Has anyone fought Polymyalgia without prednisone successfully?

Posted by ddonnagirl1 @ddonnagirl1, Apr 16 9:00am

I have been on Prednisone for almost two years. I started at 60mg and just now dropped to 2.5. My body is so sore at this point but not like the initial diagnosis. My blood markers have always been normal. My Rheumatologist insists that my Polymyalgia is in remission. She wants me off Prednisone ASAP. My question is has anyone else experienced joint pain and muscle aches and just rode it out. Does the pain finally go away. Is it the adrenal glands struggling to come back. Has anyone fought Polymyalgia without prednisone successfully? Thanks 😊

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

girastancil | @girastancil | Apr 19 7:55am

In reply to @glinda47 "Wow!!! Lucky you. How long had you had PMR before that happened?" + (show)

my PMR started in March 2021, started the celebrex in July/Aug of 21. Not much improvement and then the rash developed in Oct. of 21. Stopped the celebrex and immediately started getting better. Thought I'd feel worse once I stopped but felt better the day after almost and have improved ever since.

glinda47 | @glinda47 | Apr 19 9:49am

Amazing. And may you continue to feel great. Was actually looking at Celebrex this morning. Looks like it can be a tough drug. Have any stomach or other digestive/gastric issues with it?
Be well and thanks.

michwest | @michwest | Apr 20 10:11pm

In reply to @glinda47 "Amazing. And may you continue to feel great. Was actually looking at Celebrex this morning. Looks..." + (show)

Hi @glinda47 - I have been taking Celebrex 200mg for a year now at night with dinner and it hasn’t affected me negatively and really takes the edge off the pain by morning.

glinda47 | @glinda47 | Apr 21 10:23am

Hi mich,
Tx for the hopeful reply. No side effects from the Celebrex?

cfastwolf | @cfastwolf | Apr 21 10:42am

I developed PMR end of January, but was always able to get out of bed, exercise, dress myself etc. I couldn't see a rheumatologist until Ap., so I took 1 200 mg of ibuprofren at night, still had some pain and stiffness, but was able to get through things. In Ap. my markers had dropped to normal, but I still had pain/stiffness, though less than the initial flare. The rheumotologist put me on 400 mg twice daily, but it upset my stomach, and even going back to 200, my stomach was upset, although I was talking Pepcid too. Now we're trying 7.5 Molaxacam, plus 1 20 mg Prilosec in the morning, one 20 mg Pepcid at night. The pain and stiffness are gone mostly (I can tell they're their in the background, but I can move normally) but I'm still wrestling with stomach issues. I need to travel for my job, so didn't want to go on Prednisone when I couldn't contact my doctor. I'm scared by all the side of effects of NSAIDS, but equally of those of Prednisone. Not sure this helps, but I did want to share that NSAIDS do provide some relief for some of us.

elizadolittle | @elizadolittle | Apr 21 2:00pm

I've been on 5 mg Prednizone every other day for years. I have spinal stenosis as well. I had a back operation a little over a year ago. After the operation, I was desparate to get off the opioids. I tried Advil. I didn't exceed the daily dose but I took it for a week straight (or more). It sent my blood pressure sky high and I and the doctors thought I was having a heart attack.

Somehow or other I came up on an add on the internet for Heat and Sooth. I tried it. I gradually stopped using it. Then about two weeks ago, I was in constant pain and Tylenol Extra Strength really didn't do anything during the day. I would have a short snooze after dinner. I would wake up pain free and I could work on the computer until midnight or later. The same thing the next day.

I wondered if the Heal and Sooth actually worked so I've gone back on it. I woke up in the middle of last night and realized I was pain feel--and I am still pain free today so far.

I will keep you posted to see if my "snake oil" really works. I have a bottle and a half left over. By the time I finish those, I should have some idea if the Heal and Sooth really works.

One of the reasons I quit using it was because I seemed to be spending more money of health enhancers (Dr. Gundry's MCT, etc.) and an arm's length of vitamins along with the Heal and Sooth.

michwest | @michwest | Apr 22 2:53am

In reply to @glinda47 "Hi mich, Tx for the hopeful reply. No side effects from the Celebrex?" + (show)

No not at all - I always take with a meal though. I take prednisone in the morning and Celebrex at night.

glinda47 | @glinda47 | Apr 22 10:21am

In reply to @elizadolittle "I've been on 5 mg Prednizone every other day for years. I have spinal stenosis as..." + (show)

eliza, may I ask how much advil you were taking per day?
I take 1 200mg pill/day.
Will look into Heat and Sooth.

gailg | @gailg | Apr 22 11:54am

In reply to @cfastwolf "I developed PMR end of January, but was always able to get out of bed, exercise,..." + (show)

I developed what I am sure is PMR about 4 years ago. Saw multiple doctors but my blood work was always in the normal range so I was told I didn't have it and sent to a different doctor. Finally, I gave up and took massive doses of ibuprofen to just survive. Gradually got about 80%+ better and I can do everything I want with just minimal pain. Still usually take 3-4 Ibuprofen a day but I decided that was better than prednisone. I have yearly blood work and so far the ibuprofen seems to not be causing me problems. I know this isn't for everyone but it has worked for me when all doctors gave up on me.

ddonnagirl1 | @ddonnagirl1 | Apr 22 11:59am

Thank you so much for your reply. I’m down to 2.5 mg of prednisone and desperate to get off of it. I feel as if I am having a relapse but do not want to up my dose so am trying to live through it with Ibuprofen as well. How long did it take for you cross over to that 80% mark? I’m glad you’ve had no ill affects from the ibuprofen.