1. < Polymyalgia Rheumatica (PMR)

A low place tonight

Posted by paulagcl @paulagcl, Jul 7, 2023

It finally hit tonight, that my life has completely changed. I am considering redoing my financial plan and spending much more to live where I want to for the next couple of years and then enough is enough. I'm lucky that I have done almost all I wanted to in my life.
I had a wonderful husband, have a wonderful son and family, and followed my interests and abilities in art and music both as a profession and as a center of my life. People keep telling me I am strong, but I feel exhausted now, three months into this diagnosis.

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krueg | @krueg | Jul 13, 2023
In reply to @bohobama "Sorry you feel so blue. I had reached that point just before I was diagnosed with..." + (show)
@bohobama

Sorry you feel so blue. I had reached that point just before I was diagnosed with PMR and started treatment with prednisone. It was like a miracle for me. Suddenly I went from feeling hopeless despair to my old, pre PMR self. Yes, I understand there are side effects but so far I haven’t experienced any and am being proactive taking supplements as needed to help prevent bone loss, hair loss etc. There’s a new biologic out too for PMR. Maybe talk to your PCP about it if you don’t want to take pred. Best of luck, hang in there.

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Please share what supplements you sre taking for bone loss prevention and hair loss.

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maggie14 | @maggie14 | Jul 13, 2023

Biotin helps prevent hair loss. For me prednisone seems to make everything grow more - nails and hair including facial hair.😕😅

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bohobama | @bohobama | Jul 13, 2023

I’m taking biotin for my skin and hair. For bone loss I’m taking a supplement every day that has magnesium, calcium and D3. Plus extra D3 by itself and Vit C to hopefully offset the lack of natural immunity.

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bohobama | @bohobama | Jul 13, 2023
In reply to @paulagcl "I'm taking a biologic along with the prednisone, the hope being to wean me off the..." + (show)
@paulagcl

I'm taking a biologic along with the prednisone, the hope being to wean me off the prednisone eventually. What supplement do you take for hair loss?

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Biotin although I haven’t had any hair loss and hope I don’t. However my forearms are a disaster now because my skin has become tissue thin. Wearing elbow length fingerless gloves my daughter got me to try and protect myself from looking like I’ve been in a fight with a grizzly bear. She found me some cream for fragile skin too so maybe it will help. The photo shows how dreadful my forearms and tops of my hands are. My other arm is actually worse than this one. I’m embarrassed to go out in public but I live in the Deep South and it’s soooo hot and humid—-too hot and humid for long sleeves right now.

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1 reply
bohobama | @bohobama | Jul 13, 2023
In reply to @bohobama "Biotin although I haven’t had any hair loss and hope I don’t. However my forearms are..." + (show)
@bohobama

Biotin although I haven’t had any hair loss and hope I don’t. However my forearms are a disaster now because my skin has become tissue thin. Wearing elbow length fingerless gloves my daughter got me to try and protect myself from looking like I’ve been in a fight with a grizzly bear. She found me some cream for fragile skin too so maybe it will help. The photo shows how dreadful my forearms and tops of my hands are. My other arm is actually worse than this one. I’m embarrassed to go out in public but I live in the Deep South and it’s soooo hot and humid—-too hot and humid for long sleeves right now.

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My horrible arms.

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krueg | @krueg | Jul 13, 2023
In reply to @bohobama "I’m taking biotin for my skin and hair. For bone loss I’m taking a supplement every..." + (show)
@bohobama

I’m taking biotin for my skin and hair. For bone loss I’m taking a supplement every day that has magnesium, calcium and D3. Plus extra D3 by itself and Vit C to hopefully offset the lack of natural immunity.

Jump to this post

Thanks for sharing. I'm taking vitamin d3 (3000 iu'')getting at least 1200 to 1500 mg calcium mostly from food but i do take a supplement if i need to to get to that number. 400 mg of magnesium and 3mg of boron plus a multi vitman. I did take 500mcg vitamin c during he winter. I sure hope this works and keeps my bones from getting worse as i do have osteoporosis already. I will find out this September when i have my next dexa scan. Keep your fingers crossed

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marymckeith | @marymckeith | Jul 13, 2023

I have had so many of those same thoughts about any future I might have. It has made me kinder and gentler to myself and more willing to live in the moment and to take more risks if it makes me happy

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marymckeith | @marymckeith | Jul 13, 2023

I have the same thoughts and feelings after 4 months.

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paulagcl | @paulagcl | Jul 13, 2023

Well, that's inevitable. It's a shock psychologically, emotionally -- well, in every way. 4 months isn't very long. I'm at about that time myself.

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paulagcl | @paulagcl | Jul 13, 2023

Christiane Wolf is the author I referred to -- How to Outsmart your Pain I think is the right title.
She's exceptionally clear, I think, on the mindfulness idea. And she's big on self-compassion.

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