PMR - Decreased prednisone and pain returned

@ekgilpin1 The blood tests will confirm it for you.

I have no blood test markers …they are completely in range but my rheumatologist evaluated my symptoms, age and X-rays. I started on 8 mg Medrol (methylprednisolone) and now down to 2 mg. If I try to reduce further, joint stiffness and inflammation sets back in. Was told it could be withdrawal symptoms but it gets so bad and unable to move about. No way to test if no markers to compare.

You are a Saint for being a caregiver to your wife. I understand the ravages of steroids and they are widely used in neurosurgery. I have very mixed feelings. I had a hard time on another forum hearing how steroids are promoted as a miracle for PMR sufferers and the "only option." I think PMR patients should be clamoring for better options or nothing will ever change.

You might be interested in a dialog I had on another forum. The person who communicated with me was a Saint too. She made me aware of the consequences of long term prednisone use before she died of complications after an adrenal crisis. This conversation happened virtually about the same time my rheumatologist suggested I try Actemra. It was a low point in my life. I desperately wanted to be off prednisone and I was feeling down. I want people to hear her words about the
subject.

The flip side was another forum that promoted lifelong prednisone as a better option than Actemra. One person in particular wasn't very supportive. The other forum collectively of many PMR patients was great though. Unfortunately, the opinions were dominated by just a few individuals. This forum is truly an asset and much better because all viewpoints are respected.

I have posted the following discussion before but I don't know if anyone ever reads it. I think it is good information but I needed to rethink my opinions about Prednisone.
https://www.healingwell.com/community/default.aspx
Most doctors realize what happens when someone is on long term steroids. I can never "encourage" any person to take more Prednisone for any longer than is absolutely necessary. Then again, I took high doses of Prednisone for a very long time. I don't know what is the best thing to do. I will say, Prednisone prevented me from being addicted to narcotics so there are benefits to taking Prednisone.

The links you and others often provide are helpful, and can avoid repetitive explanations. Wishing that the admins would establish a library of PMR-relevant links to reputable academic sources (e.g., nih) that relate to the recurring issues presented by participants.

I have no blood test markers …they are completely in range but my rheumatologist evaluated my symptoms, age and X-rays. I started on 8 mg Medrol (methylprednisolone) and now down to 2 mg. If I try to reduce further, joint stiffness and inflammation sets back in. Was told it could be withdrawal symptoms but it gets so bad and unable to move about. No way to test if no markers to compare.

I’ve had no markers and have had PMR for almost 4 years now…was off prednisone after long taper but pain never left during or after finishing the taper …couldn’t walk or stand for long …really reduced my life . I thought it was osteoarthritis kicking in but dr put me on 5 mg of prednisone to see …did nothing …so jumped to 20 mg …with in 3 hours I could walk normally ..I felt like a miracle had happened …that was yesterday …stiff this morning but nothing like before …I’m to stay on this amount for a week and then see where we go from there…being pain free is certainly wonderful …fyi I’m on Actemra shots biweekly .sulfasalazine hydroxychloroquine daily but haven’t been this pain free in all that time since diagnosed

hello @virginiaj and @sherylp
good morning --Virginia's plan is pretty much my routine as well ; and do not overdo : )
Because of PMR I went on medical leave for 1 1/2 months last spring and then retired in Dec . I have tapered from 30mg to now 2 mg . The Prednisone withdrawal created some weird, unusual bouts of pain and fatigue at the 7mg to 3mg range - but all the discussions in this PMR group about adrenal insufficiency etc. were a big help for me to navigate thru.
I will say this - at suboptimal doses of Prednisone last year, i had really prolonged shoulder stiffness exactly 2 days after using my arms above my head ( pruning, using blow dryer , zumba in the pool ) . I noticed a few other commenters who mentioned the same observation at 48 hrs after ( some kind of activity) .

I will attach a manuscript from Germany that i found last year - an interesting take on exercise and PMR and women's health - let me find it

@nyxygirl I have just started tapering from 40 mg to 35 mg. I'm experiencing a dull headache, nausea and tiredness. But most concerning is that I've developed a painful right shoulder. My original PMR symptoms did not include upper body pain.
I use a mouse with my laptop and I'm wondering if I'm simply developing some kind of repetitive stress injury separate from the withdrawal. On the other hand I am concerned that it's a relapse that's now affecting my shoulders. I do not have any hip/thigh discomfort as before. Has anyone just been affected in one shoulder? It seems PMR can follow some atypical courses.