I have had painful legs for 3 months and a Moon face
Posted , 6 users are following.
I have been away on holiday and home now for 1 month. I was wondering if other PMR sufferers have had this constant pain in legs and upper arms. My Dr has tapered my Pred. down from 36mg to 10mg over 1 month, he was concerned of long term use of Predn. which I have been on for nearly 1 year now. My legs only started to improve yesterday, but still sore, even to touch. He sent me to a Physio and he more or less told me what I have been doing, walking for half an hour each day and to keep this up, though I am getting very tired and a bit breathless, especially going up hill.
I am also wondering if other sufferers have had strange things happen to them with this Predn. I shaved my legs 7 weeks ago (as you do), and the hairs have not grown back, then I discovered very white down hair growing on the sides of my face, my Dr said this is the Predn. Also I have had a Moon face for 3 months, which is quite worrying. I am suplementing my Pred. with Panomax 500m which is a Paracetemol, I take 3 to 4 daily, to help with discomfort.
My blood pressure is normal, though my pulse rate has gone up over 100, the physio was quite concerned as it was 118, this has not happened before, maybe it is the Predn. doing this. I am due to see my Dr in another 5 days.
My last blood test ESR was normal, inflammation was very high, that was 5 weeks ago.
I have been reading these discussions, and really appreciate your views on all the different problems that are displayed here.
thank you,
Track
0 likes, 14 replies
tavidu track
Posted
track tavidu
Posted
I realise he dropped me to fast, he said I was on Predn. too long, been on it for 1 year now, however I will take on board the advice I am receiving from this forum, and taper down slowly. I have given my Dr some information I have discovered on my Computer and he seems to take it on board with no worries, I will certainly put my foot down now if he suggest tapering faster than necessary.
thank you once again.
Track
tavidu track
Posted
Handbrake track
Posted
take care x
track Handbrake
Posted
done 1 month ago, so happy there. I noted that the Dr. dropped me very fast I questioned him re this, but he said to do it, it was over a 3 week period, i maybe did not mention this, but I know it was still too quick.
thank you for your input.
regards, Track
EileenH track
Posted
That doesn't make sense - ESR is a measure of inflammation.
I would suspect that part of your pain is now something called "steroid withdrawal rheumatism" - that is a far too fast reduction after being on pred for a year. Do I understand you have been on above 30mg for the entire time? If so, that was not only too high a starting dose for PMR but you should also have started reducing after a few weeks. I do understand why your doctor is concerned about being on pred for so long at that dose - unless you were originally diagnosed with GCA which DOES require those sort of doses. However - if you need a bit more than 10mg to manage the PMR currently then you will have pain again. If the cause of the PMR is still active, the pain and other symptoms will always return at too low a dose.
If what you have is PMR then it is unlikely that paracetamol will do anything useful (more and more evidence is being published that it doesn't do much for anything musculoskeletal but that's another story!). Pred is the pain management medication in PMR and the idea should be to start with about 20mg, achieve a good result and then reduce to find the lowest dose that achieves that. Done slowly and carefull most people get to below 10mg for longer term management until the cause of the PMR goes into remission - which can take from 2 to 5 years or even longer for some.
All the things you describe are common side effects of pred - but will often go as you reduce the dose.
You will find links to a lot of reliable info via this link:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
track EileenH
Posted
sorry I may have misled you, my ESR was normal though CRP was very high, which I am assuming is inflammation. I was diagnosed with GCA last year and he started me off on 50mgs Predn. tapering down over a few months to 15mg when I had a relapse. Then up again to 36 mg Pred, which was on for for quite a lot of weeks. On coming back from my holiday in April, that is when he decided to drop the Predn. quite dramatically. I am still on 10mgs at this point, and feel the discomfort in my legs when the medication wears off after 12 hours. I am due to visit with him in 4 days time, when I am sure he will want to drop my med. again, though I will certainly take note of how much he will want to drop it. I had a very good day yesterday, no pains when med. wore off, but now back to pain again, though not as bad.
thanking you for your feedback.
Track
ptolemy track
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EileenH ptolemy
Posted
ptolemy EileenH
Posted
Oregonjohn-UK ptolemy
Posted
EileenH ptolemy
Posted
I do't think I have frightened GPs - but they know not to mess with me!
And why an orthopaedic SURGEON? You don't need a new hip or knee do you?
ptolemy EileenH
Posted
iellen32 track
Posted
Our Rhyeumatologists do the tapering wrongly too fast and the result is a disaster- flare ups, pains, etc.
I am going through another flare up since I followed my doc advice - after saying I had learned the lesson on that matter(!) going abruptally from Pred 20MG to - 10mg .
Not only couldn't do it because it affectated my vision but I had to increase the amount of the Pred to the level is comfortable.
Wish you all the very best and the expected outcome.
🍀