Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

That is typical with PMR yes you loose your strength I use to bench press 120 lbs & when I came down with PMP it was hard to do 40 lbs now I am back up to 80 lbs don't despair it will get better. Like I had said in my previous post try pull downs.

Yes John I started on Qunol liquid Turmeric 1000mg/day 2 weeks ago & it does help

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Hi: I'm Chris and was just diagnosed with PMR (a week ago) and am now on 10 mg. Prednisone. Let me go back to the beginning...
In December of 2018 I was diagnosed with breast cancer. I went through the procedures of chemo, surgery and radiation, and by December of 2019 got the all clear. I did develop neuropathy from the chemo and am still living with that, but it seems a lesser problem than the PMR. In late January I had my 5 year colonoscopy and was diagnosed with diverticulitis and was put on a 7 day regiment of Cipro and flagyl (sp). Two days after taking Cipro I felt like I had been hit by a truck. It took 2-1/2 months to come up with a diagnosis of PMR. The symptoms have certainly eased, especially being able to get out of bed in the morning, but I still have slight shoulder pain and total fatigue. My question is how long does this fatigue last? Should it not have gone away when I started on the Prednisone? I try to exercise a little but tire so easily. Oh yes I am a 77 year old female who has been healthy and active all my life up until now. Your input would be appreciated.

Hello Chris @ncgal, Welcome to Mayo Clinic Connect. You certainly have had a lot on your plate and adding PMR to that is a double whammy. My PMR is currently in remission but I have had two occurrences and was started on 20 mg prednisone both times and it was the magic pill - pretty much all my pain went away until I started tapering off of prednisone (which you want to do when the pain/inflammation is controlled). The first time it took me almost 3 years to taper off with the last few months going back and forth between 1 mg and 1/2 mg until I was finally able to stop taking it with minimum aches and pain. The second time around came 6 years later and took me 1-1/2 years to taper off with similar tapering. You are right about the first time feeling like you were hit by a truck.

Since you have only recently been diagnosed with PMR and just started prednisone, it might be worth calling your rheumatologist or doctor to see if the dosage should be adjusted upward if your pain is too much. Fatigue can be a problem.
Another thing that did help me was a lifestyle change with my eating habits. I still have my days but try to avoid certain foods and the big one sugar. You might find these articles helpful.

What to eat if you have polymyalgia rheumatica: https://www.medicalnewstoday.com/articles/321683

3 Strategies for Coping with Polymyalgia Rheumatica (PMR):
-- https://www.arthritis-health.com/blog/3-strategies-coping-polymyalgia-rheumatica-pmr

Peripheral Neuropathy Nutrition: https://www.foundationforpn.org/living-well/lifestyle/nutrition/

Chris are you able to sleep well?

John, thanks for your reply. My goodness, you certainly have been at this a long time. I'm glad you are doing better now.

I have never had a problem sleeping, thank goodness. Only difference is that I now sleep totally on my back as I can't roll over or sleep on my side due to the shoulder and knee pain. The rheumatologist will do a virtual telephone appointment with me after I have been on the Prednisone for two weeks. He suggested that at that time if my pain had diminished he would wean me off it. From all I am hearing and reading that sounds a little premature.

I know I must start eating the correct foods but I still have a lack of appetite and am still losing weight. I have lost a total of 60 lbs since my cancer diagnosis. I have looked at the web sites you posted, thank you. I will stock up on the "good" foods as soon as I feel confident enough to send my adult son to the store for me. Don't want him coming down with the virus at least for these next two apex weeks.

Stay safe.

Hi Chris, sorry to hear of your difficulties. I am similar age to yourself and also had rapid, overnight actually, onset of PMR. I am wondering if shock plays a part in this. Your colonosopy and the medication in your case, and in my case spending a couple of days with my ex husband and finding he had extreme paranoia all of a sudden living in fear of intruders, etc. Plays with your mind for sure. Anyhow I rapidly got onto prednisone at 15 mg a day and 16 months later got myself down to 2 and a half but in view of this pandemic cutting down to one one day, one and a half the next, for sake of immune system. Just holding the stiffness at bay. You ask about fatigue. Its a funny thing, comes and goes. Mine is more just sometimes my eyes shut and I drift off in company, or wherever. Kids just put it down to old age lol.It will last a day, then ok for a week perhaps. Its stayed the same from before diagnosis til now on very small amount of prednisone. Take Care in these difficult times.

Thanks for the reply heretaunga1947. I think you might be right about the shock to the system. My doctors did think that the Cipro I was given for the diverticulitis was a springboard for the PMR, but who knows for sure. It took 3 months for me to get a diagnosis, although for part of that time I just thought it was old age and the remnants of my breast cancer treatments. I've only been on 10 mg Prednisone for 8 days now, so am fairly new to this. It has helped a lot, but still have a small amount of pain in my shoulders, but it's bearable. I 'm still trying to get my head around the fact that this is a long term deal. Sorry about your ex. I can kind of relate as my husband has PTSD from being in Vietnam.

Hi ncg. 10 mg a day seems relatively low for a starting point from what I have read of other people's experiences.Glad it has helped a lot. I started on 15 mg which took away all symptoms and I could get out of bed, as you mentioned. My g.p. has more or less left it to me to get down to a level of stiffness that I find bearable. Now with this pandemic thing a lot of people are trying even harder to cut right back, but who knows how much the prednisonel affects our immune systems. Perhaps if we generally don't get many colds etc. its not all that vital. I also got some information at the start that we should have a supply of prednisone in case we have a flare up, which I suppose that means symptoms worsening. Also I was getting new glasses at the time and the optometrist pointed out to be wary of head aches because in some cases in develops after PMR and can lead to blindness so to take it very seriously. Sorry can't remember the name...arterial something. I am sorry it has been difficult for you and your husband after his service in Vietnam. I have a vivid memory of waiting to return home from Sydney airport in the lounge, after a holiday in Australia, and seeing a huge column of young men, not in uniform but clearly American soldiers, marching in two by two and out on the tarmac. The line went on for several minutes. They must have been returning to the war zone after r. and r. and there was something so sad watching them. Looking ahead but very subdued. I had never seen anything as close up as that and never did again. Anyhow hope you have a peaceful Easter, and the PMR behaves itself.

Question about my first major flare up. First my background: My name is Richard and I am a 60 year old fit male who was diagnosed July 2019 and had immediate results with Prednisone. My symptoms had included pain and stiffness in hips, buttocks, alternating shoulders and eventually hands. I could barely put on my socks and sleep was so effected and pain so intense, I showed up at emergency one morning where an intern did the proper blood tests.

My prednisone went from 20mg per day down to 9 mg by January with a plan to reduce by 1mg per month. I am now at 6mg however I started having stiff and sore hands in February/March. Hands would swell up and become quite stiff especially overnight and then loosen up some during the day. This would alternate between hands with 2/3 days and then switch over to the other hand. On my right, my wrist is also affected.

Approximately 10 days ago, My hands started to be affected more aggressively with a severe crippling and stiffness and pain of my left and alternating to my right with similar pain.

Two nights ago I added 5 mg to my regular 6mg and same last night. It had alleviated the worst of the pain and say 50-70 of the stiffness.
I would like to return to my daily 6mg.

I had contemplated just going back to 7mg per day however the pain and crippling was bad enough to warrant something more immediate.

Did I do it correctly? Would you recommend I go back to my 6mg ASAP.

I really would like to reduce my intake of prednisone.