New. definitive diagnosis

[galp]

Hello to all

Its been a long time since I have been on the site, and things have turned

I was after 1 1/2 years off pred, and feeling great , for one week.

Then was down with UTI ( mrsa) and had episode of high bp and high heartrate enough to go to er. Potassium was low ( has happened before )but the ER dr didnt like my oxygen level so did a lung scan.

Discovered enlarged glands in lungs, long story short biopsy showed Sarcoidosis.

It was also first time in my PMR.? journey that my sed and inflammatory markers were thru the roof.

Back on steroids , cough better , no more night sweats, but still short of breath on exertion. That according to pulmonologist will take some time

No one can answer if it was this all along, because never had cough, was no reason to do scan, and symptoms of where pain was was not indicative of sarcoid, until that week after I went off . Acute pain and swelling in ankles as well as cough and fatigue

So I guess I go to Sarcoid thread... Which is not thought to be auto immune, but inflammatory?

Anyway thanks to all for support and wish you all well

Gina

[Ruadh]

So sorry to read of this. What a bummer. Wishing you a speedy recovery - and do pop in to bring us up-to-date. Big cyber (((HUGS))) - Take care.

[galp in reply to Ruadh]

Thank you so much.. hugs are always good, sending one back to you..g

[PMRpro Ambassador]

Sorry to hear that - how they treating it?

You might find this interesting:

ncbi.nlm.nih.gov/pubmed/224...

And no need to go away - please tell us how you get on.

[Purplecrow in reply to PMRpro]

Good synopsis...interesting topic. Brother had the disorder, has since recovered.

[galp in reply to Purplecrow]

Thats good to hear! Thank you

[galp in reply to PMRpro]

Thank you

Very interesting

May seem crazy to some , but in a way a relief to have a proven by biopsy dx. My rheumi was never fully convinced on PMR .

Thanks for continued support

Just got bloodwork back after month and vastly improved

Gina

[PMRpro Ambassador in reply to galp]

No - not crazy at all. Biopsy-proven anything is at least certain and you can work on it. PMR is only a diagnosis of exclusion - it is not certain. That is the one thing we could do with above all.

[galp in reply to PMRpro]

Treating with steroids , Started at 20 decreasing slowly. Said may be on low dose for year or two, Will evealuate after repeat of lungscan in october.

Didnt do well on methotrexate before so not adding that but wanted to

[Purplecrow]

Lot of bad news it seems, so sorry for this turn of events. Best wishes for a quick resolution of acute symptoms.

Sending good energy your way🙏🏽💜

Kind regards, Jerri

[galp in reply to Purplecrow]

How kind thank you and wishing you well

[HeronNS]

I have non-symptomatic sarcoidosis. Only issue seems to have been high Vitamin D level, so had to reduce my D supplement. I'm not so sure sarcoidosis is not also auto-immune. I hope your treatment works really well. Please do drop in from time to time and let us know how you are getting on.

[Jackoh]

Hope you do well galp. Let us know how you get on x

[SheffieldJane]

Sorry to learn this galp. Stick with us and give the odd update as to how you are. It’s all related.