Apologies if this appears twice. Not so good with technology.
I was diagnosed with pmr in January. I have had sinus pain off and on for years. Usually it just goes away. Being aware of gca I mentioned my concerns to my gp. He poo pood my concerns and said if I could feel a pulse at my temple and it didn't hurt to brush my hair I was worrying unnecessarily. My bloods have come back as normal.Prior to pmr I very very rarely went to the doctors. Now I am becoming paranoid 😱. Sorry.
I am into my 8th month. I assume you are on prednisone. Do not be ashamed of feeling paranoid because I spend half of my time trying to figure out if the pain is from the silly drug or PMR. This is not a fun journey but this site will offer you some comfort.
Thank you. 😊
Hi,
Do you mean your blood markers were normal at diagnosis? If so, that’s not particularly unusual - approx 20% patients aren’t.
The key are the symptoms.
Please don’t be paranoid about GCA, it is not a given that because you have PMR you will get GCA. But is it something to be aware of, so just be sensible about it. That’s not easy at the beginning I know because every new pain has you worrying, but worrying will just make things worse.
Just monitor your conditions, ask questions of this forum, and have a bit of trust in your GP.
Have a read of this as well, then you may have more of an idea of what to expect -
healthunlocked.com/pmrgcauk...
Thank you for your good advice and information. It is such a comfort having such a supportive group to talk to.
Excellent advice as ever from DorsetLady. I’ve been on a long PMR/GCA journey for six years now. I’ve asked questions here but more importantly read as much as I can, the search button is superb. There are some amazing experienced people in this group who are always on hand to allay fears, answer questions wisely and reassure . My mantra, Keep Calm and Carry On.
As "just" a PMR recoverer my first year was spent in a constant worry about GCA. Every headache, lymph nodes being swollen and my sinuses made me panic. My sinuses still constant nuisance but have recently started using those saline sprays they have for babies and it has really helped. Just coming up to 4 years in and occasionally swollen glands in neck and head make me miss a step.
At the end of the day you need info about what could happen etc. I talked to rheumy about occipital lymph nodes being sore and poo pooing it is exactly what he did. A lot of people with PMR haven't exactly been at the drs a lot pre DX as far as I can tell. Many did stressful jobs, had stressful lives and pushed themselves to physical, emotional and psychological limits and then popped when their bodies misbehaved. Once you give in to some rest, accept that you MAY be in for the long haul and that paranoia about GCA will probably be like will o' the wisp.🌻🤔💐
Thanks for that. Guess I will have to try to learn to chill🛌 Glad to know I'm not alone.
I wish it was as simple as your doctor seems to think. I understand and share your worry. The jaw claudication is supposed to be a particular indicator - ache whilst chewing. None of this is very reassuring because we know of people who had no warning at all before their sight was affected. I hope we are the last generation to have this hanging over us with no definitive test for the disease freely available.
I am more prone to paranoia in general with Pred which doesn’t help. eg oh so it’s only me then? X
Sorry no help, just sharing, you know what to do.
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