Trigger for PMR

[Swizzly]

Is the forum aware that a tumour or similar was the trigger for PMR in someone?

My rheumatologist sent me for tumour screening, a lung X-ray and a colonoscopy.

Or is the cause mostly unknown?

[PMRpro Ambassador]

PMR isn't the disorder itself, it is the name given to a set of symptoms caused by an underlying disorder and there is a range which includes some cancers, The diagnosis of PMR is what is called a differential diagnosis - you (should) rule out all the other potential causes of such symptoms and at the end you should have a much reduced set of options.

Your rheumy is being very thorough with his differential diagnosis - lucky you!

emedicine.medscape.com/arti...

[Swizzly in reply to PMRpro]

Thank you for the link PMRpro😊

I asked this question because there are so many people here in the forum who struggle with PMR for years and during this time the real cause could never be found?

[PMRpro Ambassador in reply to Swizzly]

If you struggle for years - as I suppose you could say I have - then some of the potential other causes have plenty of time to manifest. My PMR definitely isn't the knee osteoarthritis I was told I had, or a malignancy would have been found by now because I would have been sicker, no real signs of inflammatory arthritis damage though that now is on my diagnosis as it makes some of the admin stuff more straightforward and there is signs of something in sline and pelvis - and suddenly anything for rheumatology no longer has a co-pay since there is a coding for that, there isn't one for PMR. The longer you have PMR, the more likely other causes will be found if they exist.

Hope Switzerland does better today than Scotland did last night!!

[Swizzly in reply to PMRpro]

As you already mentioned, we cannot turn the wheel back and make the best of it 🍀

Hopp 🇨🇭Schwiz 😃

[Biba5]

I had a large growth in right upper lung, found incidentally on a c-spine scan after a fall in January 2023. Petscan pointed to cancer so it was removed February 2023. Full biopsy revealed not cancer but Non TB Mycobacterium Avium. That was the only good news last year. in April I had a thunderclap migraine, sky high BP, called an ambulance, admitted to hospital for 3rd time, lumber puncture was clear but bloods came back with C-rp of 216, so immediate 60mg day prednisone and urgent rheumy appointment. He said I was difficult and confusing case, two separate temporal biopsies came back negative, but I suppose they would on such a high dose of steroids. Anyway, to cut to now, I tapered to quickly and was in immense paid by Xmas. I started back on 20mg, but weekly bloods have seen a rapid increase inC-rp and ESR levels. So now back on 40mg. GP referred me back to rheumy and 2 days ago I had a temporal ultrasound. The technician said all looked ok, but then again I am on 40mg day. By the way, I have been diagnosed PMR, also have Post polio, FMS, CFS, and query GCA. So, a long way of saying, did the removal of RU lung set off the PMR/?GCA or was it a coincidence. The fall I mentioned was the 9th in 18 months but the only one where I fainted. I am allergic to all anti inflammatory drugs so have cbd oil on script (only way to get it in NZ and soooo expensive, I take for the shooting pains in my head and neck and shoulder pain. Was going to wait to post after I see rheumy at hospital, but then saw your question. Will post update hopefully next week.

[PMRpro Ambassador in reply to Biba5]

How long after the lung surgery was the CRP still raised? There woujd be a lot of healing damage that would raise the CRP.

[Biba5 in reply to PMRpro]

The surgery was 16/2/23, I don't know what CRP was at that time, but the thunderclap migraine that took me to hospital where CRP was so high was in mid April. I have asked my gp and rheumy whether they think there's a link between surgery and PMR but they didn't really have an opinion

[PMRpro Ambassador in reply to Biba5]

That's longer than the surgery CRP would persist I think. But the stress of the surgery could well have been the final straw that sent the immune system haywire. Can't prove it - but very possible.

[Biba5 in reply to PMRpro]

I think there is a connection, even with my PPS, FMS and CFS going on for some years, I was active and had learnt to control any flares. But this has really knocked me. I hate taking the prednisone on top of all my other meds, but at 76 and living alone, I am not ready to give in! Had a comprehensive eye test last month, new prescription and have shaded lenses to help with migraines. Use drops daily for dry eye. otherwise my sight is ok. seeing a different rheumy next week... wonder if I will get different opinion. will do an update.

[PMRpro Ambassador in reply to Biba5]

More than likely! They will grab at the other diagnoses - ask 2 rheumies and get 3 opinions!!!

[Biba5 in reply to PMRpro]

so an update my bloods from Friday are back, all over the place, WBC and RBC are not normal, CRP and ESR still to high and various others out of whack too. my patient notes say 0 evidence of GCA. Was feeling ok until an afternoon phone call from one of Auckland's larger hospitals to say the Rheumatologist wants to see me this Thursday as a priority one patient! So my thoughts are that the ultrasound Technician and my gp are not taking into account that I had been on 20mg bd for weeks and last week was doubled to 40mg bd. And the rheumy can see right through that, or something going on with the bloods, or he wants to try me on different meds. Who knows. Only 2 days to wait. Starting to worry now. It's a different specialist. The young Canadian rheumy I saw last year resigned and went back ti Canada, this new to me dr is more senior.

[PMRpro Ambassador in reply to Biba5]

"0 evidence" - what were they looking for after the patient was on 40mg for weeks!!! And at 80mg - no wonder your bloods are all over the place. Any pred sends WBCs up and haywire, tends to send RBCs up, and yet your CRP and ESR are still high.

All the best for Thursday - and don't panic too much, he'd had sent for you even sooner if he was worried. Let us know what he says.

[Biba5 in reply to PMRpro]

sorry, that was 20mg for weeks, doubled to 40mg bd. Utrasound/latest bloods were Friday 14th, results Monday 17th, ph call for Priority 1 appointment Tuesday 18th, appointment tomorrow Thursday 20th. All NZ time. Trying not to stress. Taking my 21 yr old amazing granddaughter with me. Last year, when I was so ill, Kate applied for driving licence so she could drive me to appointments etc. She is great driver, also has steel trap for memory (is undergrad double degree at university, started at 17) she will recall details that I will forget before we leave the building! Making a list of symptoms and questions. AA being high on the list. GP wants me to take again but I hate it, I already have heartburn and AA makes it so much worse. Going to ask for a bone density test, had one about many yrs ago, can't find results, had health insurance then, but not now. Anyhoo, thanks for being here, I find advice and fellow PMR/GCA comments so helpful. Advised to join by a Kiwi friend who lived in London for some years, rare form of blood cancer, specialist at St Georges advised her to join up when she came back to NZ to live. Best advice I had last year x

[PMRpro Ambassador in reply to Biba5]

If you have heartburn anyway that should mean no AA. Risendronate MAY be better - but there are alternatives that don't increase your risk of ending up with something worse. But there are more important things this week - good luck at the appointment.

[AtopicGuy]

The immune system detects germs and mutated cells in all of us, every day. It seeks them out and kills them off. Occasionally, mutated cells survive and multiply, and that's called cancer. Occasionally, germs survive and multiply, and that's called an infection. Sometimes the immune system goes haywire and attacks healthy tissues: that's called autoimmunity. Evolution aims to make everybody's immune system subtly different, to minimise the chance that one disease can ever wipe out the whole species.

[andyduudz]

hello Swizzy, , the only issue i had, < was when your on the CT machine, like any other CT scanner, is when they inject that dye, into your bloodstream, , for me at first i got that urge , when your stomach is doing summer salts, and the pump a gas into you,, you need the loo afterwards, , to let it all go, but the nurses, was great at my hospital RVI in newcastle