CellCept

[T_Anna]

OK, we will be trying CellCept.

 

After 2 HD IVIGs and PEX and then another 4 HD IVIGS + steroids and IV steroids we have only seen minimal improvement.

 

We are taking the plunge and trying CellCept.

 

Wish us luck.

 

Thanks as always,

T.Anna

 

[michelew]

Best of luck, Tamar. You're always in my thoughts. I hope this will be the answer to your prayers.

[Agnes26]

Good luck. I hope it helps.

[T_Anna]

Thanks!!

 

I will keep you posted!

[MMC]

Yes, please keep us posted, we might be headed this way also. Depending on what the docs say after one more month of IV steroids.

[PowPow]

I do wish you luck! it is definitely helping my daughter! I sincerely hope some of you find the same results we have.

It requires some monitoring - so it is important to have a physician who is very familiar with it.

[PowPow]

also, they said it could take 6 months to work

&

(the biggest help of all to me) the timing with food is not critical in this use. I had read that the meds need to be given one hour before/after food.

this was impossible (now that she goes to school EVERYDAY!!). our doc said for this indication, timing with food does not matter.

[PowPow]

yet another thing- sorry to keep posting-- my pharmacist highly suggested we get the brand name for this specific drug. We have done that since our first fill. Not sure if it makes a long run difference- but I am not messing with success at all at this point!

[T_Anna]

Thanks PowPow! Turns out CellCept is a specialty med thru UHC so I had to plead for a dispensation for our first round and got it from the local pharmacy. Also thanks for the tip about avoiding the generic, made sure that was followed too. Now just need him to get out of the bathroom so we can start tomorrow morning.

 

Wish us luck!!!

 

T.Anna