PMR and the taper

This is Helene in Georgia.
I was so glad to come across this Connect!
It has been extremely helpful- I only wish I had found it 18 months ago when I was first diagnosed with a severe case- unable to dress myself, get out of bed, etc. That was January, 2024 when they started me with 20 mg of prednisone. That was in the Emergency Room. My rheumatologist concurred.
It wasn't until October 31, 2024 that I was put on 6 pills of methotrexate (MTX)- a total of 15 mg.
I was on 7 1/2 mg of prednisone at the time.
After a few weeks I felt so much better. It just took a few months. Give it a chance. I was thrilled with the relief.
I have tapered myself down to 5 mg. of MTX weekly and 2 mg daily of prednisone. I still experience some soreness and stiffness but exercise daily. I have to take a 30 minute nap when the fatigue gets bad.
I have to taper 1/2 dose at a time and it takes weeks until I feel better. My rheumy says I am the only one she knows who has to taper 1/2 dose at a time. Well, it's my body, not hers. lol
Yes! Give the MTX a couple of months- it made a difference for me.
Oh, I'll be 84 years old next month.

Hello Helene @kathren, Welcome to Connect. Thank you for sharing your experience! There are a lot of members who have shared their experience in the PMR group. You might find it helpful to scan through the different discussions in the group - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

I definitely agree with "it's my body, not yours". We are all different when it comes to tapering. I'm 82 now and my 2nd flare of PMR has been in remission for over six years now and I'm hoping it stays that way. It's great to hear that you also exercise daily. Do you keep a journal or daily log of your level of pain and the dose of MTX and prednisone?

Hi!
Good to hear from you, John. Thank you for the information.
I keep a journal of my daily dosage of MTX and Prednisone, my yoga and walking exercises, my dreams, and other observations. I am in a writing class so the latter observations are helpful for class.
At this point I no longer note the discomfort level each day- just as average over the week unless it increases.
I think it is probably a good idea to return to pain level numbers which I did when it was severe and when I could actually write. I couldn't even do dictation on my phone or my computer since I couldn't use my hands for some time.
It sounds like you are doing well. That is heartening news!
Thank you for sharing. May you have no more flare ups!
Helene

Okay. I have been off Prednisone for several months. I have had Symphoni infusion and having pain in walking and moving. I am ready to give up completely. I called in to my rheumatologist and she said to go back on 1 mg
Prednisone 3 times a day. I have tried so hard to get off it that I hesitate to go on that merry-go-round again. I think that dosage isn't high enough to make a difference and it led to diabetes medication that I am now off. Nothing has worked and they don't seem to know how to treat it. Orencia infusion made me very sick and I had to stop. I am up in age so as I said - I am REALLY ready to give up. It is like being alive but not really living. What I loved to do is gone.

Ask Dr abt Kevzara…..game changer for me.
I was stuck at 8mg prednisone and was able to taper quickly.
After 7 doses of Kevzara (over 14 weeks) I’m down to 2.5 mg prednisone. I have been dropping 1/2 mg weekly lately. No side effects, or PMR flares. Hope to be off by August 1. 🤞
Note: my dr wanted me to go cold turkey after starting Kevzara, but I was not comfortable with that and have been doing the self administration.
Good luck

Thanks so much. I will ask about Kevzara.