Diagnosed with PMR 3 months ago
Posted , 7 users are following.
Much to my dismay I have noticed that the prescribed prednisone dosage of 15 m for 1 week and then lower to 10 mg by my Primary Care doctor did not take care of my shoulder and lower back pain. I needed to go up to 15 and even 20 mg to be painfree, always worrying that the steriods would do harm to my health in general. I was also diagnosed with RA a few years ago when 5 mg Prednisone would be enough to take care of flares.
The PMR diagnosis was a total surprise because I was in such pain with especially my right and then my left shoulder. Any repetitive movement would cause a problem. I had to quit my exercise class which I liked. Dreadful!
I happen to read the informative Patient UK article about SELF-ADJUSTING STEROID DOSE WITH PMR which helped to explain to not lower suddenly....not more than 1 mg for a length of time.
I am still in the informative stage as this is new to me, and I can still hardly believe that this is happening to me. I had never heard of Polymyaglia Rheumatica before.
It looks like that only this UK Medical Website is informative. I live in USA.......
It feels good to talk/write about it......one does not feel quite so alone with this problem if one can share it with others who understand and suffer the same.
Right now my left arm is hurting.....and I need to stop typing.
I feel I have a long road ahead with PMR......
Thank you for your input and caring.
Erika
4 likes, 14 replies
tavidu erika59785
Posted
All the very best, Dave
erika59785 tavidu
Posted
I will try the no more than 10 % a month!!
Hopefully, it will help. The pain is truly awful!
Erika
erika59785 tavidu
Posted
I will try the no more than 10 % a month!!
Hopefully, it will help. The pain is truly awful!
Erika
EileenH erika59785
Posted
Follow this link to find further links to other useful and reliable sites and a paper about PMR management aimed at GPs/PCPs so your doctor shouldn't get upset at you pointing it out to him/her.
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
In posts 4 and 5 on the thread you will find a very slow reduction plan that has been successful for many people already.
Dave - it isn't 10% per month, it is that any reduction should not be more than 10% of the current dose. 10% per month may still be too fast for sme people. The reduction plan I have just mentioned is actually less than 10% until you get below 10mg and each reduction is spread over about a month. The pain associated with bigger reductions isn't PMR, it is steroid withdrawal pain and tht can happen in some people even at the dose you are on. Consider doing 1mg at a time every few weeks when you start your reduction - I have come across several people who couldn't do more even above 20mg.
tavidu EileenH
Posted
erika59785 EileenH
Posted
I agree with you. I will try the 10 % reduction per month. I am on 20 mg at the moment. I feel good, and I always think I can reduce by 5 mg when I am without pain, but 5 mg is too much.
I will follow the link. I WISHED THE DOCTORS WOULD AGREE!!!
I will give it a try and talk to him on Tuesday when I see my RA doctor.
erika59785 EileenH
Posted
May I ask your opinion about this?
Thank you so much.
Erika
EileenH erika59785
Posted
If you look at the potential side effects of anything you wouldn't take it - and that includes aspirin and paracetamol as well as most other pain killers! Your PMR probably needs a bit more than 5mg pred for a while - but the RA doctor maybe feels that using mtx instead of the plaquenil might kill two birds with one stone.
erika59785 EileenH
Posted
Your opinion about MTX helped me to decide not to take it. I hear that it is terrible on the stomach and other side effects.
My Primary Care Doctor thought I would do okay with 15 mg for a week and then go down to 10 which did not work well. I have had 3 flares within a 3 months period. I hear from you and Dave that I should taper by 10 % monthly. I am now on 20 mg because of shoulder and back (girdle) pain.
THANK YOU SO MUCH for answering right away. This is a wonderful website in the UK. I feel I am not all alone with this painful health problem.
Erika
EileenH erika59785
Posted
erika59785 EileenH
Posted
Much appreciated.
Erika
heather39822 erika59785
Posted
I have found the postings on this forum a lifeline to others' understanding and support of this seemingly largely unknown ailment. They help me feel less alone in facing what appears to be a long and rocky journey. I look forward to reading of your progress. Heather
erika59785 heather39822
Posted
I feel for you, especially having limited information about PMR where you live. I don't think you need 40 mg......20 mg will take care of the pain/flare. After 5 days taper down to 17 1/2 for 5 days. Then 15 mg for 3 weeks.....12.5 mg for 3 weeks.
This is the Maintenance Schedule for PMR Medication I found by 2 doctors as of this year.
It is indeed a long and rocky journey for PMR sufferers, and so many people do not know about the problem. Even some doctors do not know how to treat it well and would even prescribe Methotrexate which DOES NOT help. I had this problem trying to convince my RA doctor that I had this new pain in my shoulders and lower back. He only hesitantly agreed that I might have PMR. My Primary Care Physician had more knowledge and prescribed Prednisone for it, because this is the only medication which helps the horrible sick feeling, being VERY tired and in utter PAIN.
Take care Heather. Hope, this helps to read my story.
Erika
erika59785 heather39822
Posted
I just read a VERY good response ......no more than 10 % reduction a month of the starting point of Prednisone. Like in your case, it would have to be about 5 mg less a month.
Wow, this is so tough, but Prednisone works and makes life liveable.
The Adrenals are exhausted and Prednisone helps the problem as long it is respected with SLOW reduction. SOMETHING I HAVE TO LEARN MYSELF!!
Take good care. I would like to hear from you again.
Erika