How to address PMR pain while decreasing prednisone

You are so right about the markers, and I am grateful for your comments. My inflammatory markers were, initially, high. After a short period of treatment with prednisone, they dropped into the normal range. After about six months of reduction in dosage, as the dosage decreased, the pain increased. My doctor(s) would not accept that the PMR was still alive and well in my body because the markers did not reflect that. After a year (and four opinions later), I went to the Mayo Clinic in Jacksonville, FL. Within a short period of time, the rheumatologist told me that I was one of the people for whom the markers had no meaning. She increased the prednisone, and the pain went away.

Because of what I experienced, I have often wondered how many patients have an autoimmune disease which is affecting their quality of life, and it is going undiagnosed because some doctors are depending entirely upon elevated markers for inflammation to make their diagnosis.

Hi @kdmorris, welcome to Connect. Thank you for sharing your journey with PMR/GCA and how you were able to manage tapering off. It really helps others when you can share what worked for you.

Hello this is Beryl .....have an update on my condition .......our travels to Sicily were too much and coursed my PMR to spread to my waist .....now gone down to the hips and of course a lot more pain with it ......
Had my six month visit to OHSU in Portland and my Doctor, to put a long story short , wants to get me off Preds as I have been on it for ten years .....and has put my preds up to seven and a half for two weeks to get the inflamation down, and then five until I see him again....added to this is Methotrexate and folic acid.....tapering .....so it's watch this space and see how I get on with this new mix of meds....well must smile and put on a happy face .......Beryl

@rachelp What doctors were you seeing? I went almost a year with no diagnosis except that my gallbladder didn’t look good so they removed it. No one ever mentioned inflammatory markers. It wasn’t until I was taken to the ER in bad shape that they looked for inflammation and, boy, did I have it in my brain! A neurologist in Denver is treating me now. Everything affects my quality of life! Guess I’ll just have to accept this new 80% life.
I’m so glad you got to Mayo Clinic. Are your records sent to the local MDs who didn’t believe what you were saying? My MD gets everything so she knows what’s going on.
Long road.....

You're still moving. 🙂

Hi Barry
Mine started 2 years ago the same way. I was the most active woman i knew...travelling solo to India and Kenya...had my own business..building rock walls and gardens..etc etc. Then such a sudden screatching halt! The pain from head to toe, debilitating fatigue, i couldnt even bend over. 20 mg of prednisone and voila! I was back to myslf. I have been trying to reduce ever since and am now at 7mg. Today i am in pain but will take a T3 and that will clear up the day without upping the pred. I dont know that i will ever get completely off it, but i take comfort in knowing the side effects under about 9mg are negligible. I tòo have pain in my fingers and cant wear rings anymore because of the swelling. But
.....i give thanks everyday that it is not worse...and that it is not life threatening. Good luck with your reduction! I hope one day to be off it too!

@rachelp The trouble prednisone causes! Don’t I know! I, too, had vision changes which meant new glasses—not cheap. I have been seeing an ophthalmologist because of another vision prob so he watches out for cataracts. As for sweating problems, I had those, also. I get so warm and uncomfortable, but never actually sweat. I barely used a blanket this winter! Night sweats went away after awhile, thank heavens. I’ll be glad when I can taper off!

I just hate when my vision isn’t good! I’m so sorry yours is blurry. Have you seen an ophthalmologist (not an optometrist)? Ophthalmologists are doctors who are highly trained in diseases and conditions of the eye. My vision changed 3 times last year! The ophthalmologist said that prednisone can affect vision. The doctor can also evaluate the health of your eyes and is god to add to your list of MDs. I certainly hope things go well for you and your vision gets straightened out. Becky

Yes, I get to see the ophthalmologist this week as my rhumatoligist (all these long doctor names lol) referred me, so I will see what is going on with vision. I am concerned that the prednisone maybe has interfered with my vision, and was hoping as I am trying to taper down (at 4MG) vision would become clearer. thanks for your reply and Good luck to you too!!