1. < Polymyalgia Rheumatica (PMR)

treatment of PMR

Posted by eby @eby, Jun 22, 2024

Has anyone ever tried to treat PMR without steroids'? Are there any drugs with less side affects that work?
I have just been diagnosed ( 3 weeks in pain ) and am not anxious to start steroids'

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

eby | @eby | Jun 25, 2024

Thanks everyone for the replies .

REPLY
lashley75 | @lashley75 | Jun 25, 2024
In reply to @54pontiac "I was put on Meloxicam before I was diagnosed with PMR. In preparation to taking prednisone..." + (show)
@54pontiac

I was put on Meloxicam before I was diagnosed with PMR. In preparation to taking prednisone after diagnosis I quit taking the Meloxicam and was surprised at how much it had been helping with the pain. But the prednisone took me from nonfunctional to functional with few side effects. I do not regret it at all. Everyone needs to decide for themselves.

Jump to this post

What are ur side effects?

I had a bone density test and my % of falling and breaking a bone went up 50%.

Dizzy all the time - affected my eyesight. On eyes now for the rest of my life.

However I could function well…right now suffering badly as I took myself off prednisone . Trying to figure it all out.

Damned if you do- damned if you don’t. Sad.

REPLY
3 replies
lashley75 | @lashley75 | Jun 25, 2024
In reply to @seniormed "If you had your baseline labs completed and the diagnosis is probable PMR then an appropriate..." + (show)
@seniormed

If you had your baseline labs completed and the diagnosis is probable PMR then an appropriate dose
of prednisone is helpful in firming up the diagnosis.
The response to therapy is often within days.
If you don’t have any medical or metabolic reasons to
avoid treatment the side effects can be manageable.
Exercise as possible and vitamin D for osteoporosis
prevention . Have a DexaScan early on .Diet helps both the inflammation and BP and glucose. I had a cardiac risk evaluation and eye exam.
Turmeric, vitamin D, statins and stevia are in my diet
after remission. Melatonin is is proving to have anti-
inflammatory action as well.
Communication with your doctors is the most helpful
way to cope with any side effects.

Jump to this post

Took myself off Prednisone….struggling to figure out what is best. Taking Tylenol and ibuprofen everyday for the pain. Probably not the best, but still working on it.

Warning ***
Read the back of your Melatonin bottle….lack of sleep is wearing me out….but it states ..DO NOT TAKE IF YOU HAVE AN AUTOIMMUNE DISEASE. I HAVE “PMR”

REPLY
eby | @eby | Jun 25, 2024

I thought PMR was an Autoimmune disease...?

REPLY
nancy53 | @nancy53 | Jun 26, 2024
In reply to @lashley75 "What are ur side effects? I had a bone density test and my % of falling..." + (show)
@lashley75

What are ur side effects?

I had a bone density test and my % of falling and breaking a bone went up 50%.

Dizzy all the time - affected my eyesight. On eyes now for the rest of my life.

However I could function well…right now suffering badly as I took myself off prednisone . Trying to figure it all out.

Damned if you do- damned if you don’t. Sad.

Jump to this post

I hope you tapered slowly, your adrenal glands become dependent on Prednisone for cortisol production. It's dangerous to take yourself off the medicine without supervision.

Please consult your doctor, there is no need to be "suffering badly", as there are alternatives to Prednisone.

Be well.

REPLY
lashley75 | @lashley75 | Jun 26, 2024

Of course I did consult a doctor…..it took me 6 weeks to tapper off.

REPLY
lashley75 | @lashley75 | Jun 26, 2024
In reply to @lashley75 "What are ur side effects? I had a bone density test and my % of falling..." + (show)
@lashley75

What are ur side effects?

I had a bone density test and my % of falling and breaking a bone went up 50%.

Dizzy all the time - affected my eyesight. On eyes now for the rest of my life.

However I could function well…right now suffering badly as I took myself off prednisone . Trying to figure it all out.

Damned if you do- damned if you don’t. Sad.

Jump to this post

Weight gain badly, dizziness, effected my eyes now on eyedrops for the rest of my life, of course bones, noticed fully out more than usual n fingernails constantly split down the middle.

However. I could an almost normal life.

Trying my options.

REPLY
54pontiac | @54pontiac | Jun 26, 2024
In reply to @lashley75 "What are ur side effects? I had a bone density test and my % of falling..." + (show)
@lashley75

What are ur side effects?

I had a bone density test and my % of falling and breaking a bone went up 50%.

Dizzy all the time - affected my eyesight. On eyes now for the rest of my life.

However I could function well…right now suffering badly as I took myself off prednisone . Trying to figure it all out.

Damned if you do- damned if you don’t. Sad.

Jump to this post

I would take the bone density numbers with a grain of salt. Even more so a percentage probability of breaking a bone. My rheumatologist said trying to compare data from two different machines are useless. Numbers on a page.

REPLY
lashley75 | @lashley75 | Jun 26, 2024

Really, yikes, for now I will believe in the test.

REPLY
dianagcurran | @dianagcurran | Mar 26 8:09am
In reply to @dadcue ""RA has been around a long time." "Corticosteroids appear to be all that works if the..." + (show)
@dadcue

"RA has been around a long time."

"Corticosteroids appear to be all that works if the PMR becomes advanced."
----------------------------------------------
I think the narrative that "prednisone is the only option" gets perpetuated because there hasn't been the research done for PMR like it has been done for RA. Promoting the fast response to prednisone as a "miracle" while the long term side effects of prednisone are downplayed or "easy to manage" doesn't promote the pressing need for more research into PMR. For some reason, the lessons learned from RA aren't applied to PMR.

My PMR became refractory. I didn't ever think prednisone worked that well based on the number of relapses I had. I believe the long term use of prednisone actually perpetuates PMR. I think the immune system needs to be reset quickly and people need to taper off Prednisone as soon as possible. A sustained remission of PMR needs to happen sooner rather than later.

Prednisone worked well for uveitis and some other problems I had before PMR was diagnosed. A 60 mg dose for uveitis followed by a fast taper to achieve remission didn't cause many problems relative to the long term use of prednisone for PMR.

Jump to this post

5 years ago I developed an illness that left me very debilitated with low grade fever, crushing fatigue and an inability to get out of my bed or walk without pain. I was given Prednisone and it gave me osteoporosis and I can no longer use that drug for my PMR pain. I weaned off after 8 months and the PMR, Lymes, RA whatever it was did not return until last week. I was not clearly diagnosed because C Reactive protein and Sed rates were elevated but not over the mark where I definitely had PMR or serum negative RA. I am going to a new Rheumatologist this morning. I had to take a Meloxicam 20 minutes ago because the pain is unbearable.

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.