16 years PMR & GC

[ejvb]

I have had PMR & GC for over 16 years. Has any one had it this long?

[PMRpro Ambassador]

Not quite - it is just over 15 years since I can identify my first PMR symptoms. I probably also have GCA, having had brief symptoms normally associated with cranial GCA and more associated with extra-cranial GCA or large vessel vasculitis.

But I don't think there are many of us!!!

[ejvb in reply to PMRpro]

thanks for the note. I guess your right. Not many of us. I went to a rum. Dr. first thing out of her mouth was needed 14 tests. I told her I was tested out. And would no longer need her help. She didn't believe me...... SHE SAID said no one has it for this long and I needed to stop the Pred.

[PMRpro Ambassador in reply to ejvb]

it is said that 5% or so of us have PMR for (probably) life.. My world-renowned rheumy doesn't argue! I have heard of people who have had it over 10/11 years and still got off pred. And of people who have had it 2, 3 or more times. So why shouldn't some of us have it for a long time?

[maria40]

Yes, this is my nineteenth year of PMR and tenth of GCA.

[stellafmdm]

Probably! I had the pain that long but only got diagnosed in 2016!

[Lafontainepam1]

I’ve had mine for 9 years. At first I was treated for tendinitis in the left shoulder, until I went to a rheumatologist and was diagnosed immediately with PMR. Started at 15mg, still on 61/2-7 trying once again to reduce a little at a time.

[yogabonnie]

what dose of prednisone are you on after this length of time..?

[ejvb in reply to yogabonnie]

5mg

[Maryjayne]

I'm in my 9th year of GCA....

[PJarret]

I have had PMR since 2002, but it is periodic and so I have not been on prednisone that long. For this current episode of PMR I am down to 2.5 mg of pred. I am almost pain-free. I exercise at the gym 3X a week and I have been able to lose 65 pounds since bariatric surgery in early Feb. I am doing fairly well for a 72 year old.

I was told that this is mostly a Scandinavian autoimmune disease. It turns out that I am about 80% Scandinavian. Is this true of everyone out there?

[CT-5012 in reply to PJarret]

Never had my DNA done but most of my family came from the North East with the surname Stevenson, so probably. B****y Vikings.

[PJarret in reply to CT-5012]

What are B****y Vikings? Beastly?

[Soraya_PMR in reply to PJarret]

Covered in blood 😉

[PMRpro Ambassador in reply to PJarret]

It isn't really a Scandinavian disease - having Scandinavian genes means you are more likely to develop it and it is more common the further north you go in Europe - or in communities with a strong Scandinavian heritage like Minnesota

[Rosina1871 in reply to PJarret]

I too have Scandinavia roots and also have dupeytrons (sorry for spelling) on both hands which is connected to Viking ancestry

[PJarret in reply to Rosina1871]

I looked Dupuytren's Contracture up. Not a fun thing to have. Blessings.

[Suet3942 in reply to PJarret]

I've got that! And my poor daughter

[PJarret]

I am fourth generation Coloradoan, but with mostly Danish ancestry. We Vikings get around in the world!

[Soraya_PMR in reply to PJarret]

‘Twas your wonderful longships and brilliant seamanship.