Should have listened to advice from group - PMRGCAuk

11,265 members20,514 posts

Should have listened to advice from group


When I dropped from 7 to 6.5 I had major pain (similar to when I was first diagnosed). When I decrease doses it usually stops after a few days - this lasted. I wrote the group and you suggested I go back up to 7. Being stubborn I thought I could tough it out. At regular visit with Rheumy she increased it to 8/7. Pain gone. Labs came back with ESR of 55. Should have listened to you.

8 Replies

Hindsight is a wonderful thing!

Hopefully you will soon get back on top of it.


Hopefully lots more of us will read your post, as it contains a very valuable lesson, which many of us have already learnt (but forgotten!).

I think your experience is par for the course for pmr sufferers.

Good luck


Do not beat yourself up. Coming down from 60mg for GCA, due to Actemra shot added. I thought I would never get off the couch again. Two months of extreme fatigue. It is hard to tease out what is going on at times. Our body is hard to read, as many symptoms that can change. I am just glad you felt relief again. Glad the higher dose is helping.

Learning to listen to, and read our bodies is a skill that grows over time. Add to the mix pred with drawl, side effects, pre-existing or new health issues, stress, menopause and everything else under the sun, and we’re bound to go in the wrong direction at times. Live and learn.

Glad you have relief for your symptoms!

DorsetLadyPMRGCAuk volunteer

We rest our case, m’lord. 🤔

Life is full of should haves. Don't beat yourself up about it!


Experience is a bitter teacher but you’ll know for again, glad you are feeling better. 🌺

You may also like...