Is Polymyalgia a connective tissue disease?

[Runrig01]

I visited my Rheumy today, this is only the 2nd time I've seen him, as I was under a previous rheumy before. Today was organised at short notice by Rheumy nurse. Since reducing to 7mgs 6 weeks ago I have had cramp in right arm. Temple pains, tongue and jaw cramps continue. He wouldn't even enter discussion re these symptoms. Just kept telling me because bloods have always been normal it is unlikely i have a connective tissue disease!.Despite my PMR responding to 6mgs of Pred he suggested we just stop it, and continue on just Azathioprine. I gave him a resounding NO. If the stiffness and pain returned as it was prior to starting steroids I could not continue working. I can't understand why he is keen to suddenly stop if they are working for my PMR. In the end he increased my Azathioprine and suggested I try a low dose of Gabapentin for the cramp. I have to see him again in 4 weeks, feel there will be more pressure to stop Prednisolone :-?

[Celtic PMRGCAuk volunteer]

Glad you stuck to your guns, Runrig - you know how you feel more than he does. Have you seen a physio about the arm cramp - s/he might find some knotted muscles in the shoulder blade/neck area perhaps, in which case some gentle massage might help.

[Runrig01]

Thanks Celtic, I am currently seeing a physio at work. We can self refer, he says there is some problem with the rotator cuff but that it doesn't explain the cramp. Am giving the Gabapentin a try tonight, so fingers crossed.

[polkadotcom]

It took a while before Gabapentin had any effect on my Fibro. Not sure if the same will apply for you, especially if you are on a low dose.

It must be the silly season for Rheumies, complaints about them have risen considerably in the last few days.

[Hidden in reply to polkadotcom]

Thank you polkadotcom, your silly season comment has really made me chuckle. It just perfectly encapsulates the problem.

[paddyfields]

"unlikely" does not seem to be a good enough reason to ignore your symptoms, especially as jaw and temple pain are association with giant cell atheritis which affects the eyes. Can you not get a second opinion?

[Runrig01]

This is the second Rheumy I've seen, the problem they have is I'm 48 with normal bloods. He reluctantly accepts I have PMR. Showed both the Rheumy and nurse photos of tongue, with clots and ischaemic areas, she agrees it looks vascular, no comment from Rheumy. Just then stated let's try stopping steroids - NO. I seen a neurologist who says it is possible GCA all being it would be exceptional, see him

Again end of July, fingers crossed x

[Sharice21]

Hi do you get tongue cramps?I get tongue cramps and am trying to find the source as gps are at a loss

[Nextoneplease in reply to Sharice21]

Hi Sharice 😊

This is a very old thread (7years) so just to be aware, replies may be sparse…..x

[Sharice21 in reply to Nextoneplease]

I should've looked at that first,thankyou Nextoneplease