Worried I may have GCA

[Harpgirl]

I’m new here, and I have all the symptoms of PMR, but with normal blood counts. I realise now I’ve been tapered down off prednisone far too quickly (30mg to 2mg, back to 10, then 2mg, and now 5mg, within 18 months). I have fibromyalgia, but this pain is completely different.

I’ve been reading several posts about GCA, which I didn’t know a lot about, and now I’m concerned: since this illness I have had times of blurry eyes, especially in the morning. I’ve had constant headaches for 40 years, but the headaches have been worse for a number of months, again especially in the mornings. I’ve had some full blown migraines in the last few months.

A week ago, as I was getting ready for bed, I had intense pressure in my head, which felt almost too heavy to hold up, and the room was swimming around me - I became extremely clammy, and I barely made it to bed without fainting.

I have pain down both arms, into my hands, which was definitely better when the prednisone dose was higher.

I’ve also noticed loud ringing in my ears several times a day.

About 6 months ago I called the ambulance who took me to emergency, as I had shortness of breath, my chest felt tight, and the pain in my arms was bad. The paramedics noticed I was very clammy. I had blood tests and a chest XRay, and everything was normal, so I was sent home. My doctor followed up with scans and a stress test for possible heart problems, and they were normal.

I’ve had excessive sweating from the beginning of this, and often get extreme chills after the sweats..

When I’m on lower doses of the prednisone I’m very weak and extremely fatigued.

There is tenderness and pain on my temples and scalp, but it’s hard to know if this pain is different from my usual headaches.

I’d appreciate your input, as I’m really stressing, and probably needlessly.

Thanks so much!.

[PMRpro Ambassador]

Are you under a rheumatologist or just a GP (not sure of the mechanics of management in Australia)? Personally, I would have called an ambulance with the episode you had the other night - the clammy feeling is a taken as a red flag by paramedics as it is often a sign of cardiac problems. The advantage of calling them is that they will usually get an ECG done at the time which may provide evidence that has disappeared by the time you get to hospital. But there are other causes - have you got a BP cuff? Also worth checking.

[Harpgirl in reply to PMRpro]

I’m under a GP, and I’m not very happy with her. It was awful the last time I went to the ER by ambulance, as once they had the blood test results and they were clear, I was told to go home. (No food first). It was 5am, and I had the beginnings of a migraine. I had to go home by taxi, as I live on my own.

I don’t have a BP cuff, but I know it varies a bit.

So do you think my symptoms seem like they could point to GCA?

[PMRpro Ambassador in reply to Harpgirl]

Not necessarily GCA, it is possible though they aren't all typical of GCA, but there is something going on that your GP may not have identified and might be due to the vasculitis part of PMR/LVV/GCA. But without expert input and the right imaging it is difficult to say.

[Harpgirl in reply to PMRpro]

Thank you for your help!

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro, you do need further investigation .....and if it, or similar, happens again and you need to go to ER - please impress upon them the seriousness of possibility of GCA and sight loss.

I know it’s difficult when you live on your own, but if you don’t fight for yourself, no one else will.

Please keep us informed.

[Harpgirl in reply to DorsetLady]

I’m going to my doctor on Tuesday, and if I don’t get anywhere with her then I will look for a different doctor.

I will also take your advice if anything like this happens again, And I’ll phone for the ambulance.

Many thanks! I will definitely keep you informed