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Author Topic: Good news, along with a Prograf question...  (Read 2935 times)
kellyt
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« on: May 17, 2010, 02:56:09 PM »

Recent lab work done last Thursday shows my creatinine at 1.1!!!!   Thank the Lord.

Question:  My Prograf is high again (10.4).  I told the nurse I felt like it might have been, cause I'm getting those hot flashes after my evening dose (feels like I have a sunburn), as well as I'm having lots of joint and body aches.   Does high Prograf cause body and joint aches?  Also, the RLS at night.  Thanks.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
chris73
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« Reply #1 on: May 17, 2010, 03:39:52 PM »

Hey kelly...I just had my 2yr check up and I have been having a lot of bone aches,enough to bring tears to my eyes. The Dr told me it may be the prednisone so she lowered it from 10mg to 7.5,it seems to help a little ,still have a little ache here and there. hope this helps....Chris
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11/10/07 esrd
12/07/07 permcath placed
dialysis started 2 days later
transplant 4/15/08  from close friend and coworker  of 12 yrs. Thanks Jeff!!
cariad
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« Reply #2 on: May 17, 2010, 04:25:40 PM »

Recent lab work done last Thursday shows my creatinine at 1.1!!!!   Thank the Lord.

Question:  My Prograf is high again (10.4).  I told the nurse I felt like it might have been, cause I'm getting those hot flashes after my evening dose (feels like I have a sunburn), as well as I'm having lots of joint and body aches.

Me too! (But you knew that already, didn't you?)  ;) Congrats on the awesome creatinine, Kelly!

Chris, really, Prednisone can cause bone aches? This is new information to me. (Pardon my surprise, but after about 3 decades on prednisone, I thought I knew every trick the little devil could pull.) I always assumed it would ease pain, being an anti-inflammatory and all. I hope you find a way to eliminate that pain completely, it sounds just awful. Thinking of you!
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

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kellyt
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« Reply #3 on: May 17, 2010, 08:42:57 PM »

I knew about the Prednisone, but I took my last Prednisone on April 30th.  I would love nothing more than to blame this on Prednisone, but I've been hurting for months now.  As I sit here and type my left hip is killing me.  I can barely pick stuff up off the floor because my hands hurt when I grasp.   :(

We'll get this figured out!   :grouphug;
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
chris73
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« Reply #4 on: May 18, 2010, 02:54:25 PM »

Cariad,This is what was told to me at my last visit to the tx clinic,the head of the clinic is the one who lowered my prednisone dose from 10mg to 7.5mg she said this should help.some pain here and there not bad as it was..Thank you for your concern.               Kelly maybe its one the other drugs, need to express your concern with the Dr's and maybe a drug adjustment will start will make you feel better.  God Bless! Chris
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11/10/07 esrd
12/07/07 permcath placed
dialysis started 2 days later
transplant 4/15/08  from close friend and coworker  of 12 yrs. Thanks Jeff!!
Run8
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« Reply #5 on: May 18, 2010, 03:03:39 PM »

OK, so does it make every joint in your body pop? Mine now do. It sounds like my body is breaking whenever i sit, knell or walk.
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Sunny
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Sunny

« Reply #6 on: May 18, 2010, 03:07:51 PM »

Kelly,
You mention your last prednisone was April 30th.
When I was taken off prednisone I had severe bone,muscle,and joint pain like you describe. The only other drug I was also weaned off was cytoxin 1 mth prior to the prednisone.
It was the worst pain I ever experienced and lasted three months. It is the response of the body getting used to not having it, sort of like withdrawal. Just a thought.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
kellyt
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« Reply #7 on: May 19, 2010, 01:33:23 PM »

Yes, my last prednisone dosage was taken on April 30th, but I was dropping down 1 mg a month for a few months.  Also, my pain has been longer than that.  Dropping 1 mg a month is slow enough to avoid the pain caused by coming off Prednisone too quickly, but you may be right, Sunny.  My back has hurt for years, on and off, and I was under the understanding that I had a herniated disc.  I had an MRI in March and was told that it is not due to a herniated disc.  ????  I'm thoroughly confused on that matter and I plan on discussing that with my doctor, as well.  I'm going to go pick up the MRI films before my appointment.

My joints don't "pop", they just ache and are painful when I move and such.  For example, in my wrists they hurt when I grab or pick stuff up (also hurts in my knuckles).  My hips aches/hurt when sitting, standing, laying down, etc.  Same with back.  Knees ache/hurt the least amount of time, but will hurt periodically.  Shoulders hurt pretty much constantly, but mainly when I go to bed.  And elbows are also sore and achy.  Oh yeah, and neck and feet.
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1993 diagnosed with glomerulonephritis.
Oct 41, 2007 - Got fistula placed.
Feb 13, 2008 - Activated on "the list".
Nov 5, 2008 - Received living donor transplant from my sister-in-law, Etta.
Nov 5, 2011 - THREE YEARS POST TRANSPLANT!  :D
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