I have recently had blood tests again and have a low esr. I have symptoms of pmr and discussed these with my gp. I begged her for prednisolone and she reluctantly agreed but only one week. I felt great! I was walking normally, getting out of bed for the whole day where I was bed bound a lot before, just felt so wonderful having so little pain in my hips and shoulders. My blood tests came back normal and she said she cant give me any more and is referring me to rheumatology again. The pain has come back, my hips are crippling me my shoulders are so so painful again and nothing else has worked, just the prednisolone. My orthopaedic specialist may give me one more injection in ten days, vpbut that will be the third and he said 3 is the max so I should have relief for 3 weeks, if previous injections are to go by but after that........i dont know how I can cope any more with this dreadful pain!
Hi there,
Based on what you said, I would look for a new doctor. It seems that you are not being listened to regarding your pain.
Nobody wants to be reliant on Prednisone and have all the potential side effects, but a quality of life is important.
I could not function without Prednisone, but still willing to put up with the side effects.
Good luck,
Shawn
You certainly can have normal ESR results with PMR and the fact that your symptoms responded so well to prednisolone does indicate PMR, particularly if the dose was 15 or 20 mg. What dose were you given?
I am so sorry you are in such unnecessary bpain. Please ask to see another doctor at your GP surgery and/or another rheumatologist; someone who knows more about atypical PMR.
What is your age by the way?
She said it would give me diabetes, osteoporosis etc. she doesnt seem to understand that I can barely move, my sleep is disturbed throughout the night with the hip pain and I am often in tears cos its so bad and oramorph doesnt even help! God knows when the rheumatology will be and whether they will do anything. They seem to just pass everything off as fibromyalgia and " sorry theres nothing we can do, just keep taking tramadol and co-codamol". Why?! It doesnt work! I want my old life back, ir at least some of it! I dont ask for much, just to be able to get outdoors for a walk, enjoy nt gardens, get my narrowboat back in the water! So fed up, sorry for moaning
Well i am only 46 and I know its unusual under 50 but not unheard of. I was given 15mg. I questioned pmr after all my symotoms came up with this. Also, after having the pred injections had worked, I thought the same thing, that if they worked isn't that an indicator that it could be pmr? They made such a huge difference, but doc said "no way, we would be giving you diabetes, osteoporosis, etc"
Hello shaz. You may not have pmr. I was in awful pain and one doc diagnosed pmr even though my blood tests showed I didn't have it. All the same he put me on pred. I saw a different doctor about a chest infection and she asked how I was getting on with the pred and my pmr. Having a good chat to me she was sure I did not have pmr and sent me to a consultant rheumy. He too was convinced I did not have it but the stress I had endured over the last 12 months had given me pain that was dibilitating and the stress symptoms were mimicking pmr. They were right.I came slowly off the pred and on to painkillers and now I am not stressed, not on painkillers and I am pain free. Bear with it, don't take pred if you don't have pmr. There are more downsides than up with steroids.
Yes I do understand there are lots of cons to taking steroids and I have always avoided them, but after being house bound /bed bound most days over the last 20 months and crying so much with pain, I just cant cope with it anymore. I have seriously wanted to take all of my tramadol and co-codamol at once just to be free from it all. I make sure I have lots spare too. I won't cos I know how it wouod affect my children, thanks for advice
That is sad for you. Big hugs. There is light at the end of the tunnel, Take the pred and then get plenty of exercise. When you are feeling really good then perhaps you could try to wean down. If you have done loads of exercise you will have built up your muscles and lubricated your joints and you may just find you can come down off the preds and have no pain, but you must come down very slowly. It is no good being on a week and then stopping that was so wrong of your doctor to do that and I think that is why you feel worse. Good luck and I hope you are well soon x
It certainly isn't unheard of under the age of 50, although rare. You are not that far off 50 after all. It is possible you might not have PMR but your relief from symptoms at 15 mg pred is classic and often used as an indication of PMR.
A rheumatologist should run a whole gamut of blood tests to rule out other autoimmune diseases that can similarly cause muscle aches and pains.
Yes, pred does have side effects but not everyone gets all of them and the benefit of bring rid of the awful pain outweighs the side effects in my view.
This is a horrible situation to be in and you should be being helped. If steroids worked for you then you need them again asap. Please see a sympathetic doctor quickly. Sending you big hugs and good luck.
You have my sympathy - I went through the same thing as my blood results were also normal. This happens in about 1 in 5 or so of patients - they just never develop this "acute phase reaction" as it is called. No one knows why but it happens.
She is talking rubbish - if you responded so dramatically to pred that is regarded by many as distinguishing simple PMR from other causes of the same symptoms. Will your orthopaedic guy not look at this response and help? Where are you? I've looked at your profile but you haven't filled it in - that does help us all a lot.
Go to this post on this site:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
and you will find links to other useful places, especially the first one. The last link is for a paper aimed at GPs to help them diagnose and manage PMR. Unfortunately for you (and me) the criteria the Bristol group quote include raised acute phase reactants but they also describe the "pred sandwich" they use to distinguish PMR from other arthritises. They give vit C for one week, 15mg pred for one week and vit C for a further week. Patients who show a 70% improvement in symptoms within 24-48 hours of starting that dose of pred which then return as soon as they stop the pred are diagnosed with PMR (the vit C is given as placebo). That would fit you. Show it all your doctors and see if any will help.
If you are in the UK - try a different GP in the practice, or even move practice. The rheumy I saw wasn't helpful but a different GP in the practice was - she had seen it before and happily gave me pred. Yes, another poster has said there are other causes of the symptoms - she is quite right but since you responded so well to the pred that is fairly clear that it is a "pred-responsive PMR".
I have been on pred for 5 years - I have no diabetes, I did have weight gain and raised cholesterol but having lost weight that is all under control, my bone density is no different from before. There are 82 listed side-effects of pred, no-one get them all, some people get none. But being in constant pain and immobile will almost certainly lead to depression and osteoporosis - inactivty/immobility are high risk factors. Yes there are side effects - but at 15mg and below they are manageable. And her painkillers that she is so happily handing out also have side effects long term - especailly oromorph.
Have you made it obvious how ill you are without pred? Try demanding a house visit because you can't get out of bed. Take your partner or a close friend with you, especially if they are male - it's amazing how THAT concentrates the mind of the average GP, disgusting though it is, although that is usually less of a problem with female doctors.
But the bottom line has to be - different doctor.
I agree with most of what you say Eileen. I responded dramatically to pred, but it still turned out I did not have PMR. I think it helped initially but I am so glad that my doctor realised it was not the case and weaned me off. I am back to full health now and no PMR. I was wrongly diagnosed. I certainly was not talking rubbish.
Shazzywazzywoo
i have psoriatic arthritis and have now been informed I have PMR and you are not supposed to have the two together, but I have. I have been taking preds for over 2'years and have small breaks for about 6 weeks but have really bad flare ups when not taking preds. I also have on occasions had very low ESR and CRP results but still have PMR!, maybe see another doctor, and a new consultant may help.I take 25mgs of Methertrexate for my arthritis some times it helps other time it doesn't - good luck
I meant the GP not you. She is talking rubbish saying she can't prescribe pred any more - that is absolutely NOT the case.
However - you could have had a mild attack of pred-responsive PMR. It commonly appears in response to stress and it may be the underlying autoimmune disorder that causes it burnt out very quickly for you. Many experts say that PMR lasts for longer than 6 weeks and encourage a wait of that long before using pred to see if it burns out relatively quickly. There are patients who recover from PMR very quickly - and the idea of the reduction is to find the lowest dose that controls the symptoms: doing that steadily would have had you off pred quite quickly if you had no flares. I know a few who have been off pred in between 1 and 2 years once they reduced slowly enough to avoid steroid withdrawal symptoms.
If PMR disappears quickly there is no way of saying whether it was/was not PMR. PMR is a clinical diagnosis, based on history and symptoms and response to pred. There are no definitive tests - and that is the primary problem.
I think you are quite correct about it being wrong to stop the pred after a week, particularly when it achieved a result. But shazzy has had this for 20 months - this is something that should have been referred long ago, this GP is not doing her job. To claim she can't give pred (when it works so well) when she happily provides pain killers is very poor practice.
As cat lady demonstrates it is also possible to have more than one autoimmune disorder - and exhibit symptoms of 2 or more. Then the diagnosis should be "cross over syndrome" and you use the medications that provide the best relief. She should be left on the lowest dose of pred that avoids a relapse - allowing the inflammation to return leads to other problems, but it seems some doctors just don't either know or believe this.
Thank you. Unfortunately doc wont prescribe anymore and wants me to see a rheumatologist so I have to wait god knows how long for that now x
Thank you, I will see orthopaedics in ten days, i will talk to him x
Yes definitely, thank you x
Yes you are right and its good to hear that not everybody has all the side effects. I felt so good when I was taking them i walked normal! I even felt I may be able to go back to work, after being stuck in bed for so long. I could get myself dressed, even put a bra on! Surely she should understand that being unable to do all of those things again is going to make my life so much worse than the possible side effects of the prednisolone. I will fight this I think! Thank you x
I have been so many times over the last year all at the surgery should know how bad it is, i cant even sit down most of the time cos of the hip pain, and instead hold on to the back of the chair. I need a stick too and they can see that. I am on the Wirral. I will definitely make a nuisance of myself now after this advice -thank you x
Good for you! Its your life and your body and you know what is best for you. Believe me, so many of us on these PMR forums have been in a similar position, including myself so you have a lot of sympathy.