My Miracle Drug: Prograf (Tacrolimus)

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serendipity24
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/9/2008 3:24 AM (GMT -6)   
I am so so happy I found this site! I can't believe it took me so long. I've already appreciated a number of comments and can relate to quite a few stories.

One thing I noticed in reading everyone's drug regimen is that nobody is taking Prograf (Tacrolimus). It has truly been my miracle drug! After becoming steroid dependent during my second course of prednisone, I must have tried 5 times to taper, never getting under 10mg/day. I finally tapered off SUPER slowly--I can't tell you how it tested my patience given the side effects we all know and love. Had a baseline colonoscopy with my newer GI doc (still wasn't 100%--mostly had disease of the transverse colon--weird I know), and 3 weeks later started flaring again.

My doc uses Prograf as a last option before Remicade. It's an oral capsule rather than an injectable. It's an immune suppressant, so I get blood levels taken regularly, and I'm using it "off-label." It's "label" usage is as a drug for whole organ transplant patients.

I've literally been able to add in almost everything I cut out of my diet for the last 3 years! Including some dairy!

Does anyone else have experience with this drug?? My former GI doc had never heard of it before.

Looking forward to hearing from you,
Rachel
Rachel

23 yrs old
Diagnosed with UC: March 2004 with probable IBS component

Currently taking:
Asacol 4pills 3x/day
Prograf 5mg/day
(Prograf is my miracle drug! It doesn't seem to be well known, but it's fantastic!)

Previously Tried:
Prednisone (works, but such awful side effects!), 6-MP (gave me acute pancreatitis), Entocort, Cipro (antibiotic), Bentyl, Canasa suppositories, a couple different enemas


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 1/9/2008 6:39 AM (GMT -6)   
Hi Rachel and Welcome! I personally don't have any experience w/ Prograf. I am glad it is working for you. I do take Imuran which sounds similar.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

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Co-Moderator UC Forum


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5090
   Posted 1/9/2008 10:23 AM (GMT -6)   
I think there are a couple of others who used Prograf on this site.... I use Cyclosporine which is the sister/cousin drug of Prograf. It works very well for me too. Isn't it scary that there are GIs out there that don't know all of the meds that are available to us. It's good that you found a more informed GI.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted 1/9/2008 11:07 AM (GMT -6)   
Hi and welcome!  I am glad Prograf is working for you. I broke out in hives from it, and my GI said to stop it. I was also on Remicade at the time. The pharmacist didn't want to give me the prescription at first, he was really confused about why my GI would prescribe it. I guess it is pretty new. I am glad it is working for you, that is great! Especially that you don't have to inject it.


Diagnosed with Left-sided Ulcerative Colitis 1995 at 15
Tried: Prednisone, Rowasa & Hydrocortisone Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Proctocort, Anamantle, etc...
Diagnosed with Ulcerative Proctitis with almost rectovaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed with Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Jan 29) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil as needed, Darvocet, Tylenol pm


jack99
New Member


Date Joined Sep 2006
Total Posts : 19
   Posted 1/9/2008 2:33 PM (GMT -6)   

Hi,

Tacrolimus is on the list of things for me to try if things continue as they are.  It is similar to cyclosporin but in oral form.  There have been a number of studies on it but quite recent.  It is regularly used to prevent transplant rejection. The main problems,  and the reason it is not that popular yet,  in treating young people are that it can cause kidney failure - it can cause an (initially) reversible increase in the serum creatinine in approximately 30% of people and also an increase in blood pressure.  My gastroenterologist tells me that as ulcerative colitis is "curable" through surgery many are reluctant to prescribe it as the worst thing would be to end up needing a colectomy as well as a renal transplant.  However,  it can be very effective in resistant cases - one study followed people up for up to around 6 years and many did well atlhough some obviously did come to colectomy.

It can work very quickly I believe.  I'd be interested to know what you have tried in the past and how long it took to work and also how long you have been on it.  I don't intend to scare you with the side-effects - my gastroenterologist said that if I went on it and he detected even a slight increase in creatinine he would stop it for good as it should be reversible at that point.

Hope you continue to do well on it


jack99
New Member


Date Joined Sep 2006
Total Posts : 19
   Posted 1/9/2008 2:35 PM (GMT -6)   
sorry - if I'd read your post correctly I'd have seen what you'd tried before

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5090
   Posted 1/9/2008 3:18 PM (GMT -6)   
Jack99,

Cyclosporine is available in an Oral form but results are better if you start on an IV. Right now I am on Oral Cyclosporine, I will probably be on it for the next couple of months. It is only a treatment med, not a maintanence drug.... you should be on an other drug such as 6-mp or immuran to keep you in remission.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


serendipity24
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 1/9/2008 3:44 PM (GMT -6)   
Hey Jack99,
I've been on the Prograf since April 2007. I started out at 4mg/day and saw changes within the first couple weeks, but thought I could improve more. We upped the dose to 5mg/day, then to 6mg/day over a couple of months. My blood levels after a month at 6mg/day were way too high, and my doc called me immediately. I stopped taking it altogether for a few days, then stayed at 4mg/day to bring down the blood levels. I've been back up at 5mg/day with good steady levels since October.

I think since I started using the drug at the very beginning of my most recent flare, that it didn't take long to kick in. I was also on Canasa suppositories as needed in the beginning but wasn't using them at all after a couple of weeks. My blood pressure has been normal the whole time. Surgery has never been brought up in my case--which is mild to moderate. As long as this drug keeps working I'll stick with it! I've also experienced almost NO side effects, which to me is incredible!

My doc did say that he prefers to put his patients on 6-MP, but I tried that in the past and got acute pancreatitis from it.

Hope that answered your questions. Feel free to ask more.

Rachel
Rachel

23 yrs old
Diagnosed with UC: March 2004 with probable IBS component

Currently taking:
Asacol 4pills 3x/day
Prograf 5mg/day
(Prograf is my miracle drug! It doesn't seem to be well known, but it's fantastic!)

Previously Tried:
Prednisone (works, but such awful side effects!), 6-MP (gave me acute pancreatitis), Entocort, Cipro (antibiotic), Bentyl, Canasa suppositories, a couple different enemas


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 471
   Posted 1/12/2008 2:37 PM (GMT -6)   
I'm glad Prograf worked for you.  I did nothing for me.  I got terrible hand spasms, which my GI warned me were a sign of something serious going on.  I stayed on it for a few months but have since gone back to azathioprine.  I agree, very few people seem to be on it, or even know it exists.
Back on Pred - 5mg - Steroid Dependent :-(
Azathioprine 150mg
Actonel 35mg
Predfoam Enema
EPA Fish Oils
Various Homeopathic meds
Asacol x 9
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 


serendipity24
Regular Member


Date Joined Jan 2008
Total Posts : 56
   Posted 3/2/2008 12:47 AM (GMT -6)   
bump
Rachel

23 yrs old
Diagnosed with UC: March 2004 with probable IBS component

Currently taking:
Asacol 4pills 3x/day
Prograf 5mg/day
(Prograf is my miracle drug! It doesn't seem to be well known, but it's fantastic!)

Previously Tried:
Prednisone (works, but such awful side effects!), 6-MP (gave me acute pancreatitis), Entocort, Cipro (antibiotic), Bentyl, Canasa suppositories, a couple different enemas

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