My own PMR discussion

Bones, joints and muscles
1

Having answered Snapperblue's discussion 3/4 days ago, as follows:

"Hello.  I too have only recently been diagnosed, and therefore coming upon this site and reading yours and the other comments has been very helpful.   For several months my very painful hips, neck and shoulder have been put down to arthritis, as I already have had this in knees and feet for several years.  However, the pain and stiffness was getting so bad that I drew sketch diagrams of my body and marked clearly in red where all the pain was and showed these to my GP.   He straight away suspected PMR and requested blood tests, but these were not very conclusive.   However, on 07.01.15. he started me on 15mg Predisolone, and led me to believe that I should be feeling wonderful in a few days!   After 4 days, I must admit I did feel a lot better but one week later, 14.01.15., my pain is back with a vengeance.    It is most encouraging to read that the commencing dose of 15mg  is not strong enough for some people - so I shall report back to my GP, and see if he will increase it.    Many thanks."

Now, having received some very helpful replies from several people, in particular Christina66394 and EileenH, I have decided to start my own discussion.

I must admit EileenH that having started on the Pred, and feeling better, I have not "overdone things", but equally well, I have just carried on with my normal life without trying to pace myself and rest more.

I went back to  my GP, Christina66394, and he has increased the Pred dose to 25mg, which I  started on yesterday.   (So, 15mg from 7 January, increased to 25mg on 17 January).  I must admit the stiffness is considerably better, but I still have quite a lot of pain around my hips and top of thighs.   However, I have had the pain for a long time, so, in my opinion, I can't really expect the inflammation to disappear overnight - can I?

I have also found all the discussion regarding weight gain and diet of great interest.   Like Christina66394 I have been more than 3stone overweight for probably 5/6 years now, and therefore am hoping that the Pred will not increase this even more.   I think I must investigate "inflammatory foods" online, and endeavour to start myself on a diet cutting down carbs.

Also EileenH, I was very interested in your comments about balance and PMR.   For a long time my balance has not been good, and I thought it was simply because I am overweight.   Now I am wondering if it is yet another of my PMR symptoms - which to my mind seems more likely.

I really appreciate these discussions, and am so pleased I found this site.  Thank you to everyone who has answered me, and please keep giving me the help, advice and comments.   I am a "new girl" in the PMR diagnosis, so need all the help I can get in managing my condition.

2

If you have a lot of pain in the hips/groin/top of thighs it sounds more like bursitis than the PMR affecting the muscles - that will take some time to improve, mine was probably 5 or 6 months before I suddenly thought "it's gone!". This is because if the bursae/tendons are inflamed they don't get pred from the blood supply, the pred has to diffuse into the synovial fluid around them and then it gets to work. That is why a local cortisone injection often achieves a faster effect without having to risk the side effects of a higher oral dose. So, no, you can't expect it to disappear overnight! I've just had a flare of hip bursitis and even a week after a cortisone shot there is still discomfort at times and it really makes itself known if I try to walk far. 

REST!!!!!!!! There's all the time in the world - and it does help get better sooner. Honestly!

3

Thanks so much EileenH.   That information is such a help.   You have really encouraged me!

4

My concern is that you have fibromyalgia not pmr

as pmr STOPS YOU LIFTING YOUR ARMS at all very few have stated that

in fibromyalgia you get pain shoulders arms pelvis thighs knees and ankles

you get some relief with pred

5

Gillian: "pmr STOPS YOU LIFTING YOUR ARMS at all"

That isn't entirely true - it depends on the patient and which arteries are affected. Many patients can lift their arms, I could LIFT them, I couldn't reliably USE them without pain and risking dropping things. 

The statement about pred not helping fibro was made on the basis of the comments made by several patients who have both. They all say that the pain that was fibro before they developed extra pain that has been dx'd as PMR (or vice versa) is a) different in some way and b) fibro pain did not change when put on pred, whatever dose it was. 

I'm not denying you get pain all over the place in fibro - but you do in PMR too.

6

Hello dianthusdoris, I'm so pleased that some of my comments were of help, but most of my knowledge comes from Eileen and from others who contribute on this site, oh, plus my own experience, as you know I am not medically qualified. 

I'm glad that you went back to your Dr re the lower dose not really working well and he prescribing you a higher dose that appears to have worked well. But as Eileen has said the immediate dose should make a huge difference then throughout the coming weeks that's when you will see a difference to the remaining pain. If I remember rightly the improvement to my hips was a bit hit and miss for at least a month. By that I mean the deep intense pain had gone but any amount of extended walking, etc, then the next day boy did I know about it.

hopefully, should everything go well on this dose your Dr will attempt to taper your dose. Take heed of all you read on this forum- reduce slowly, slowly but forget about that for now because you won't be reducing for some time yet. Good luck, christina 

7

Thank you very very much Christina66394.  Your comments are very helpful - and I will keep you posted on my progress.

8

Hi Gillian, I have had PMR for just over 2 years and started on 20 mg of prednisone (white tablets) and now attempting to go to 3.5mg.

My PMR started in my arms and legs. We had just moved our office and I thought I had just overdone it lifting boxes. Before being given the pred. I could barely wash or brush my hair. My arms only stopped hurting if I rested them in my lap. Don't get me wrong here because I could hardly get out of bed due to pain in my back and legs. I think the arm thing isn't mentioned as often because we tend to talk about our backs and legs since they get us going.

It is so different for everyone. This forum is amazing and you will find answers to all your questions and help you make the right choices for YOUR body.

Have a peaceful and relaxing day free of pain.

Hugs, Diana

9

Hi im having a lot of pain in my hip and its causing to limp wondered if it is pmr can u tell me what pmr is and the sympthoms thank

10

If it is just pain and in one hip it is far more likely to be a bit of bursitis or something else.

PMR is polymyalgia rheumatica. Follow this link to the page on this site:

https://patient.info/health/polymyalgia-rheumatica-leaflet

11

Just had blood tests doctor is thinking swollen blood vessels thats why i asked thanks

12

Hello again, EileenH.   I have turned up again like the proverbial bad penny!   Although you have not hear from me for the last 3 months, I have continued to follow these threads, and have learned a lot about PMR from people's comments.

Following my chats with you and Christine66394, I have taken your advice, and have been cutting down the Preds slowly.   I am now on 14mg per day, and must admit I am beginning to feel better in myself.  On your recommendation, I spoke to my GP and he sent me for a scan on my hips, and this revealed Bursitis and Tendonitis both sides.  However, I am still in a lot of pain as still waiting for the promised Cortisone injections.   I was told in March that it would be 2/3 months' wait - and I am still waiting!

Another question I would like to ask:   I have been having quite a lot of sore "spots" on my scalp and also around my buttocks.   Are these due to PMR, or side effects of the Preds, please?   Also, over the past couple of weeks I have developed itching and burning around my ear lobes and the outside of my ears, and am wondering if this, too, is PMR inflammation?

Many thanks, in anticipation of your help.

Doris 

 

13

Hello Doris, lovely to hear that your PMR journey has been improving. Heavens! 2 to 3 months wait for some steriod injections. That's ridiculous. You'd think that an appointment would have been sorted out within a couple of weeks or so.

regarding the sore spots on your head. Can't help you with the sore spots on your buttocks, but I have suffered from one sore spot only on the top of my head for years, maybe 5 or 6 so don't think it can be put down to either the PMR or the preds. The patch us probably about the size of a £2 coin. It is not there permanently but every so often. On the whole it is painless but if I scratch it I awaken the sore so to speak. It is not itchy and if I look at he area concerned there is nothing, no sore or redness, weird I know!

also I cannot help you with the itching and burning around your ears.

hopefully, Eileen and others will be along later yo answer your queries. But as I said it is great that you have improved and your PMR journey of recovery is well on the way. Do keep in touch. Regards, christina 

14

What a pathetic GP - can't he give you cortisone shots? It's my GP who did mine the second time round. They aren't necessarily into the joint itself, just into the soft tissue at the point of the hip bone. That is the sort of thing that can be done in minutes - how very silly! My first ones were done in the emergency department by an orthopaedic duty doctor because there was a some fear about bleeding since I'm on warfarin - but the decision was, not into the joint at all so no problem.

I've just realised I ignored your balance query in the original post - we've just been discussing it on another thread, as I'm sure you will have noticed! Yes, very common in PMR and Nordic walking is recommended as is tai chi/qi gong.

Like Christina I'm bemused by your sore patches and itchy ears - you would think pred would calm them down. However, I've just had a sort of itchy scaly rash at the back of my ears, where the legs of your specs sit, does that make sense? My GP gave me a cream as she thought it looked sort of fungal but what she gave me just burned and made no difference I could feel but I found an old tube of Trimovate and just 3 daily applications of that cleared it up. It returned after a couple of weeks, though not as bad and another few applications seem to have got rid pf it - fingers crossed! So possibly fungal but the wrong cream!

So glad you are feeling somewhat better - but do prod your GP about your injections. What is the point of leaving the patient to get worse when a few minutes would make such a difference to the pain.