief reading how others are dealing with this, as I instantly realised I have much in common and my symptoms are in fact normal and my worry that something is not right...Was indeed irrational.

Hopefully you find this forum as useful as I have through your new journey.