PMRGCAuk
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Update- No change

So I said I would keep you all updated. I am not almost 3 months into my pain which is yet to be diagnosed. I will be seeing my doctor next week. Right now, not much has changed. Mostly it is my legs. I can hardly walk most of the day and I have not had one "good" day in over a month. I am taking Advil about three times a week to try to manage the pain although I don't really want to be relying on Advil. I also have a TENS unit which doesn't really help but I use it anyway. When the Advil wears off the pain is back immediately. Also, my arms and shoulders are effected by not as much as my legs. I don't know if my doctor will agree to try the Prednisone without the blood markers but we will see. He will redo the blood tests. I doubt there will be any change. I will continue to check in. Again, thank you all so much for your insights and support.

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Hi Virginia, are you saying that Advil helps reduce the pain? it is just that PMR does not really respond to any painkillers, it seems steroids are the only answer. It would be nice if your doctor would allow you a week of prednisone as a trial. You may be one of the twenty per cent whose inflammation blood markers do not rise. Your doctor should be aware of this.

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Hi piglette: That is generally true but iboprofen did give me some relief. Not nearly as much as the miracle prednisone, but some. I talked it over with my Rheumatologist and she told me that a few patients with PMR can not take prednisone for medical reasons and she’s heard of a few of those patients getting by with iboprofen.

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I did find before diagnosis that taking an aspirin for headache would give me some slight relief. I thought my osteoarthritis was getting worse and I didn't want to take aspirin all the time. Apart from being bad for the stomach it, like other NSAIDS, interferes with cartilage regeneration. My doctor at the time prescribed celebrex, but when I looked it up I couldn't understand why this med was still on the market and didn't fill the prescription. After about fourteen months I was finally given a pred trial by a new doctor and within about two and a half days all my pain was gone!

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I am going on the 28th and I will be begging for the pred. BUT, some are saying that if it is responding to Advil it cannot be PMR?! Trying to get more info on this but I am still convinced it is PMR. Stopped taking the Advil as I do not want to be on any NAIDS. My doc has also mentioned celebrex. Not going to do it.

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No, I didn't say it COULDN'T be PMR, I said it may not be. There are also what I call add-ons - and they may respond some to Advil. I suppose what I'm saying is don't go with a fixed idea of what you have, it may not be, and even if you respond to pred - that isn't 100% confirmation it is PMR. Other things will respond to pred too.

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Got it!! Really trying to keep opened but honestly, three months of constant pain and immobility is not fun.

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No - tell me about it!!!! But after 5 years you get used to it a bit...

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Hugs!!

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I recently changed health networks right about the time I was diagnosed. The first rheumatologist said that there is "zero chance you have PMR unless your Sed Rate is up in the 40s". Both my Sed Rate and C-Reactive measured in the normal range, but were clearly raising fast and would soon be elevated. Because I also tested with a mild positive for RA (anti-CCP), he diagnosed me with RA, even though I don't have any classic symptoms of RA (hands & feet).

The second rheumy ignored the blood tests and went with a PMR diagnosis, because all my symptoms are typical of PMR and I responded well to low dose Pred. The Pred was prescribed as a "diagnostic dose." If you have the classic symptoms (hip and shoulder girdles, morning stiffness, etc), I would think the obvious next step would be a trial low dose of Prednisone.

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"The first rheumatologist said that there is "zero chance you have PMR unless your Sed Rate is up in the 40s""

Isn't it strange how some rheumies think they know more than the world experts? Up to 20% of patients with PMR have normal range ESR/CRP. Same with GCA if it comes to that. My ESR did rise during a particularly bad flare 6 years ago - but in isolation looked fine as it hovered around 18 for about a month. Normally it is about 4 so for me it was raised by about 400%. If someone whose ESR is usually 15 had a similar rise it would be 60+ - which they would take notice of.

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Does PMR ever respond to Advil or any NSAID's. I am responding to Advil but I am not taking it. My symptoms are classic PMR. Three solid months no change. But some say it cannot be if responding to NSAID's???

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It is very unusual for PMR to respond well to NSAIDs although they do get a mention in the guidelines. PMR isn't the disease, PMR is the name given to the symptoms caused by an underlying disease process and there are several causes, some more, some less unpleasant - there are even a couple of cancers that must be considered and ruled out. A few forms of inflammatory arthritis can present with polymyalgic symptoms - and there may be a response to moderate dose pred although usually they respond more slowly or less well. About 1 in 6 patients who are given a PMR diagnosis go on to have the diagnosis revised at some later point. What often happens is that the patient takes a while to respond to pred and then has trouble reducing the dose - that also doesn't mean it isn't PMR, but the doctor should be considering alternative at all stages if there are problems. And when a doctor decides to use higher doses of pred it really muddies the water - and may mean someone being on pred unnecessarily because it is the wrong diagnosis.

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Having discussed it with my doc, he would go with the lowest dose possible. Nothing at all showing up in the blood work so he may be looking a further testing. Not sure yet. We were both waiting for either more symptoms or a difference in the blood work. Status quo for a month with about a 10% increase in the stiffness. No good days at all.

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I have PMR. I take Advil 2 daily with food, sometimes I skip a day but the next day is awful! I don ‘t want prednisone! The Advil decrease inflammation but of course not fully! It makes it that I feel a little more flexible or “ pliable” .I take anti inflammatory like bromalain and some other supplements. I avoid some inflammatory food but I am not excessive about it! The ESR is elevated even though I the level has improve over the months. I’ve been in this condition since January 2017! I find also that on very humid days the Symptoms get worse. Right now I m having flare up actually since I am in Florida for the winter! I wish you the very best! Not an easy condition to have!

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Yes mine did. But only a little and not nearly as much as the “miracle” prednisone.

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Thanks so much!! My symptoms are classic as well. I am hoping that he will go with a low dose prednisone. Fingers crossed. I will push for it!!

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Virginia, if your doctor doesn't believe you and don't believe your doctor, then you'll have to find another one.

Theres's not a single reason valid reason to suffer so long without treatment, or to keep suffering. Useless suffering is useless. It doesn't prove anythng except your doctor doesn't know what to do and is too chicken to try anything. Time to fire him and go elsewhere.

Sorry if that's a bit frank, but there's no point to what he's having you do.

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Good_Grief is on the money! Get a new doctor today!

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Like piglette - I'm concerned that if Advil is working it is less likely to be PMR. If it is ankylosing spondylitis then that might respond to ibuprofen (Advil) - but it can also respond to pred at PMR doses.

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That is very interesting. This is what I am looking for. SO, you are saying that PMR does not respond to Advil? WOW!! Have not heard of ankylosing spondylitis? BUT my computer is going there right now.

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I also took Advil, 4 every 4 hours while awaiting my appointment (2 weeks) with a rheumi for initial diagnosis. It seemed to help a little, but that may have been only psychological! As soon as I got the prednisone (which she gave me before my blood results were even in....saying if it worked, it was very likely I had PMR, if not, no harm done). Pain was all but gone in a couple of days. I don’t understand why any Dr. wouldn’t at least let you try for a week.

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Hi I am new to this I have had pain in my should e rd and collar bone and down my legs from my hips and the bottom of my feet hurt so much I can't stand on them sometimes and they are bright red underneath.

My rheumatoid doctor has said he thinks I have Fibromyalgia and Osteoarthritis I never have any markers raised in my blood tests. Like you the pain is unbearable especially in the sides and front of my neck. My rheumatoid doctor has given me pregabalin 50mcgs twice a day which does nothing for the pain. I don't know why they can't give you the steroids, on here so many people say after a few days the pain has gone.

Good luck with seeing the doctor.

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You are right. All of what I am hearing is that PRM responds to steroids almost immediately. Not so sure about Ostioarthritis or Fibromyalgia? Seems like the most important thing is getting an accurate diagnosis. Getting the idea that this is difficult at best. Good luck with your pain. I know how frustrating and upsetting it is to be out of sorts for a long period of time. Keep pushing if you are not getting relief. More testing for the right treatment.

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PMR may respond immediately, some people need a few days. All different!

Some osteoarthritis pain will improve with pred - there is some inflammation involved. Fibromyalgia won't be touched by pred. And up to 20% of PMR patients don't have raised blood markers.

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Hi Virginia: Am I remembering correctly that you are in your 30s? Or was that someone else? If yes, that’s almost certainly part of the reason that your physician is avoiding a PMR diagnosis. Its’s rare in people under 50 and more rare under 40. But that doesn’t mean you don’t have it. I agree with most folks here that it seems odd that your physician won’t give you a trial short term dose of prednisone...but also cognizant of PMRPros concerns. Getting an accurate diagnosis for a rare disease takes a lot of time and effort of your part and is Colorado molecular for your physicians. Hang in there!

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Ha ha! “Colorado molecular” was supposed to be “complex process”

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I am 66!! Right now I feel like 86. In bed all day and unable to walk. ahhhhhhhh

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Oh wow! Then I Can’t believe your physician is letting you suffer this way without a trial course of prednisone. Actually...on second thought I can believe it because my first primary care physician did the same thing to me...had to change physicians.

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Hard to find new doctors here. Very hard.

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