newly diagnosed

Posted by anncoco57 @anncoco57, Aug 29 7:53am

hi

i have been diagnosed with PMR about 4 weeks ago and on 15mg of sterioids. i hate being on them and to be truthful not really working especially in the mornings.

any suggestions

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@anncoco57

It’s my third visit to the doctor and she has now referred me to the rheumatologist but appointment not till 19th October. My private health insurance says they won’t cover it so on the nhs

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You are in the right place! Most of us here can relate to PMR and insurance issues. Maybe not so much with the NHS. I would guess the doctors there are basically the same although the health care systems differ.

The PMR guidelines are issued jointly by the European League Against Rheumatism (EULAR) and the American College of Rheumatology (ACR).

I guess the Italian Society of Rheumatology mostly agrees with some ideas of their own.

We are all seeking better ideas!

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@emaureen

15mg didn't work for me, either. It was awful. I have osteoporosis. With the terrible side effects of Prednisone, I already felt that I'd made a deal with the Devil... only he didn't follow through with his side of the bargain. It was agonizing to put my elbows up and back, which is something you do a LOT (while getting dressed, for instance) - near-impossible, felt as though my arms were being forced against the way they were built. A week later the doctor bumped me up to 25mg. Pain was slightly less the next day, but it still took a few days before there was real effect. So much for the stories of instant relief.

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@emaureen
So sorry you did not get the pain relief on your first dosing of prednisone. This just shows how everyone is different.
However, if the right dose is given there is usually an immediate effect with most patients. Sorry that yours took a little longer ☹️
Are you being treated for your osteoporosis? I’m receiving a yearly infusion of Reclast to counteract the prednisone I’ve taken off and on for years.
Hope your journey gets better from here…

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@jlo2252

@emaureen
So sorry you did not get the pain relief on your first dosing of prednisone. This just shows how everyone is different.
However, if the right dose is given there is usually an immediate effect with most patients. Sorry that yours took a little longer ☹️
Are you being treated for your osteoporosis? I’m receiving a yearly infusion of Reclast to counteract the prednisone I’ve taken off and on for years.
Hope your journey gets better from here…

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I finished taking Prednisone in early July after a slow taper of .25mg toward the end. At that point the orthopedist said I was told to take a vacation from Alendronate for my osteoporosis for a year, with another bone density scan to be taken at that point; it had been 14 years, with a six-month "vacation" some years ago.

Wouldn't say that I'm back to where I was pre-PMR (some aches and pains that I'm sure weren't there before), but at least I'm fully functional. I'm also 80 and relatively unscathed up to this point. Have to say that it is worrisome when any arm pain hangs around since I'm always afraid that the PMR might be returning, but at least I have plenty of Prednisone at the back of the cupboard. When you have been dividing pills into eight itty bitty pieces, you tend to have leftovers.

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@emaureen
You certainly seem to be doing great for an 80 year old!
Better than me, I’m 74! 😂
I’m still taking 7.5 mg of prednisone , tapered down to this about 3 months ago , doctor will be putting me on Actemra soon!
I couldn’t take the oral fosamax for my osteoporosis, I just recently took my 2nd IV infusion of Reclast.
Your arm pain might be from osteoarthritis—something nearly all of us get at our age—just “wear and tear” of aging🥲
Best wishes on your health journey…

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The goal of steroids (specifically, Prednisone) for Polymyalgia is to cut the pain, and then for you to be weaned off slow enough that the pain and swelling stays away. In my case, I could not continue on the Prednisone, it caused so much weight gain and then uncontrollable glaucoma also, it became too much too risky. But that took some time to find out. So, I had to go off it without a new plan. Also, without a Rheumatologist. The other's here appear to have Rheumatologists. In the end, I ended up finding out what was triggering it. That turned out to be an allergy to cold. I lived in Alaska, but wasn't born there. Perhaps, if you can possibly find out what triggered it, you might be able to eliminate that, instead.

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Hi Ann,

Mornings are the most pain, afternoons and evenings much less pain. Have no idea why that is, more movement I suppose?? Best to you.
Karo

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@karo89135

Hi Ann,

Mornings are the most pain, afternoons and evenings much less pain. Have no idea why that is, more movement I suppose?? Best to you.
Karo

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Putting a bra on ( sorry guys) is a challange

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Yes it is a challenge, and t-shirts (my wardrobe staple!)
too! 😂😂

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@anncoco57

Putting a bra on ( sorry guys) is a challange

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Lol, yes! Front fastening or turn it around. I can't cut my french toast or get the cap off the toothpaste. Ah, the golden years. I took pride in how I looked, now it's just getting by with least amount of pain. We find a way.
Karo

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@thenazareneshul

The goal of steroids (specifically, Prednisone) for Polymyalgia is to cut the pain, and then for you to be weaned off slow enough that the pain and swelling stays away. In my case, I could not continue on the Prednisone, it caused so much weight gain and then uncontrollable glaucoma also, it became too much too risky. But that took some time to find out. So, I had to go off it without a new plan. Also, without a Rheumatologist. The other's here appear to have Rheumatologists. In the end, I ended up finding out what was triggering it. That turned out to be an allergy to cold. I lived in Alaska, but wasn't born there. Perhaps, if you can possibly find out what triggered it, you might be able to eliminate that, instead.

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Prednisone is for cancelling Inflammation. Inflammation is very hard on our body as well as certain organs, it is not for pain. Yes, it does cause weight gain but as you titrate down that can be controlled. Yes, it is predisposed to Glaucoma, I have the beginning stages of it and my eye surgeon has me on drops to control the eye pressure. It also will be titrated down as I wean off of the prednisone. I am also on injections of Kevzara for my PMR. Good luck!

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