I woke up the 1st weekend in July 2017 to start my vacation & noticed my I had no grip in my hands, the joints in my arms, shoulders & neck hurt especially if applying pressure on them. All the muscles were stiff, even in my legs & especially my calf’s. My Dr. put me on a rd. Of prednisone which helped a lot,but after the script out the pain returned so he ran. FEW blood tests & found my white blood cell count was elevated (15000 instead of the normal 12 to 13000). He set me up to see a rheumatologist who diagnosed me w/ PMR 4 months later. He put me on on prescription of 5 mg prednisone 2 a day & when that ran out he cut me to 1 a day. In the meantime my white blood cell count remained elevated @ the same level so the rheumatologist had me go to the cancer center & get checked for leukemia & lymphoma which came back negative TG! But having PMR has altered my lifestyle big time & it robs me of sleep every night because I can’t lay on either side no more than 15 min or so & the pain in my shoulder, arm & hand becomes unbearable & when I roll over the same thing, EXCEPT for when I’m on my back & I can’t sleep on my back boo boo.... I’m also a bridge inspector & have played the drums since I was 6 (52 yrs). I rarely have good days when I can play when I was playing multiple times a week back b4 July & it’s made performing certain duties @ work very difficult. I’ve researched PMR like crazy & prednisone thus far is the only thing you can take that relives the inflammation thus relieving the pain. I PRAY that everyone here w/ be in the 80% that are cured. God bless you ALL.... one thing that I also discovered is that the pain from PMR is due to the white blood cells attacking the lining of your joints. Scientists don’t know what is causing them to attack the body other than an infection that has possibly penetrated into the lining. The cancer Dr. I saw said my white blood cell count @ 15000 was very slight because for me to have say Leukemia it would be in the 70000 range he also said that he had looked into PMR & with the white blood cells attacking the joint lining it would definitely cause the count to elevate. Just some FYI.
God Bless everyone....
Written by
LarryLeek
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Hmmmm...I thought there was a duplicate of this post in which many members had offerred advice; however, I’m not finding it so I will reply here.
Larry, I’m very sorry that you find yourself fighting this illness. And I thank you for your prayers that you posted hoping that we all are healed from it. I sincerely hope your prayers are answered.
Regarding ‘waging war’ - certainly do (as long as it is doing research and learning about your illness.) Nothing bad can come out of education. In fact, that will help you fight this — and allow you to release some of that fear and anger you now have.
You come across loud and clear how you feel about Prednisone. That was also my first reaction. ‘NOOOO!’’ Now I say Pred is my friend. It saves my sight (diagnosed with GCA May 2017),. Yes, it’s a powerful drug, but it isn’t as frightening as I think you believe it is. Yes, it has side effects, but Mayo Clinic has recently determined that they aren’t as bad as originally thought. And as Prednisone has been around for many years, we have ways to work with Pred so that we aren’t hit so hard with them. Ex: low carb/no sugar diet will help with weight gain, curb cravings, and help keep diabetes away. (I’ve removed diabetes from my list of illnesses since being on Pred by following this way of eating.) HeronNS will give you advice on bone health. She has increaed her bone health while on Pred through diet and exercize. LadyDorset and PMRpro, along with the other Aunties/experts are here to offer their expert advice, along with the members of this community. Both ladies have developed taporing schedules that help us lower our dosage without flares. You’ve been blessed to have found this place. You may not know it yet, but you’ll soon realize it, I think. Lots of support and evidenced-based medical advice to be found here.
In your replies to member’s posts to you, I noticed your fear of being on 15mg of Pred for 5-6 years. I sincerely doubt that will be the case. That is a starting dose, not an ‘everyday for the life of the illlness’ dose. (I started at 40mg end if May, 2017 and am currently at 12.5mg as an example.) Read through this and you’ll see a suggested taporing schedule.
Also, as previosly suggested, start reading past posts and references offerred here. Your learning curve is steep but made easier by all if the information found here. I hope by doing so, some of your fears will go away and you can find some acceptance. Stress feeds PMR and GCA so the sooner you can ‘become one with it’, the better for you.
Sorry, I’m typing this from iPad and haven't figured out how to move off this page without losing it otherwise I’d find the link and post the Mayo report on side effects. PMRpro will have the link (I have it at work and can post it tomorrow if not yet posted.)
Regarding sleep- yep, problematic. But it does get better.
Ok, it’s 12:14 am and I think I can find sleep again, having slept from 7:00pm - 10:00pm (My way of dealing with sleep is grab it when i can and tonight at 7:00 I could. You’ll learn that a major ‘rule’ of these illnesses is ‘listen to your body and adjust to what it tells you it needs’.)
Best wishes and welcome to our family.
Sorry again for posting on this - I could not find the other thread.
Yes. I don’t know why I didn’t find it last night. A blip in the program? A blip in me? My guess is a blip in me. I logged back in a few minutes after I posted this and there it was. I thought ‘What the heck? Oh well, I’ll just cut and paste it over to the one being used’ and then realized that I don’t know how to do that on my iPad. I do a great copy/paste when capturing websites, but not large body of text. Thought I’d do it when I get to work at the computer.
You’re welcome. I’ll pass along the first thing I learned here: Don’t take your calcium and Pred at the same time. (They don’t play well tigether.). I take my Pred first thing in the morning with breakfast, wait 3 hours and then start taking the rest of my meds after thst.
Oh my gosh, Annie! Thank you! You know when something happens to you that produces that feeling of a warm marshmallow travelling in your body? Your message to me just produced that feeling. I'm truly humbled! Thank you!!!!
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