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

Sure hope you are doing better . Glad you are down with the medicine . Raising blood sugar is one of the side effects that isn t good . I was blessed s d didn t jace this happen.

Just diagnosed. Sick 4 months, March 13 to be exact. I am 76. Rheumatologist confirmed with SED rate of 48 and typical pains and where they are. I am on day 5 of 10 mg prednisone. I had a Dexascan to assess baseline condition of my bones to follow any changes and concerns on osteoporosis. My question. I was 80% improved after 1st prednisone does...and can do things I haven't in months, like wash up some dishes, reach into fridge, put away some groceries, make a salad. Amazing. What is worrying me is that I had to lay on the very hard surface of the Dexa machine for 15 minutes yesterday. I CANNOT lay on my back, period but had to. And still! All evening the usual muscles of back and shoulders and next a mess. I took Tylenol to no avail. Can just this 15 minutes have escalated my pain? I wonder if I should take more (with MD permission of course) or just see what happens. Thank you! Sharon S

Not sure how to actually JOIN site...I read directions but there is no JOIN icon on top right like the directions say there is! Sharon S

Sharon S. Makes sense to contact your doctor, I think. Injuries can bring on flares, so maybe that's what happened. He may tell you to increase the prednisone for a bit to see if it helps. It's amazing how the pain just goes with the prednisone and we're able to do things. I hope your back gets better soon. I'm also wondering if any accommodations or modifications are possible for people with sensitive backs to get dexascans. TSC

This is the worst disease ever...After 9 months of prednisone, and still on, also a monthly infusion for the rest of my life.....thank GOD for my doctors and supportive family anyone that needs help please let me know

Thanks TSC. I think there definitely needs to be a rubber pad or something on the Dexacan machine. It was awful. Next day tho I was not any worse for it. Just that afternoon and evening was challenging. I am sure the 10 mg wears off by 6 PM after 12 hours so the evening is not as comfortable but not as bad as before the steroids. I talk with my doctor on telemedicine Tuesday Am. Also, someone here gave me a grate link about diabetes and PMR and steroids and intermittent fasting. A video by an MD. It was actually quite good and I began the 16:8 plan since waiting till about 11;30 AM to eat helps as the sugars rise alot even without any food! So this mitigates it some. And, by 6 PM the affect of the steroid on the sugars is MUCH less. Still requiring short acting insulin to cover carbs...so, this MAy work. And, I cut my carbs to between 57-75. I think it will work. We will see. Thanks for the good suggestions. Best, Sharon

Hello @lisabrookside387, Welcome to Connect. I suppose there are folks with other conditions that may have a difference of opinion but for me PMR was also the disease from you know where. I saw in your second post that you are now down to 7mg prednisone from a starting dosage of 60mg. You mentioned you are also on a monthly infusion for the rest of your life and other complications. I have had two occurrences of PMR both started at 20mg prednisone daily. The first time it took me 3-1/2 years to taper off, the second time took me about a year and half to taper off.

60mg seems like a really high dosage for PMR. Are you able to share a little more about your other complications or conditions you mentioned earlier?

Yes, I'm very willing to share. After my biopsies for some to this day unknown reason, I couldn't walk or get out of a chair,,,
It was brutal for 4 months, and I had to re home my dog. Every possible test was done, and no one can figure how I went from walking to non walking. In April I started the most amazing physical therapy....Now I can drive ! and generally speaking, get around quite well.
As for the 60 mgs - I was screaming in pain....only morphine could help. I would guess that between December and February I was hospitalized about 10 times. The prednisone made my blood pressure go crazy. I'm very lucky to be alive. I will be off of the prednisone by October, (God willing) and then, the monthly infusions. Oh, another side effect of all of that cortisone is that my teeth started to deteriorate! Today I got the top six capped, and next month the bottom six. pure nightmare!

Hi Sharon, Glad to hear that you felt better the next day. When you got for your next Dexa-Scan, you can request a reasonable accommodation under the Americans with Disabilities Act in advance, which would be asking for a pad or other soft material to prevent back pain. Best to put a request like that in writing. If you feel like it, you could even lay the groundwork now, by calling or writing a letter, explain what you went through and ask what they can do to prevent that in the future. All the best, Teri

Great idea. I will do that!