Just a thank you: I continue to be amazed at the... - PMRGCAuk

PMRGCAuk

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Just a thank you

nallufl24 profile image
9 Replies

I continue to be amazed at the knowledge I have learned from some of you (PMRpro, DorsetLady, Kendrew, SheffieldJane, just to name a few.) I have learned so much about a disease I never heard of before. I’m only sorry I didn’t find you til I was 3 months in to GCA. I followed my doctors orders exactly and relapsed at 10 mg. I think that might have not happened if I knew about you. I was so happy reducing prednisone so quickly until it all came crashing down.

I’m angry at all these doctors who seem to know so little. I realize they are only human and can’t be all knowing but at times I suffered needlessly because of their ignorance. I was tired of rheumatologist telling me many of my side effects were not from prednisone, GCA or Actemra only to find out on here that many others suffered the same things.

Anyway, I have learned so much and still have a long way ahead.

Merry Christmas to all of you!

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nallufl24 profile image
nallufl24
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9 Replies
PMRpro profile image
PMRproAmbassador

Yup - reducing fast is wonderful. Until it's not!

I do feel a bit sorry for doctors - they are expected to know things without even trying on the t-shirt. But they really shouldn't be so emphatic about what is due to what unless they REALLY know.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Thank you, and you’re welcome 😊

piglette profile image
piglette

I so agree. I hear people coming on to this forum having just been diagnosed with PMR and being told to reduce really quickly in spite of being in pain and you know they are going to be in agony just because we trust out doctors to give us correct information.

SheffieldJane profile image
SheffieldJane

💖 happy Christmas to you too. Pass it on! Xxx

LemonZest11 profile image
LemonZest11

Hear, hear!!

Broseley profile image
Broseley

Thank you for putting into words what we are all thinking.I too am grateful for all the advice on here and I'm sure my gratitude is echoed by many more.

Happy Christmas everyone!

Bennijax profile image
Bennijax

we are very fortunate to have patient experts who care enough to be for and with us everyday.

Alebeau profile image
Alebeau

A big thank-you to all on this forum from me as well

Merry Xmas 🎅

Suet3942 profile image
Suet3942

and a big thank you from me as well.

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