After "recovering" from PMR, still decreased strength/stamina

Yes, found this type of diet great to combat the side-effects of pred, but sadly hasn't helped alleviate the PMR symptoms. Still having all the blood work (apart inflammatory markers) looking good after 2 years of pred makes the diet very worthwhile.

I've never regained my pre PMR/GCA fitness or stamina levels and osteoarthritis in my shoulder and neck has gotten worse. I'm off prednisone now, after a relapse of GCA..
I told a doctor friend I've felt kind of crappy the last few years and he said that's common with systemic inflammatory illnesses. He suggested I keep doing as much exercise as I'm able to.
Knowing this has been helpful, as I can put my malaise in perspective, and try to work around my new normal.

Ah, welcome to my club. After almost 2 years of tapering, I have been off of Prednisone for 10 days. I suspect that what I am feeling - fatigue, appetite issues, minor neck pain - as well as the usual issues, such as thin skin and droopy eyes. is the way it's going to be. I have read that cortisol levels may take from one week to several months to get back to proper levels.

As I tell my wife, it could be worse.

I’m about 3 years into my treatment. Prednisone did nothing for me but cause terrible side effects. I visited Cleveland Clinic and they moved me to methylprednisolone, and I was better that day. Then I moved to a weekly Actemra injection, which I hope to stop soon. My PMR was really severe and I even lost a great deal of weight early on. I still struggle with weak leg muscles and tight hips. Picking something up from the ground is difficult. I’m working on leg strength and flexibility but it’s an up hill struggle.

@megz
I think you are on to something regarding hydrolysed marine collagen powder supplement. I think it helped trigger or rapidly increased PMR progression in me.

Some researchers in China just published a study indicating possible links between immune system disruptions (like PMR, maybe) and muscle function. I wish I could get them to study my experience!
https://www.cell.com/cell/abstract/S0092-8674(26)00340-5

@robertmacwheeler
Like you, I lost lots of weight initially. It’s been a real balancing act keeping the PMR under control and still trying to not lose stength at the same time. Working or exercising too much and risk the PMR flaring up. For myself I could tolerate smaller and shorter physical work without consequences. Pushing too hard would come at the cost of days of recovery or the start of a flare. My PMR recovery would likely have been much smoother if I hadn’t been still working full time but that’s life. It’s a real tough thing to keep PMR controlled but not losing on the physical end.

@raven1955 I am currently on a faster taper because of emotional problems. I am fatigued and it gets worse. The brain fog and forgetting everything. Why didn't I research this drug!

@dswilson913
In the 10 years I’ve been on prednisone and have followed a couple forums dealing with PMR, it’s been interesting to read about the varying impacts of prednisone on people. For myself there have been some side effects but in the main I have been able to stay reasonably active. Others have so many side effects that appear to be almost as crippling as the PMR itself! It’s a real tightrope we walk.

@raven1955
I was on Prednisone for more than 12 years until I finally tapered off in a year after Actemra (tocilizumab) was tried. Before I tapered off prednisone I had a reckoning of sorts when I read my extensive list of medical problems that I had acquired during the period of time I took Prednisone on a daily basis. I told someone that I felt more normal when I took Prednisone. The person reminded me that normal people don't need to take Prednisone every day.

It wasn't until I tapered off Prednisone when I realized that I truly was walking on a tightrope. I would fall off and have a flare which turned out to be symptoms that were consistent with prednisone withdrawal and symptoms of adrenal insufficiency.

It is incredible how many medical problems have dramatically improved since I tapered off Prednisone. It took a few years to partially recover from long term Prednisone use. My doctors say that I'm still a "work in progress" five years after my last dose of Prednisone. I remember being told my side effects would go away when Prednisone was stopped. My strength and stamina took time to recover.

I'm still being seen by an endocrinolgist for metabolic side effects and hormone imbalances. I thought the symptoms of those medical problems were my new normal except for being told that they aren't normal.