| Author |
Message |
Alim
Member
Username: Alim
Post Number: 1
Registered: 04-2012
| | Posted on Friday, April 13, 2012 - 04:06 pm: | 
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Hi! I need help r advice on Prograf vs sirilimous, any ideas....Prograf is giving the shakes and bad headaches! 3.5 months post transpant now.....also does anyone know or been on belatacept?
Thank you! |
CiscoKidney07
Forum Leader
Username: Gregg
Post Number: 5420
Registered: 03-2008
| | Posted on Friday, April 13, 2012 - 05:12 pm: |
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A question--have you let your tx doctors/tx center know? I know that headaches and shakes are kind of common when you are first on prograf simply because your body is not used to it. I still have an occasional headache, but the shakes are pretty much gone. If your shakes and headaches are bad enough, you should say something to your tx doctors. I have no idea what the other drug is that you are asking about. Good luck to you!
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Carl
Member
Username: Carlbullen
Post Number: 37
Registered: 01-2012
| | Posted on Monday, April 16, 2012 - 03:37 pm: |
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Hi Alim,
Have you been offered Sirolimus. I moved to Sirolimus from Cyclosporin (similar to Prograf), and much preferred the change. I too had the shakes on Cyclo, and I had cognitive difficulties after years on it. If you do have the chance I would recommend a change to Sirolimus, though it does bring it's own side effects (sores in the mouth, acne, problems with sperm production) but it likely would sort your shakes and headaches (Prograf is definitely known to have neurological effects - I was on that briefly too and found it horrible; terrible anxiety).
I think belatacept is still an experimental drug isn't it. I remember reading about it years ago. It somehow only targets the specific part of the immune system responsible for organ rejection. I think it must still be in trials and hasn't been released. I at least haven't heard of anyone being on it.
Good luck,
Carl.
Kidney Tx 1989 (aged 10)
Approaching 23 years post Tx
Cyclosporin + BP tabs first 19 years; now MMF + Pred.
(but I'm not defined by the above!!)
Reader / thinker / researcher / web designer |
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Alim
Member
Username: Alim
Post Number: 8
Registered: 04-2012
| | Posted on Monday, April 16, 2012 - 04:05 pm: |
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Thanks. Carl ! I have been given sirilimous today so hopefully it will help. The headaches have been terrible! Because I am an ABO incompatible transplant I still have to stay on a low level of Prograf.
I will let you know how it goes? Might I ask your dosage?
Thanks!! |
BD
Member
Username: Bd1
Post Number: 123
Registered: 03-2009
| | Posted on Monday, April 16, 2012 - 04:22 pm: |
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4yrs post TX and still get headaches and the shakes from Prograf. I have full blown migraines now. 2mg AM 1mg PM. They told me that I will get use to it. And til this day I'm still waiting....lol.
Prograf is such a awful drug but you still gotta take it.
Kidney Transplant 3/08, 21 yrs old
IgA Nephropathy |
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Alim
Member
Username: Alim
Post Number: 9
Registered: 04-2012
| | Posted on Monday, April 16, 2012 - 07:39 pm: |
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Thank you for the feedback! It helps to know I am not the only one feeling rocky! Starting sirilimous ...fingers crossed! |
cruizin
Member
Username: Cruizin
Post Number: 272
Registered: 09-2010
| | Posted on Tuesday, April 17, 2012 - 10:02 am: |
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Hi Alim,
If you sign up to a site called PatientsLikeMe, you can ask one patient on belatacept. Her profile is at:
http://www.patientslikeme.com/patients/view/88640?patient_page=1
Received kidney Mar 16, 2011, from my brother! 3/6 match
St. Joe's, Hamilton, ON
Peritoneal dialysis Nov '08 - Mar '11
Dx 1995 - believed to be chronic glomerulonephritis
Started CAPD Oct 2008 |
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Alim
Member
Username: Alim
Post Number: 11
Registered: 04-2012
| | Posted on Wednesday, April 18, 2012 - 06:52 pm: |
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Thank you so much...I will....just started sirilimous while still on the Prograf and cellcept and pred....hope to wean off Prograf! |
Waz
Member
Username: Waz
Post Number: 4
Registered: 04-2012
| | Posted on Friday, April 27, 2012 - 11:33 am: |
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Hi Alim ask your doctor if you can have beta blockers.. Used for blood pressure, they tend to also help with anxiety hence shaking hands and head aches...
Salam |
Alim
Member
Username: Alim
Post Number: 17
Registered: 04-2012
| | Posted on Friday, April 27, 2012 - 01:35 pm: |
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Cruising, I did sign up and sent a message off but no response as of yet....
Waz, I will ask...tremors and headache are directly related to Prograf  ....... The tremors and headaches were much worse on the higher dosages but I will ask! Thank you so much both of you!! |
