| Author |
Message |
Alim
Member
Username: Alim
Post Number: 13
Registered: 04-2012
| | Posted on Thursday, April 26, 2012 - 03:59 pm: | 
|
Anybody on this new immunosuppressant? I am having trouble with the ones I am on( pred/ Myfortic/ Prograf) have tried cyclosporin as well as sirilimous with symptoms being worse on the last two.......any ideas? |
cruizin
Member
Username: Cruizin
Post Number: 279
Registered: 09-2010
| | Posted on Friday, April 27, 2012 - 09:57 am: |
|
Before you go there ... what are your pred, MPA, and tacro serum levels?
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 |
|
Alim
Member
Username: Alim
Post Number: 14
Registered: 04-2012
| | Posted on Friday, April 27, 2012 - 10:14 am: |
|
5mg prednisone
360 Myfortic twice a day
4mg Prograf twice a day.....
Horrible tremors but the headaches are debilitating! |
cruizin
Member
Username: Cruizin
Post Number: 280
Registered: 09-2010
| | Posted on Friday, April 27, 2012 - 10:28 am: |
|
Hi Alim, do you know what your tacro blood serum level is? This is the most important number, given your symptoms ...
IIRC you are not far out from your transplant, so the hospital should bring your tacro levels down.
Shortly after transplant, I had the exact same side effects (as well as burning/tingling feet, hands, and lips). If my tarco serum goes above 10 ng/L, I can pretty much guarantee these side effects would re-occur. I had a headache every day above 10 ng/L, when I otherwise almost never get headaches. Since my level has been around 5-7 for probably 7-9 months, none of these (or any other) symptoms occur.
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 |
|
Alim
Member
Username: Alim
Post Number: 15
Registered: 04-2012
| | Posted on Friday, April 27, 2012 - 10:36 am: |
|
Cruizin... My tac levels are 6-7 right now...they are trying to run them low given my symptoms and really cannot go much lower  not sure belatacept is an option but with the headaches, not sure how I will work.... My doc is worried if we go lower I will reject which is the last thing I want! I will live with the headaches and tremors!!
Ali |
cruizin
Member
Username: Cruizin
Post Number: 283
Registered: 09-2010
| | Posted on Friday, April 27, 2012 - 10:55 am: |
|
Hi Alim, yes it's possible that unfortunately you may be pretty sensitive to tacro 
The one exclusion criteria for going on belatacept (now called nulojix) is if you are EBV-.
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 |
|
Alim
Member
Username: Alim
Post Number: 16
Registered: 04-2012
| | Posted on Friday, April 27, 2012 - 01:08 pm: |
|
Yes, I know but I am EBV positive...do you know anyone on belatacept? |
cruizin
Member
Username: Cruizin
Post Number: 284
Registered: 09-2010
| | Posted on Friday, April 27, 2012 - 02:26 pm: |
|
Unfortunately, not personally. I only spoke to the one patient on PatientsLikeMe I mentioned in another thread. At the time, she was very happy with the drug. That was a year ago.
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 |
|
Alim
Member
Username: Alim
Post Number: 18
Registered: 04-2012
| | Posted on Friday, April 27, 2012 - 02:34 pm: |
|
C...I sent a note to the link and patient you provided..but no response....... Thank you for all of your help! |
Carl
Member
Username: Carlbullen
Post Number: 50
Registered: 01-2012
| | Posted on Sunday, April 29, 2012 - 01:27 pm: |
|
Belatacept sounds very interesting... I remember reading about it about 5 years ago; and it's supposed to block the immune system (T cell activation) in a much more selective way than Cyclo or Tacro.
Very interesting:
http://www.nejm.org/doi/full/10.1056/NEJMoa050085
Must ask docs next time I go. Wonder if it's been approved in the UK.
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 |
|
