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March 2015, life changed.

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 5 months ago #56662 by mrsb04
Replied by mrsb04 on topic March 2015, life changed.
Great video Rhoda

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7 years 1 month ago #58393 by rhoda
Replied by rhoda on topic March 2015, life changed.
here we go again. round #?
7

when dana called me with the results, i started laughing, i don't suppose i can bargain my way out of this one?
she laughed, dr says absolutely not.

i was hoping to bargain to only go up to 20 mg pred. not a chance, 60 mg.
actually, he said 60 - 100 mg, and of course i opted for the lower dose. i'm guessing he knows enough to give me a choice, so that i'll pick the one that he truly wants.

and then of course i started grumping to my coworkers. 60 mg. that'll take forever to taper down to 5 mg. i don't want to start all over again.
(i still think 20 mg would do the trick. it would give it a gentler rise. my opinion)

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 1 month ago #58394 by Sandi
Replied by Sandi on topic March 2015, life changed.
Rhoda:
You do not have to do it. I got to that point too...I was sick of the 60 mg's and starting over all the time. I finally spoke up and said that I wasn't going to do it and I told him that I would do 20 mg's. I wanted to see what that would do since I was pretty responsive to Prednisone. It got my counts into a safer range, but not as high as the 60 and it didn't last long. I tried that a few times until I got sick of steroids altogether and moved on to another treatment.

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7 years 1 month ago #58395 by rhoda
Replied by rhoda on topic March 2015, life changed.
we've had our battles. i prefer to call them bargaining.
last week was 27. he wanted me to go up then. i told him no, i want to stay on the 5 mg.
ok, well, then, redraw in a week.

and now, 7 today.
so, i'll listen to him. this time.

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  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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7 years 1 month ago #58398 by mrsb04
Replied by mrsb04 on topic March 2015, life changed.
I'm with Sandi on this one 20mg is as high as I will go. I'm sick and tired of Pred increases and subsequent tapers.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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7 years 1 month ago #58406 by Sandi
Replied by Sandi on topic March 2015, life changed.
You can only do that for so long. It's too hard on the body and the mind.
My office contact's name was Dana too. I loved her!

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7 years 1 month ago #58412 by rhoda
Replied by rhoda on topic March 2015, life changed.
my dana's great too!!

i sent you a pm.

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7 years 1 day ago #58805 by rhoda
Replied by rhoda on topic March 2015, life changed.
mom's been making dandelion salad the past several weeks. lots of it. so today, my numbers came back wnl. whooohoooo!!! whether it was the dandelion or not, i don't know. but... i ate dandelion leaves on my cheeseburger this evening. how bout that?

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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


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