MY EXPERIENCE - PMR WITHOUT STEROIDS

Bones, joints and muscles
1

Hi,i am 42 and have been suffering from PMR for about 2 years, my

condition was not diagnosed until recently because i had other medical

problems which were serious, so my aches and pains were not top of

the list. About 4 months ago it got much worse especially my arms

shoulders hands and knees. I am in pain all the time but if i go outside

my comfort zone, as i call it, the pain is unbareable. This happens if i

try to raise my arms, or move my arms slightly backwards. I can not

get myself up once i am sitting on the floor because of the pain and

weakness in my limbs. I wonder if anyone gets uncontrollable shakes

in their arms and legs when climbing stairs and trying to support your

legs and knees with your arms? As many sufferers know, PMR is very

debilitating and if affects your whole life. I do not moan to other people

because they very rarely understand how much pain it causes.

Unfortunately i am unable to take steroids due to a stomach condition

so i rely on codeine which i am fast becoming imune to. I wonder if there

are any other sufferers that can not take steroids? Also has anyone tried

these gadgets that are advertised for\"Natural Pain Relief\"? I would

welcome any comments you have.

2

Hi Mish

You need to discuss the situation with both your GP and your Consultant Rheumatologist.

There is another medication called Methotextrate, but whether it can be used without steroids I am not sure.

If you visit eith the British Society of Rheumatology and follow the link to a document issued June 2009 on the guidelines for treatment of PMR you will be able to read it all up - also the same document is currently on www.pmr-gca-northeast.org.uk.

In answer to your other question on pmr as I do not have pmr (I have GCA) I am sure a pmr person will soon come along and answer the other questions you have asked.

Good Luck and I hope this helps

3

Hi Mish1

It is not unusual to suffer from shakes or trembling due to PMR - at my worst stages of undiagnosed/untreated PMR, I suffered a similar experience.

That's good advice from Mrs K to seek guidance from both your GP and Rheumatologist. There has to be some sort of medication available to you if you are unable to take steroids. If you feel you need a second opinion, go for it! Meanwhile try to eat as many anti-inflammatory foods as you can and the best you can afford: beetroot; pineapple; turmeric; oily fish such as sardines, mackerel, salmon. Do hope you get some expert help soon.

Mrs O

4

Hi poor you. I only stayed on steroids for three months, and I manage by taking diclofenac sodium. It's a slow release medication and I take 75mg a day. If I miss a day the symptons start coming back after about 28 hours. This doesn't make me completely pain free, but my rheumy and I are happy that I can cope with some pain and not get myself traumatised by the steroids again. There are of course side effects if I take it long term (already been on it since end Feb) but they're not in the same league as steroid side effects.

I still get pain and aching in the back of my legs, particularly after going upstairs... my throat muscles are affected too (and neither steroids or diclo have helped that). Can only lift my arms out sideways after exercise.

I'd really like it to all stop now please.

5

Hi everyone, thanks so much for your helpful comments. I Find it so

amazing how everyone differs with this condition- symptems pain

relief and how long it lasts etc. I have had this over 2 years, but only

in the last 4 months has it become so much more painful, nearly every

day i discover something else i can not do. Am waiting to see the

specialist on 18/11 to see if he can help with the pain without steroids.

Again thanks for your advice, its nice to know how other people deal

with the pain and can still keep cheerful.