Symptoms

[Bro-]

PMR or GCA.?

I have been sick for 25 days now thought it was Covid flu like symptoms aches and pains. Went for many Covid test came back negative then Jaw pain and a severe tingling headache and scalp tenderness -numbness in my feet and hands. After lots of testing and bloodwork it came back as PMR - But I don’t really have the joint and muscle stiffness I have all GCA symptoms but that was not diagnosed is anyone in the situation that can help me out? I started 60 mg of prednisone nine days ago the jaw pain went away but the headache and tingling is debilitating!!!Would love to hear what other people are experiencing with both of these auto immune diseases

[SheffieldJane]

Well thankfully they’ve got you on a GCA dose whatever they said about PMR. GCA is normally diagnosed by a temporal artery biopsy or a specialised ultrasound scan. However there won’t be much to see now that you are on high dose Pred. A number of people do need more than 60 mgs to get control of the inflammation. You do need to see a Rheumatologist who understands this condition, as you probably know your eyesight could be at risk. What kind of tests have you had? I do agree that it sounds like typical GCA. If all else fails seek emergency attention at the hospital.

[Bro- in reply to SheffieldJane]

Thank you! Your absolutely right they aren’t doing the biopsy now because I’ve been on the prednisone. The odd thing is my inflammation levels are not raised but bloodwork diagnosed PMR - started with jaw then went right to GCA symptoms. I’ve had a catscan and blood work.After several trips to the ER I’m In the process of seeing a Rheumatologist. I also have a brilliant eye doctor .

[DorsetLady PMRGCAuk volunteer]

Hi,

As S/Jane rightly says it does sound like GCA.

Incidentally, the blood test doesn’t “come back as PMR” specifically - it just shows raised inflammation in the system. Your symptoms then lead to a diagnosis plus other tests.

On 80mg I found my headaches continued about two weeks, but as I had already lost sight in one eye never sure if they were totally GCA or a combination of the illness and eye strain.

As stated you may need more than 60mg to get completely under control, so please contact whoever diagnosed you for follow-up. If not possible, then A&E please.

[Janstr]

You can have GCA without PMR & although they haven’t told you of that diagnosis, they must suspect it as they have started you on 60mg of Pred. The starting dose for PMR is much lower. I started on 40mg with PMR and GCA, but that didn’t work on my headache either. The rheumatologist added aspirin to the mix, which i understand is now not recommended for GCA but either that or the longer time on Pred did work. I didn’t have numbness in my feet and hands

[Bro- in reply to Janstr]

I was just thinking about asking about aspirin. I’m in the process of seeing a rheumatologist! How long did it take for your headaches to subside? I’m on day 23 and they may up my prednisone to 100. Which I’m not happy about because of my side effects. Icing my head helps but Tylenol isn’t doing anything - glad you’re feeling better!

[Janstr in reply to Bro-]

It took a few days. My headache was low grade, but constant.

[Hidden]

Morning, I was diagnosed with PMR last Dec 2109. Started on usual dose of 15 mg reducing two weekly. I tapered to 8 mg when GCA kicked in. Immediately put on 40 mg, but unfortunately, told to still reduce two weekly and by 10 mg, which is too fast and too much of a reduction, which I've leaned since joining this Forum. Exactly the same symptoms that you're experiencing. However, the tingling headache I had for months before PMR was diagnosed....I think I had GCA at the same time but it wasn't diagnosed. It was when I started to get a painful jaw (claudication) top back teeth ached and tender head that I defo knew it was GCA.

Please don't reduce too fast. I'm reducing by 1 mg monthly now and so far got down to 10.5 mg.

Good luck

Anne

[Bro- in reply to Hidden]

Good Morning! I started at 10 mg now up to 60mg. If my symptoms don’t start to subside I’m going up to 80. Scary because the side effects are awful. But I need to feel better ! Thank you for the advice on tapering and I also had tingling for months before diagnosed my PMR went to GCA overnight but it was too late for biopsy since I was already on 8 days of prednisone

Hope you are feeling better

[Hidden in reply to Bro-]

Yep, same for me, no biopsy due to having been on Pred too long. We both know that's what is was though even though I was sent home from A&E when I went up there with two of the symptoms. Doctors just don't seem as though they've been trained to diagnose PMR/GCA.

[PMRpro Ambassador]

Exactly how did a blood test say PMR and not GCA? There is no definitive test. The initial diagnosis is a clinical one - on the basis of symptoms supported by blood tests. And the only blood tests that signify anything are the inflammation markers, and even they don't rise in about 1 in 5 of patients. But if they are saying more pred - I think someone has got their wires crossed. No PMR patient would be put on 60mg and certailny not 80mg.

8 days of pred is not necessarily too long to get a positive biopsy - people have had a positive biopsy after weeks. It is just the likelihood of a positive is reduced.

[Bro- in reply to PMRpro]

I’m not really sure? I’m just as confused - maybe when the dr told me he said PMR/GCA is what he meant. But considering I was 54 he wasn’t believing it and put me on 10 days of antibiotics thinking maybe Lyme. That didn’t work then the GCA symptoms soared so I started prednisone at 10mg now I’m on 60mg. My dr and my brilliant eye dr said the biopsy wouldn’t do much since I have 8 days of prednisone in me? I had a cat scan and in the process of seeing a rheumatologist. Are you saying bloodwork doesn’t show PMR / GCA? Now I’m really confused.

[PMRpro Ambassador in reply to Bro-]

Blood work shows inflammation being present in the body - but the markers used are very non-specific and can be raised for a load of different reasons. There is no specific test that says "this is PMR", "this is GCA" - that is assessed on the symptoms and 1 in 5 patients with PMR or GCA don't have raised levels at all. There is nothing besides PET-CT and certain ultrasound that will show it is most likely PMR, there is an ultrasound test that shows inflammation in the temporal artery and also the brachial artery (in the arm pit) which is linked to GCA and large vessel vasculitis. PET-CT is usually affected more quickly with pred.

But otherwise they seem to have got a handle on it if they are working on it being GCA