Hope all are well. I'm involved in management of a nonprofit, here in the U.S.
We work with and advocate for survivors of nonconsensual experimentation, here in the U.S. and internationally. It can be demanding and sometimes, I lack the time to keep up with groups, blogs and correspondences that are important to me.
GCA is a rare disease, here, with little support. I have some vision loss from GCA, hopefully no more. I'm on a maintenance dose of medrol at 2 mg. s and have been hospitalized for flares, when it is " upped". Would like to stay at two until I'm off of it, if possible.
I agree with PMRPRO that it is an autoimmune disease, and I find it a difficult one.
Wanted to share that I'm back to 81 mg.s of aspirin, and off of the apixaban, blood thinner (no more clots).
Feeling better on the aspirin, seems to help the headaches.
I hope all are well and Happy Mother's Day to everyone (men members, also!).
Best, Whittlesey
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Whittlesey
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I think we've 'met' here before, your name rings a bell. It's interesting to read your post and learn about the real people behind the avatars!
Sorry you've had a bad time with PMR / GCA. I can only imagine how it must be for you, and it makes me feel very fortunate not to have those complications.
Thanks, Mark! Yes, it is good to put real people behind the avatars.
Yes, I am still amazed at the many Dr.s who know so little about these diseases and give advice or suggestions, which not only don't work or act counter.
We continue! Thanks for your positivism -- much appreciated and continued good luck in dealing with these.
Thanks Whittlesey - and for the Mother's Day wishes which applies to me but probably no-one else! Most of mainland Europe shares the date with the USA but in the UK Mothering Sunday has been a celebration of mothers for a few hundred years! It is the 4th Sunday in Lent - an Anglican feast day to relieve the fasting period before Easter - when people working in service or otherwise away from home went home to see their mothers.
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