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Author Topic: the medications to "help" us  (Read 3429 times)
CalamityEC
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« on: January 20, 2014, 10:44:06 AM »

So, I'm sitting in my basement, alone again since my parents are both at work and my boyfriend, bless his heart, took my car into the shop.  My parents decided my Christmas gift was to install a seat warmer in my car.  I know, I know. Woe is me.

But here's the thing bugging me.  I'm alone and bored in my basement (to be fair, both my room and family room are on this floor) because I've gotten stress fractures in both my feet...again. Seriously. I can't even go upstairs to eat or help my mom make dinner.

So why am I posting this on here?  Because of my lifelong relationship with ...*drum roll* prednisone.  And my early onset osteoporosis.  I'm SO SICK of walking through Target and getting a stress fracture. Or, putting on a shoe and getting a stress fracture.  Does anyone else get tired of the multitude of side effects from a lifetime of drugs?  Seriously.  I'm trying to get through the work up for a new transplant so THEN I can go see a specialist about metal rods in my feet (I'm not even 30 yet.  I've already done the artificial hips route).

 :rant;
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"In three words I can sum up everything I've learned about life: it goes on." ~Frost

"Sometimes I've believed as many as six impossible things before breakfast." Alice's Adventures in Wonderland
jeannea
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« Reply #1 on: January 20, 2014, 01:59:29 PM »

I hate my Prednisone but at this point I can't stop taking it. I have osteoporosis but not as bad as you. Have you received any treatment for it? Any of the medicines? What do your docs say?

Yes, I get tired of "side effect land." For me the hand tremor is very bad. It interferes with eating, drinking, tying my shoes, etc. What can I do? Nothing. I just wish my family wouldn't laugh at me about it.
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ToddB0130
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« Reply #2 on: January 20, 2014, 05:09:38 PM »

Sorry to hear of your issues and I hope some of this gets worked out soon.

Wondering about the levels of prednisone you are taking.  I am down to 5MG once per day since my transplant two months ago.

Thanks for any information.
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No day but today
KatieV
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« Reply #3 on: January 20, 2014, 07:35:37 PM »

Wow!  I hope your fractures heal quickly (the steroids probably prevent that though).

I received my second kidney transplant on November 16th.  By the middle of December, I was rejecting it.  As part of the treatment, I was given several large doses of steroids.  That caused Avascular Necrosis.  Is that what caused you to need hip replacements?  I was told I need to get off them ASAP or I'd be looking at needing hip replacements in a few years.  I'm not yet 27.   :(  Thankfully my transplant surgeon is willing to take me off it.  I'm on 15mg a day now.

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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
CalamityEC
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« Reply #4 on: January 21, 2014, 04:01:51 AM »

I hate my Prednisone but at this point I can't stop taking it. I have osteoporosis but not as bad as you. Have you received any treatment for it? Any of the medicines? What do your docs say?

Yes, I get tired of "side effect land." For me the hand tremor is very bad. It interferes with eating, drinking, tying my shoes, etc. What can I do? Nothing. I just wish my family wouldn't laugh at me about it.

I used to have that problem too.  In undergrad, I was trying to get a piece of chicken into my mouth.  My hand shook badly and the chicken ended up hitting some poor freshman in the head...oops?  I get the hand tremors, but not like you.  Have you mentioned to your family that the laughing is getting a little old?  Or some sarcasm.

You're right.  There's nothing to be done about the side effects.  But sometimes ranting about it...well...it does help.
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"In three words I can sum up everything I've learned about life: it goes on." ~Frost

"Sometimes I've believed as many as six impossible things before breakfast." Alice's Adventures in Wonderland
CalamityEC
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« Reply #5 on: January 21, 2014, 04:02:49 AM »

Sorry to hear of your issues and I hope some of this gets worked out soon.

Wondering about the levels of prednisone you are taking.  I am down to 5MG once per day since my transplant two months ago.

Thanks for any information.

I've been down to 10 mg every other day for as long as I can remember.  I find the every other day cuts down on the nausea :)
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"In three words I can sum up everything I've learned about life: it goes on." ~Frost

"Sometimes I've believed as many as six impossible things before breakfast." Alice's Adventures in Wonderland
CalamityEC
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« Reply #6 on: January 21, 2014, 04:05:26 AM »

Wow!  I hope your fractures heal quickly (the steroids probably prevent that though).

I received my second kidney transplant on November 16th.  By the middle of December, I was rejecting it.  As part of the treatment, I was given several large doses of steroids.  That caused Avascular Necrosis.  Is that what caused you to need hip replacements?  I was told I need to get off them ASAP or I'd be looking at needing hip replacements in a few years.  I'm not yet 27.   :(  Thankfully my transplant surgeon is willing to take me off it.  I'm on 15mg a day now.

Ha, no, suprisingly it WASN'T AVN.  Osteo arthritis and dysplasia of the hips (I had so many health issues that nobody realized my hips were misshapen when I was a baby)...when I was 23 one day my hip locked and I couldn't walk to classes or go to work (I was 22)...good luck getting off them!
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"In three words I can sum up everything I've learned about life: it goes on." ~Frost

"Sometimes I've believed as many as six impossible things before breakfast." Alice's Adventures in Wonderland
Rerun
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Going through life tied to a chair!

« Reply #7 on: January 21, 2014, 06:21:09 AM »

After 17 years with a transplant (good thing) ...and 17 years of 10mg a day... I could never get off prednisone.  I'm still on 2mg a day because my adrenal glands were suppressed for so long they never came back to normal function.  Two mg a day is better than going without.  Prednisone does have a double edge sword. I've had so many stress fractures I don't even get them anymore.  Scar tissue must have taken over in my feet.  Ha

 :waving; 
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CalamityEC
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« Reply #8 on: January 21, 2014, 09:51:13 AM »

Not getting them sounds...like a dream in a way
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"In three words I can sum up everything I've learned about life: it goes on." ~Frost

"Sometimes I've believed as many as six impossible things before breakfast." Alice's Adventures in Wonderland
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