Not PMR but RA

[Seal49]

My Rheumatologist said I do not have pmr but ra based on all signs like hand cramps and thighs pain when I first get up. Insists the prednisone is not necessary and wants be to keep reducing by 2.5 mg a week from 17.5 where I am now. Started me slow on SSZ yesterday (500mg) and eventually will go to 3000 mg a day. Any thoughts?

[PMRpro Ambassador]

Blowed how he can allege hand cramps and thigh pain isn't PMR but RA. I had both, 18 years ago when PMR started and there is absolutely NO evidence of RA now.

However - it is difficult to argue with the person who holds the prescription pen! Either you humour him and see what happens or you get another opinion.

[piglette]

Is your rheumatologist saying that you don’t have PMR symptoms?

[Seal49 in reply to piglette]

Not sure until I talk to my Rheumatologist. My CRP is <5 and my E S R is < 20. what else I'll ask him. Any idea what blood results could give him this conclusion?

[piglette in reply to Seal49]

Around 20% of people do not get raised markers, so one really has to go on symptoms. Usually a trial with steroids for around a week is tried and if a good result is achieved then it is probably PMR, on the other hand if they do not work it isn’t! Did the pred work well for you?

[Seal49 in reply to piglette]

Yes as it reduced the inflammation.

[PMRpro Ambassador in reply to Seal49]

Where you already on pred when the blood levels he's looking at were done?

[Seal49 in reply to PMRpro]

Yes

[PMRpro Ambassador in reply to Seal49]

Then you would expect them to be normal! Duh ...

[Seal49 in reply to PMRpro]

I will speak with him next week as he is on vacation until next Tuesday.

[Myfoe]

boulder dash! I have Had PMR for a year now my wrist & hip pain along with all the other PMR symptoms confused the original diagnosis but I do not have RA we tested that possibility to death…

[Seal49 in reply to Myfoe]

He keeps insisting how dangerous staying on prednisone is and wants me off asap

[PMRpro Ambassador in reply to Seal49]

I've been on it for 14 years - most of it at above 10mg, Hasn't killed me yet but I have had a rather better quality of life than the previous 5 years without it. It is the primary means of managing PMR and GCA - if there were effective alternatives, they would use them.

[DorsetLady PMRGCAuk volunteer in reply to Seal49]

Really? What is it with some of these people who should know better.

[piglette in reply to Seal49]

You would have thought some of these doctors thought they were prescribing arsenic the way they go on. There are around 200 things for which steroids are prescribed. If they were that bad they would have been taken off the market. A lot of drugs are powerful.

[Seal49]

I am. He is on vacation until next Tuesday. Thank you

[Seal49]

I agree with you but he says it is not PMR but RA

[AtopicGuy]

'Arthritis' means 'diseased (inflamed) joints': the tissues where bones meet. 'Polymyalgia' means 'pain in many muscles'. Many of the painful muscles in PMR are near the joints, but they are never inside the joints. Do you have diseased joints? It's odd that some rheumatologists find the distinction confusing. For example, despite having the classical pattern of symptoms for PMR, I have no diagnosis because I test normal for inflammation. Yet two rheumatologists have said they would happily diagnose me with arthritis, despite the fact I have no diseased joints! I had to give up work aged 58, and massively cut back on DIY and gardening, due to the hand cramps and additional fatigue, weakness, stiffness and pain caused by physical activity. It is worth remembering that there is a muscle in the hand that controls the (opposable) thumb. but the fingers are connected by tendons to muscles in the lower arm. These are between the elbow and wrist, nowhere near a joint, and those are the muscles that cause the fingers to cramp when fatigued. If I do too much, one or more of my fingers clamp across my palm and I have to lever them straight with my other hand.

[1951grumpa]

I was working when I was diagnosed with PMR. I used my hands a lot in my work. My hands didn’t cramp until I was on steroids! The first time I noticed was while driving , my hands would cramp onto the steering wheel. And at night my feet would periodically cramp. Especially while in the recliner. They’d come on so quickly I couldn’t get up. So much so my wife would pull them back.

[DorsetLady PMRGCAuk volunteer in reply to 1951grumpa]

Thats because corticosteroids may increase the body's loss of magnesium. Why many on here take magnesium supplements…. or use Epsom salts in the bath… or just in a bowl for hands…