Anyone on Tacrolimus?
- Thread starter izzi'smom
- Start date
Help Support Crohn's Disease Forum:
I am not on it. But I want to tell you something, just because I feel everyone should know the good AND the bad before taking a medication...regardless of how scary. My 11 year old nephew has Lymphoma because of Prograf (Tacrolimus ). He is in a completely different situation, but the warnings are the same. Because of his lowered immune system from the Tacrolimus, he contracted Epstein Barr Virus, which in turn lead to Lymphoma. He was taking Prograf because he had a liver transplant two years ago. Please be extra aware of any tiredness or weakness, and MOST DEFINITELY watch for swollen lymph nodes. He has incredible doctors but even the best doctors can't keep this from happening.
We all know that there are serious warnings for some of the meds we have to take. And of course, we weigh the pro's and con's of meds vs. no meds. It's kind of weird because my nephew and I get infusions of drugs in the same class (Remicade and Riflixumab for chemo) for such different illnesses.
Again, I'm not trying to scare you, just wanted to let you know the other side. I hope you find something that works, it must be terrible to watch your baby go through such a difficult illness. Best of luck to you guys!
We all know that there are serious warnings for some of the meds we have to take. And of course, we weigh the pro's and con's of meds vs. no meds. It's kind of weird because my nephew and I get infusions of drugs in the same class (Remicade and Riflixumab for chemo) for such different illnesses.
Again, I'm not trying to scare you, just wanted to let you know the other side. I hope you find something that works, it must be terrible to watch your baby go through such a difficult illness. Best of luck to you guys!
DustyKat
Super Moderator
- Joined
- May 8, 2010
- Messages
- 23,973
Thanks for that. 
I see the dosage is 0.1 - 0.2mg per kilo so your nephew was at the higher dosage. I wonder if they use the lower rate for Crohn's? If so I imagine it also further reduces your chances of developing the more serious side effects? Not sure though.
Dusty. xxx
I see the dosage is 0.1 - 0.2mg per kilo so your nephew was at the higher dosage. I wonder if they use the lower rate for Crohn's? If so I imagine it also further reduces your chances of developing the more serious side effects? Not sure though.
Dusty. xxx
It doesn't seem to specify in the black box warning from the FDA, other than it is higher in "young patients". It's certainly something to tal to the GI doc about. Although it doesn't seem to be much different than the other immunosuppresive drugs that are prescribed for Crohn's/UC. Again, it's a pro v. con kinda thing.
Different situation, but I use this in ointment form for skin issues associated with the Crohn's. It works very well and can be used long term where the alternative, steroid creams would cause skin damage. As it has been effective for me, I'd definitely consider asking my GI if we could use this as an alternative treatment to the anti TNF drugs that I've been using to date.
All of the drugs used to treat Crohn's come with significant potential risks attached. Do your own research, talk to your GI and then you will be in a position to make an informed decision.
Mark
All of the drugs used to treat Crohn's come with significant potential risks attached. Do your own research, talk to your GI and then you will be in a position to make an informed decision.
Mark
