Anyone heard of Pro Graf?

[LittlebitsMommy]

We took Ko back today for his checkup with GI. Let me just add we love him more with each visit:thumright:

Kotas heart rate was good 93. Way down from being close to 200. All his labs look good. His weight was up even more. He has gained 40 pounds since Feb 2012. Dr said he thought alot of it was from the constant steriod use.

We decided to lower Entocort to 3mg for the next 8 weeks and see how he does. We are hoping this wont put him in a big flair. Dr wants to see how he does with cutting it back. The last two meds we tried 6mp and methotrexate both messed him up really bad. So dr didnt want to add a new medicine at the sametime as cutting the Entocort. This way we will know which it is if he has problems.

The medicine he said he was thinking of trying hi on at next visit is Pro Graf. HE said it is usually used on transplant patients. I was wondering if anyone has heard of this medicine or used it for Crohns.

Thanks and I hope all your littleones are feeling well

 

[kimmidwife]

Prograf is also called tacrolimus. I am pretty sure that is the drug Angie's daughter Izzie has been on for a while and is doing very well on it.

 

[Farmwife]

Yes!
Izzy'smom would be the one to talk to. She loves it for her daughter or did, I should say.
I believe that drug let her hold off on Izzy's colon being removed. Sorry if I'm wrong Angie.

I'm glad your little (Big) man is doing better. How is your other son doing?

 

[izzi'smom]

Sorry I've been mum lately...overwhelmed.

We are coming up on 9 months on Tacro...labs- normal, pain- almost gone. 1-2 bms a day compared to 10-20 with blood. She has a bit of urgency and occasional incontinence but I believe it is functional after having colitis for over a year.

It requires regular labs to determine the proper dose...we get drawn every month to ensure her dose is correct. She takes 2.2 ml of Tacro twice a day and is also on 160mg of Bactrim daily to prevent a certain type of pneumonia (I think it is PCP). Tacro is an immune suppressant.

We have had no ill effects, although it is known to cause kidney damage. Our Boston GI was reluctant for her to stay on it past six months, although transplant recipient patients are on it indefinitely. They wanted to do a colectomy, which I cancelled in August.

Please message me with ANY questions...there are so many threads I can't keep up anymore.

Sending hugs and hoping that if you decide to go with prograf that it is the answer for you!

 

[Sascot]

Glad to hear Kota is feeling alot better, I hope the decrease in Entocort doesn't cause issues. No idea on that med, good luck if you do have to start it.

 

[Patricia56]

Another rarely used med is Thalidomide which is a TNF-alpha inhibitor.