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

I'm very sorry to hear that you've received this adverse diagnosis and hope you achieve remission soon. Please keep us informed of your journey. All the best to you and your family.

I would like to hear from others about their experiences with side effects of Prednisone - what dose were they using, how long did they have been taking it, what side effects, if any, have they experienced. I am terrified of Prednisone but can't endure the pain without it. "Between a rock and a hard place"! Thanks to everyone for sharing their knowledge, experience, fears and frustrations.

I do not want to live with the disability that PMR causes. I have the side effects that prednisone causes. I am 77 years old and want to live an acceptable quality of life. Prednisone enables that. I have changed my diet to low sugar and carbs. I drink lots of water and lowered my caffeine. I take Omeprazole before taking prednisone. I take calcium and D3 for my bones and I take magnesium at bedtime. Without prednisone I would be a depressed cripple.

Since I have Crohn's (45yrs) and PMR I have had plenty of pred. And when you need it only it will help. I have found ways to cope with some of the side effects. At higher doses, the restless legs are a real bummer. I use elastic bands to excercise my legs until they are really tired. Then I can rest. As for the moon face, well, I'm glad for the masks we have been wearing. My optothamologist has been doing handsprings trying to keep sight in my right eye. Fat deposits, yup, I've got a few. I have to convince new docs that it isn't my thyroid. (Labs say not.) I'm convinced that the recent brush with breast cancer is because the pred told my body to ignore abnormal cells. (Found it early thanks to routein screenings so don't put yours off.) So does prednisone complicate your life? You bet but it is better than the alternative.

My journey with PMR began shortly after my 65th birthday and my 5th haircut. I shouldn’t think that either of these was traumatic but I was under a lot of stress and my diet was mostly carbs and sugar. I woke up one morning in mid-June and the pain I felt in my thighs and shoulders was frightening. As the days went on, it became more difficult to function. I made an appointment with my Primary Dr for July 11. He did a complete blood panel that came back with elevated ESR. He did not do labs for C-reactor, so all I was going by was the ESR. He put me on a 9 day course of Prednisone, 40mg for 3 days, 20mg for 3 days, 10mg for 3 days, then cold turkey. I went back on Aug 11 for more bloodwork and the ESR number had quadrupled and the C-reactor was off the charts high. He recommended that I see a Rheumatologist for future treatment.
At the beginning, after the initial 9 days of Prednisone, I was adamant that I never wanted to take that again. It was awful on my stomach, on my sleep, on my being uncomfortable and sweaty. I knew instinctively that I needed to do as much research as possible. When I mentioned to my Dr after the first blood test, whether I might have PMR he said I was to young and nothing else would indicate that I had it. He followed up with chest X-ray and another blood panel. That’s when he handed me off to a rheumatologist. First visit with rheumatologist was short and sweet. Either I take Prednisone or I could cause irreparable damage to myself. That didn’t sound very good so I started on 15 mg per day for one month. More blood work. Numbers came down drastically but still out of range. Second month and the taper has begun. 12.5 per day and this is manageable. I sweat like a pig at night. I have terrible insomnia. My hair is coming out. I am achy at times. I unimaginably have eliminated sugar from my diet. I am on a semi-Keto diet.
I can move now without the excruciating pain I felt back in June/July. Life is good and I am upbeat. I have PMR, I have Scottish ancestry, and my name is Annie. Hello in here.

Hi @christi48, I started on 40 mg of prednisone in late May, 2021 for Giiant Cell Arteritis, tapering down by 5 mg every two weeks until the taper became more gradual. I am currently down to .5mg every other day which will end this week. I had a moon face and rosy cheeks from the prednisone, but I looked healthier because GCA and PMR made me anorexic and I lost about 15 lbs. The prednisone stimulated my appetite, and I returned to my former eating habits so didn't have problems with blood sugar, diabetes, etc. There was some thinning of my skin. My energy increased, and I was extremely talkative, but unable to sleep more than a couple of hours a night without "startling" awake. It was most helpful to get up, read for a couple of hours and drink lemon balm and/ or valerian tea (don't take melatonin, it stimulates the immune system). For a while, on the higher dosage, I felt like a hepped up zombie. As the dosage decreased, I was able to sleep better.
I was diagnosed with osteoporosis two months after starting prdnisone. I don't know if it would work that fast to thin the bones. The year I spent on the couch with PMR, unable to move, probably did not help.
My mother-in-law was diagnosed with GCA in her 80s. She took prednisone, reluctantly. She also had osteoporosis, but lived to be nearly 100 and had a full life up to the end.
Unfortunately, prednisone is not a perfect drug, but in the case of GCA and PMR, it reduces pain and can prevent more serious symptoms of GCA. The key is to have a good physician who monitors symptoms and decreases the dosage gradually. I hope this helps.

Hi Christi,
I'm just about to celebrate my 6th anniversary of being diagnosed with PMR, although I suffered with it 4 months prior to being finally correctly diagnosed by a physicians assistant. It was a relief to finally put a name to the devil that had suddenly crippled a man of 61 who worked a physical job full time. The initial treatment with prednisone was great with the pain virtually vanishing overnight but hell began at the hands of a rheumy who was determined that I had to be off prednisone inside of 2 years. I had 2 huge flare ups and had to move up to 30 mg of pred (I had started at 20). I learned quickly that there are rheumies who are good and others who are almost clueless about PMR and long term prednisone use. After joining another forum, healthunlocked.com, I educated myself and became better equipped to understand and work with prednisone in my life. My biggest hurdle was getting below 10 mg but after a number of flares I have taken the very slow route, reducing 1/2 mg every 7 weeks. It's been a long trip but I have kept the PMR "asleep" while still working full time. Keeping the inflammation under control is what it's all about. That's a real dance, believe me, but you learn to pay attention to your body and watch for what might be the beginning of a flare that tells you the dose you're taking is a little too low. I'm currently at 3.5 mg after moving up from 2.5 when I started feeling more pain again. I've been fortunate not to have weight gain issues. At the beginning I lost close to 40 pounds in 5 months mainly due to the pain which totally killed my appetite. I have had sleep issues off and on but do the best I can. Skin is paper thin now and I carry my supply of band aids in case i bump something too hard. I have neuropathy of my feet but thankfully not severe, mainly noticable when I have the shoes off. Worst side effect for me has been muscle wasting. I have a good relationship with my 4th rheumy who agrees with my slow reduction of prednisone. He feels that if I had to be at 3 mg of prednisone for the rest of my life it's no big deal, as such a low dose has virtually no side effects. I agree.
After all, it's about quality of life, and without prednisone I would have been very disabled. After 6 years I'm having a challenge getting the adrenal glands to wake up again after their hibernation but it'll get there. I'm thankful for sites like this and Healthunlocked so one can learn and compare notes with others who have PMR and understand living with with it. Best of everything to you and everyone here.

Thank you so much for taking the time to educate me. I'm glad you are gradually getting better and hope things will continue to improve for you. Best wishes.

It was very helpful - thank you. I didn't know about melatonin... I agree that Prednisone is not perfect - far from it - but I think about my life without it, which would be intolerable, so I also have to be grateful. I, too, have osteoporosis (advanced), so that scares me but if nothing else, maybe I am buying some quality of life before my skeleton crumbles... I feel fortunate that I am still able to work out and do weight-bearing exercises and try every day to remind myself that lots of people have worse problems than mine. Thank you so much for your time and wisdom. I am so happy I found this group of wonderful, supportive, knowledgeable people.

I totally understand your feelings. Thank you for sharing your story. My very best wishes to you.