PMR and prednisone

Posted by gramsof6 @gramsof6, Sep 19, 2024

I was diagnosed in April with PMR. Because it was mainly in my shoulders I saw an orthopedic surgeon who put me on an inflammatory. Shortly there after I had an appointment with my rheumatologist and diagnosed me promptly.
He started me on 5mg 2 to 3 a day of prednisone.
The problem is I am a diabetic but was only on metformin. Now I am using small doses of insulin. What I don't understand, did you stay on a consistent everyday?
On days I feel great I avoid taking my prednisone. Recently my pain is now in my thighs which is affecting my ability to walk. I have a granddaughter that plays college soccer, 2 granddaughters that play high school varsity soccer and we attend high school football games. This means that at least 4 times a week I am climbing bleachers. I believe this is a contributing factor to the thigh pain. I am OCD about my house, enjoy cooking and canning and I am also a quilter. I am finding these activities difficult too. I am really confused about the proper way I should be taking my prednisone. My rheumatologist is aware that I am concerned about my sugar and has not established a definite guide line for taking the prednisone. I use infrared heat, supplements, oils and Voltaren
I would appreciate any suggestions. I did receive a steroid injection in one arm because the bursa was so inflamed it caused a large painful bump. Has anyone tried physical therapy or massages? Today was horrible and I retreated to bed. I am so glad I found this group and am looking forward to any suggestions. We are planning a trip to Gatlinburg and would enjoy hiking. Thank you, Deb from Ohio

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

John, Volunteer Mentor | @johnbishop | Sep 24, 2024

In reply to @bostonredsox1945 "Has ant doctor for PMR recommended cannabinoids and removing Prednisone?" + (show)

I’ve never heard of a doctor or rheumatologist using or recommending a cannabinoid as a replacement treatment but maybe others might have experience. Doesn’t make any sense to me. I can see where it may help with pain but not with inflammation or returning you to normal.

gramsof6 | @gramsof6 | Sep 24, 2024

In reply to @oldbtstlshrp2 "Out of curiosity; do you still have all the side effects of the Prednisone daily? Have..." + (show)

No side effects I amaware of except rise in
Insulin which is getting better.

sharonmc18 | @sharonmc18 | Sep 24, 2024

In reply to @oldbtstlshrp2 "Thanks for that input. I am constantly experimenting with splitting doses between A.M. & P.M., different..." + (show)

I do the same thing. Trying to get optimal cortisol levels to keep me going during the day. Seems like some days there are other factors where fatigue dips and legs get wobbly. And I am tappering so depending on that schedule…I think everybody experience is different so I think we have to listen to our bodies. Thanks

allinge | @allinge | Apr 3 11:23am

I was diagnosed with PMR this past February and have been on Prednisone since. Just weened down to 2mg per day in the morning. We live in an area close to the mountains and the weather can change from snow to warmth in a matter of hours. This definately affects my PMR. The pain is so bad that I can hardly get up and walk, let alone do stairs. It's worse in the mornings til about noon. I was diagnosed with Costochondritis many years ago and this week I had some very severe chest pains that I almost went to the hospital. I read up on this website and I saw that others have had the same problem. I went to my doctor the next day and he confirmed that PMR can affect this. I've never had the pain that I've experienced in the past few months. I don't know if I'll ever get off taking Prednisone.
I glad I found this group that can relate to what I'm going thru. It will take over a year before I can see a rheumatologist as they are so back logged here. One very interesting fact I discovered about PMR is that it is prevalent in people from the Scandinavian countries.

art43 | @art43 | 6 days ago

In reply to @allinge "I was diagnosed with PMR this past February and have been on Prednisone since. Just weened..." + (show)

Your PMR is probably not in remission, and if so, you are not on the proper prednisone dosage. You really need to find a doctor soon that can treat you correctly. It does not have to be a rheumatologist.

tuckerp | @tuckerp | 6 days ago

In reply to @art43 "Your PMR is probably not in remission, and if so, you are not on the proper..." + (show)

I agree with art43. It would be impossible to get to 2mg pain free if the PMR is still active. Mine lasted 6 months and I feel mine went into remission fairly quickly. PMR can stay active for years in some.

ailish | @ailish | 5 days ago

In reply to @nancy53 "So sorry that you have PMR. It's a hard disease to regulate. I imagine even harder..." + (show)

The video was very helpful
Thank you

mimi1204 | @mimi1204 | 5 days ago

In reply to @tuckerp "I agree with art43. It would be impossible to get to 2mg pain free if the..." + (show)

How did you know that your PMR was in remission after six months? I started being treated in December and my rheumatologist started me at a low dose of 4 mg of prednisone. I never had to go any higher as that dosage took away all my pain. I feel like my PMR is a mild case. Just wondering how you knew your PMR was in remission and how soon after diagnosisyou started tapering down.

tuckerp | @tuckerp | 5 days ago

In reply to @mimi1204 "How did you know that your PMR was in remission after six months? I started being..." + (show)

Your PMR does sound very mild. Thats what makes this disease so hard for one to say this works when it doesnt work for someone else. I believe just from being on this site and a facebook site that my 6 months was fairly mild as well. I would almost question whether PMR was the correct diagnosis at 4mg. Prednisone can be used on almost any inflammatory disease or reaction. In any case, if it worked thats great. I started at 20mg. Pain was gone in 4 hours. Within the first 2 weeks you can play with the dosage to get to your lowest possible dose. After about 2 weeks the prednisone is supplying your cortisone and your body shuts down production. I went to 15mg after 2 days. No Pain. 2 days later I dropped to 10mg. No pain. 2 days later I dropped to 5mg and had trouble with movement. I went back to 10mg and no pain. I would try to taper about once a month to 5mg and was unable to taper. On the 5th month I tapered to 5mg and only slight pain. I went about 2 weeks on 5mg then tapered to 2.5mg. I had some slight discomfort but manageable. After 2 weeks I went to zero. I had some slight discomfort that an alleve would fix for 3 to 4 months. It took almost a year to feel like it was gone. To answer your question, I went by how well I responded to lower the dose. You can check sed rate and ESR but those tests were not elevated for me. The testing was not effective. I would continually try to reduce my prednisone. My opinion is you should move from 4mg to 3mg? see what happens and keep trying to reduce. Move as quickly as your body allows. The prednisone makes you feel wonderful but the long term use is pretty destructive.

ailish | @ailish | 5 days ago

I'm struggling in the mornings with my arms. I'm currently on 10mg & my doctor suggested I go to 9mg after 4 weeks which will be tomorrow. Has anyone tpered whilst still in pain