Hi, I have just been to clinic, as my hair is getting really thin and I have neuropathy it was decided to change my dose of the tablets above. I have to double my Myfortic to 720x2 (which worries me as I was on that dose straight after my transplant and had a terrible problem with my bowels) I also have to lower Prograf from 7x2 to 6x2 per day - Pred is staying at 5ml.
Is anyone else on these doses, and if so, are you having any bowel problems? I am only 8 months out and worried about changing anything so early. I had rejection at 3 days.
Lizzie
Myfortic, Prograf and Pred.
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Cheryl in CT
- Posts: 412
- Joined: Wed Apr 21, 2004 10:17 pm
- Location: Connecticut, USA
Hi, Lizzie -
I know it's hard NOT to worry a lot when the docs start messing with your meds, but especially in the first year post-transplant, there's often quite a bit of fine tuning required... As long as they're closely monitoring your bloods as changes are being made, things should be okay and eventually even out.
I am 7 years post-transplant now, and except for a change in my Prograf dosage (up from 3mg to 3 1/2 mg twice per day two years ago, and recently, back down to 3 mg twice per day), my meds haven't been changed in over 5 years. I also take 1000 mg Cellcept (same chemical composition as Myfortic, I believe - just minus the coating on the tablets) each morning & night, and 5mg pred once a day.
Stomach and/or bowel issues are a well-known side effect of the Cellcept/Myfortic meds. (I've had 'em, sometimes still have 'em, don't like 'em, but put up with 'em anyway, just to save my renal function!) For me, it's a trade-off, and it's worth it since my transplanted kidney is functioning so well.
You might want to check with your doctor or with your nurse (they often have decent - and sometimes, better - advice about these sorts of things) and see if there are things you can do to help with the bowel issues. Diet, stool softeners (if that's the problem), etc come to mind for the more common issues, but if the problems are more severe - like internal bleeding (my issue!) you'll need more definite medical attention.
As for the hair loss, well, that's probably the Prograf. (Not a medical opinion here - just my own personal experience...)
My own hair loss started a few months post-transplant, and I honestly thought I would go bald! It didn't happen, tho - and it wasn't very long before my hair grew back in again. Lots of transplant recipients have exactly the same experience (tho others sometimes have excess hair growth instead. Being female, I definitely preferred having the former to the latter!)
Some female posters here on the board have mentioned having their hair cut shorter until it starts to grow in again. If that's an option for you, you might want to try it - sort of give yourself a lift with a new "'do" - and no exposed balding patches!
Lizzie, I know that every step along the road you're on brings yet another (perhaps unwanted!) experience and/or concern, but it WILL continue to get better, and that first year will be over before you know it.
Wishing you a long and healthy partnership with your "new" kidney!
all the best,
Cheryl
Connecticut/USA
I know it's hard NOT to worry a lot when the docs start messing with your meds, but especially in the first year post-transplant, there's often quite a bit of fine tuning required... As long as they're closely monitoring your bloods as changes are being made, things should be okay and eventually even out.
I am 7 years post-transplant now, and except for a change in my Prograf dosage (up from 3mg to 3 1/2 mg twice per day two years ago, and recently, back down to 3 mg twice per day), my meds haven't been changed in over 5 years. I also take 1000 mg Cellcept (same chemical composition as Myfortic, I believe - just minus the coating on the tablets) each morning & night, and 5mg pred once a day.
Stomach and/or bowel issues are a well-known side effect of the Cellcept/Myfortic meds. (I've had 'em, sometimes still have 'em, don't like 'em, but put up with 'em anyway, just to save my renal function!) For me, it's a trade-off, and it's worth it since my transplanted kidney is functioning so well.
You might want to check with your doctor or with your nurse (they often have decent - and sometimes, better - advice about these sorts of things) and see if there are things you can do to help with the bowel issues. Diet, stool softeners (if that's the problem), etc come to mind for the more common issues, but if the problems are more severe - like internal bleeding (my issue!) you'll need more definite medical attention.
As for the hair loss, well, that's probably the Prograf. (Not a medical opinion here - just my own personal experience...)
My own hair loss started a few months post-transplant, and I honestly thought I would go bald! It didn't happen, tho - and it wasn't very long before my hair grew back in again. Lots of transplant recipients have exactly the same experience (tho others sometimes have excess hair growth instead. Being female, I definitely preferred having the former to the latter!)
Some female posters here on the board have mentioned having their hair cut shorter until it starts to grow in again. If that's an option for you, you might want to try it - sort of give yourself a lift with a new "'do" - and no exposed balding patches!
Lizzie, I know that every step along the road you're on brings yet another (perhaps unwanted!) experience and/or concern, but it WILL continue to get better, and that first year will be over before you know it.
Wishing you a long and healthy partnership with your "new" kidney!
all the best,
Cheryl
Connecticut/USA
I too am suffering from hair loss 
I used to have a huge head of marvellously curly hair before my transplant and I've had to cut it all short as my scalp is showing through loads now 
In my personal experience, Ciclosporin led to excess hair growth, which is why I got switched to Prograf, and though I'm sad about my lost hair I'd rather that than the hairy shoulders and back I was starting to get. I'm told the hair will start to grow back after a year or so. I *really* hope so!
Still - if some hair loss is the only cross I have to bear these days, I'll take it.
I used to have a huge head of marvellously curly hair before my transplant and I've had to cut it all short as my scalp is showing through loads now In my personal experience, Ciclosporin led to excess hair growth, which is why I got switched to Prograf, and though I'm sad about my lost hair I'd rather that than the hairy shoulders and back I was starting to get. I'm told the hair will start to grow back after a year or so. I *really* hope so!
Still - if some hair loss is the only cross I have to bear these days, I'll take it.
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bigbuzzard
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I think I'm right in remembering that Myfortic is an alternative to MMF based on the same active ingredient, that is supposed to be less likely to produce gastro-intestinal side effects.
I was n MMF for over a year, and I did notice 'bowel effects' - though they weren't too serious, and completely tolerable. Myfortic was mentioned as a possibility if these got worse.
As it happens I've changed to a different regime that uses neither. My guts do seem happier
good luck
I was n MMF for over a year, and I did notice 'bowel effects' - though they weren't too serious, and completely tolerable. Myfortic was mentioned as a possibility if these got worse.
As it happens I've changed to a different regime that uses neither. My guts do seem happier
good luck