History of PMR -- Interesting video presentation from past to present.

This is an amazing video with great info near the end about treatment options to help patients get off prednisone and particularly about Kevzara, a IL 6 inhibitor that was approved recently by the FDA for PMR. Thank you so much for sharing it.

@dadcue I would like to add my thanks for sharing this video along with @christopherc and others. I bookmarked it as it is something that will help a lot of struggling and newly diagnosed PMR members.

I'm more partial to Actemra (tocilizumab) but Kevzara would likely be equally as effective for me.

I started Actemra on January 1st, 2019. I will never forget this day after 12 years on prednisone for refractory PMR. I was off prednisone one year later. I would have been off prednisone sooner except for having adrenal insufficiency as a result of long term Prednisone use.

Prednisone was okay for the first two years. After a couple of years, I was having classic signs of steroid toxicity. I would encourage people to explore other options to Prednisone after a year or two.

IL-6 inhibition wasn't an option for me 15 years ago. I'm very excited that this option currently exists. However, I'm getting somewhat nervous about being on Actemra for more than 5 years.

Since Prednisone was discontinued, at least 5 more medications were discontinued that were being used to treat Prednisone side effects. No other additional medications have been added for Actemra side effects.

There's a lot to like about this video. He discusses exact body areas that are affected by PMR and this explains a lot of symptoms I wondered about, like sudden severe hip pain right around the tendon insertions he mentions. I went to the doctor and x-ray showed low level of arthritis. Also back pain that felt different from what I had before. I've also had a recurring headache at my left temple that my doctor is always concerned about ( possible subclinical GCA). I also like his discussion of the design of the research studies on Kevzara. I wondered why they were set up that way. I've had PMR for so long, over 3 years, that my doctor and even me have wondered if something else is going on. I don't think so. All my symptoms fit. I also think I made a good decision to go on Kevzara. I'll report on my experience with that drug another time.

This was an excellent and informative presentation, especially for those unfamiliar with the disease or those who question the weird, recurring symptoms. I wish he had touched on the severe fatigue and weakness that accompanies PMR as it is also quite debilitating. I will defintely refer this to anyone who has no clue regarding PMR.

Thanks for all your contributions to this support group. I wish you the best in finally riding yourself of PMR.

"I wish he had touched on the severe fatigue and weakness that accompanies PMR as it is also quite debilitating."
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I'm not so sure PMR does that. Maybe GCA causes this problem but I was never diagnosed with GCA. I agree that severe fatigue and weakness is a huge problem and it was debilitating for me too.

The presenter pointed out that muscle strength is normal in newly diagnosed patients with PMR. Historically, they did muscle biopsies but the muscles were normal so biopsies are no longer indicated for PMR. Muscle biopsies are done for other disorders but not PMR.

I don't think PMR made me excessively tired. I didn't experience severe fatigue until a year or two after PMR was diagnosed. It hurt to move but prednisone took care of that problem. Prednisone also energized me so I didn't have a normal sleep pattern. Sleep deprivation gradually gave way to exhaustion but that all stemmed from insomnia caused by prednisone.

I was tested for exercise intolerance about a year after being diagnosed with PMR. My exercise tolerance test was interpreted as normal. I carried on with my exercise routine as if everything was normal. I was doing a long distance bicycle ride when I thought I was going to die from absolute exhaustion. That exhaustion stemmed from prednisone induced high blood pressure. I shouldn't have carried on as normal when I was taking prednisone.

In my opinion, most of the severe fatigue and weakness was caused by adrenal insufficiency. In any case, all of that has improved tremendously since I was able to taper off prednisone. As far as I know, I still have PMR because I'm still being treated except not with prednisone anymore.

Thank you for this excellent video, invaluable info, answered a lot of questions for me. Have saved it to my health research files to share with other sufferers. Not sure about the debilitating fatigue, for me it is definitely related to how much inflammation I have. As my CRP started to finally come down (it's been 11 months now) along with the Prednisone dose, my energy levels have gone up considerably. Is that due to my natural cortisol production kicking in or the fact that inflammation is better controlled ?

My PCP was fond of saying the things which cause medical problems are usually "multifactorial." I liked it better when one thing was the cause of a problem as compared to many factors. Medical problems are easier to understand and solve when there is just one thing that causes it. The overwhelming fatigue was just as debilitating and sometimes more debilitating than the pain.

Muscle weakness and severe fatigue was caused by prednisone for me not pmr
Great video thanks
I am off prednisone after 2 years and experiencing lots of discomfort but will persevere waiting to see musculoskeletal physician
Prednisone caused me more harm than good and it is written in my medical notes not to prescribe it for me unless it is the only medication available to treat a life threatening illness
It’s good to hear there is work being done on prescribing alternatives not sure how available they are here in Aotearoa New Zealand
This video and people’s comments has been helpful thanks