Do I really have PMR?

[SimpleLyfe]

Before diagnosis I was put on 60mg 10 day taper of prednisone and symptoms went away for 2 weeks and returned. As a result I was diagnosed with PMR. Went up to 25mg prednisone without relief and didn't want to go higher. Do I have the right diagnosis if 25 mg didn't even touch my pain?

[DorsetLady PMRGCAuk volunteer]

If you were put on 60mg albeit as a tapering regime that’s usually the dose for GCA with accompanying sight issues.....did you have that?

So what dose were you on at end of 2 weeks (zero?) before the 25mg.

The response to steroids would indicate you might have PMR or GCA, but it’s a bit of a sledgehammer to crack a nut for PMR....and if 25mg isn’t giving relief - it might suggest GCA.

How long have you been on 25mg? And what’s the regime going forward?

Have to say at your age, both are doubtful, not impossible, but unlikely.

[SimpleLyfe in reply to DorsetLady]

I didn't have sight issues then but I do now....right eye gets cloudy all the time. Yes I was in 60 down to zero for 2 weeks then 25 for 6 months but started tapering because it wasn't helping anyway. On 10 now.

[HeronNS in reply to SimpleLyfe]

What does your eye doctor say?

[SimpleLyfe in reply to HeronNS]

Have though about going to regular eye doctor as they could get me in right away. Have appointment with opthamologist end of month.

[HeronNS in reply to SimpleLyfe]

Yes you do need to see a specialist. But if you think it's getting worse please don't hesitate to seek emergency help.

[SimpleLyfe in reply to HeronNS]

Yes, was in ER last night. Hooked up to a heart monitor for a couple days. My glucose was crazy low. Told me to eat more and eat more often. (My heart was racing)

[HeronNS in reply to SimpleLyfe]

Oh dear, I hope you're feeling better now. My only experience of racing heart was when I had to take my (young adult at the time) son to emergency because of an anxiety attack; his heart rate was so scary high I purposely blotted it from my memory.

[SimpleLyfe in reply to HeronNS]

Oh yes! I have been there! I think this was a reaction to cassava flour. My glucose was very very low but that's all they found wrong with me ...wasn't eating enough calories.

[DorsetLady PMRGCAuk volunteer in reply to SimpleLyfe]

The cloudiness could be the steroids, but it does need checking, and as PMRpro says you do need to see a specialist re your symptoms.

[PMRpro Ambassador]

If 60mg was your starting dose that would work to relieve pain from other sources of inflammation and it really isn't the way to add information for a PMR diagnosis. At your age there are a lot of things that are more likely to be causing your symptoms than PMR and any competent doctor should have been aware of that - and the dose they used confirms they don't really know a lot about PMR and its diagnosis. You need to see a rheumatologist who will investigate and rule other possible causes of the symptoms out or in. Some of them are potentially serious so it is an essential part of your diagnosis.

[SimpleLyfe in reply to PMRpro]

Ty! Last time I asked to see a rheumatologist I was told no (by pcp). I just sent an email pleading for a referral.

[PMRpro Ambassador in reply to SimpleLyfe]

I have no idea what your guidelines are in the USA but in the UK anyone atypical for PMR should be sent to a specialist, and you are atypical because the age guide for PMR is over 50. It isn't impossible to have it younger, but age is a primary criterion. Under 50 there are a lot of things it might be that are more likely.

Can you change your PCP?

[SimpleLyfe in reply to PMRpro]

That is in the works. I have an appointment end of month I have been waiting for with the opthamologist for my eye thing and was told that if I change PCP then I have to get a new referral for that and get back on waiting list. Plan to change PCP after that. If I make it that long.

[SimpleLyfe in reply to SimpleLyfe]

He sent referral today. Fingers crossed