Working with PMR

good morning @rnm would you like to share more about where you live , what you do, how large is your company , how far is your commute , how old are you ? How are feeling after one month ?
I worked in a small bioTech company and told everyone there my diagnosis. I sent them some of the manuscripts that I found useful. In fact, in general I shared this site : PMRandyou.com with just about everyone in order to spread awareness. Turns out my cousin had PMR , my ex-boss had GCA and a friend also still has PMR !
When at a suboptimal dose of Prednisone, we were planning for me to take a medical leave of Absence -which I did end up doing. This requires help from HR ( in Massachusetts anyway).

I used to check in with the just the three women in my company as I described here :
https://connect.mayoclinic.org/comment/1218842/
And I drew this on the white board before I left work , hoping to give them a good laugh!

ha ha -- three times a day and body divided into four sections referred to my pain journal/excel file heat map! : ) you can see an example in my spotlight : https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/gardening-wordle-and-living-with-pmr-meet-nyxygirl/

Also here was another recent conversation about working and PMR : https://connect.mayoclinic.org/discussion/pmr-and-work/

I told my colleagues that I was taking Prednisone but they weren't interested in why I was taking Prednisone. Everyone knew what Prednisone was because they were nurses. They were concerned about the fact that I was on Prednisone but didn't seem to understand PMR and they didn't care.

It was all good-natured comments when I had behavioral changes when I was on Prednisone. I'm normally calm, cool and collected as my basic personality trait. Prednisone made me hyperactive and anxious. I realized whenever someone asked me how much prednisone I was taking it was a clue that I needed to mellow out!

I work full time. I don’t discuss personal issues with colleagues in general. 🤷🏼‍♀️

I have told my friends and boss I am on steriods they really had never heard of PMR .
Does any one have a "good" experience weaning off prednisone? or all experience flare ups ?
I am down to 5mg now , feel a bit more achy than before but manageable

I have had PMR for five years. I have been on prednisone since then. I was able to get to 1 mg with the help of infusions of Actemera. Before that, I would have to up my prednisone to get through a flair. When in a flair I would double my dose for two days then go back down. The key is to stay ahead of it, don’t let the flair get out of control.

Hi @eby, Good experience tapering off of prednisone is probably not the way most of us that have done the prednisone tapering dance would describe the process. 🙃🙂... but it is one of those experiences you don't tend to forget. It's good to hear you are now down to 5 mg dose. You might find it helpful to look through the member comments and discussions on managing PMR symptoms. Here's a list from a search of Connect - https://connect.mayoclinic.org/search/discussions/?search=pmr%20managing%20symptoms.

One of the things that I think really helped me was keeping a daily log of my pain level when I first got up in the mornings along with my dose of prednisone for that day. That way it made it easier to determine if I should taper down or possibly go back up to half of my last taper down to see how I felt the next day. My feel good days in my daily log were ones that my pain level was 2 or less when I woke up. Do you keep a daily log?

Anytime you can wean yourself off Prednisone is a good experience. The process of tapering off Prednisone isn't always so good.

Given there isn't a single best way of tapering off Prednisone, it doesn't matter how it is done. It took me 12 years to get off Prednisone with an assist from Actemra. My rheumatologist said it was "remarkable" that I was able to taper off prednisone. He also said it was "amazing" but I think he was referring to Actemra.

not a daily one more monthly

Does everyone experience flare ups after?