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Hoda
Regular Member


Date Joined Jun 2017
Total Posts : 32
   Posted 7/11/2018 4:16 PM (GMT -6)   
Has anyone tried tacrolimus? Any feedback?

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16719
   Posted 7/11/2018 7:31 PM (GMT -6)   
Everyone who's tried it says it's been a miracle for quickly achieving remission. You do need monitoring though, and it's not usually seen as a long-term option, though I've seen some conflicting information overall. I didn't try it myself. It's mostly used as rescue and a bridge to another treatment. Is that what you're thinking? People also use it topically as suppositories - only somewhat recently i've seen this mentioned. Sounds like long-term oral use usually results in intolerable side effects over time, but this information is from a quick search on google, I am certainly not the authority.

My dog is on it daily for dermatitis and he does fantastic - it's been years. Interesting how a dog can use it daily without consequence.
Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

Post Edited (notsosicklygirl) : 7/11/2018 6:35:30 PM (GMT-6)


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5159
   Posted 7/11/2018 7:53 PM (GMT -6)   
I haven’t but I’ve used a similar drug called Cyclosporine. It is very fast acting, my GI calls it the atomic bomb of UC weapons.

I liked it but does require an IV with hospitalization
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 13200
   Posted 7/12/2018 7:29 AM (GMT -6)   
As other's have said IV tacrolimus is a short-term rescue medication much like IV-steroids, IV Cyclosporine, or double-dose IV Remicade are. Tacrolimus is a strong, fast-acting immunomodulator, much like Cyclosporine that works well for many while you're on it. Much like prednisone, Tacrolimus/Cyclosporine is only for temporary usage and therefore you need an escape plan for what you will use afterwards to sustain your quality of life (they buy you time while other maintenance treatment meds are given time to work). Tacrolimus/Cyclosporine is often used when someone is steroid-refractory (meaning IV steroids do not work). You'd take Tacrolimus/Cyclosporine with the hopes of that working or else you're slated for an emergency surgery for a colectomy. It's one of those nuclear weapons we have in our arsenal but only used sparingly when everything is FUBAR (F'ed/Fouled Up Beyond All Recognition/Any Repair/All Reason) and there is no other choice but to try it to tame a flare.

Some teaching-hospitals might try to use Tacrolimus/Cyclosporine in more novel ways, and perhaps not as a last-ditch effort as would be done in more traditional GI-practices. For example, I've heard of Tacrolimus Suppositories being used experimentally in some UC patients, sometimes with results.

Embellish us a little bit about your situation, whats' the current state of your UC?, what meds are you currently on?, and How bad are your UC symptoms?
Moderator Ulcerative Colitis
John
, 40, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

With UC, we're much like a footballer on our way to the bathroom: running, jumping over and agilely dodging around obstacles, and knocking out-of-the-way all that are in our path to the end-zone.

Post Edited (iPoop) : 7/12/2018 6:36:02 AM (GMT-6)


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5159
   Posted 7/12/2018 1:53 PM (GMT -6)   
My GI will use Cyclosporine for upto 12 months. I've taken it for 6-7 months while the 6-mp was kicking in.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Fletch10
Regular Member


Date Joined Feb 2017
Total Posts : 239
   Posted 8/7/2018 4:12 PM (GMT -6)   
Just saw this and wanted to respond. I’ve been on tacrolimus suppositories on and off since late April. They have been FANTASTIC when Remicade was not getting the job done. I only had a partial response to prednisone, but it didn’t get me close to remission, so this has been my rescue drug.

The suppositories need to be made at a compounding pharmacy since they are used off-label for UC; your IBD center/doctor can arrange this. They need to be refrigerated at all times.

I have had minor side effects (skin feels kind of hot most of the time - this is the only side effect that doesn’t go away right away; there was a little stomach upset for the first few days; and a bit of burning from the supps themselves for the first few days). Tacrolimus suppository side effects are NOTHING compared to what prednisone did to me ;)

Your tacrolimus levels do need to be monitored as NSSG mentioned. Mine ran high on two doses per day so I’m now at 1 dose per day while waiting to start Entyvio. I don’t know that the suppositories will do much for inflammation beyond the rectum, but for those with proctitis (which is where my disease is now), it’s a great option.
--
F, 41. Diagnosed Feb. 2017 - left-sided UC.
Steroid-refractory.
Failed mesalamines (intolerant) and Remicade (partial response)
Short remission fall/winter 2017
Flaring since Feb 2018
Currently on tacrolimus supps 1x daily, waiting to start Entyvio.
Zoloft; mostly dairy free, avoiding carrageenan like the plague ;)

Verucasalt2.0
Regular Member


Date Joined May 2016
Total Posts : 232
   Posted 8/7/2018 5:03 PM (GMT -6)   
I was on the suppositories for around 3 months, in addition to weekly Humira. I had a flex sig and my doc said I still had significant inflammation and frankly, besides burning like a mofo, they didn't do a whole lot for me anyway. Both Humira and the supps were replaced with Entyvio and Rowasa.

I did read an article about how Entyvio and Tacrolimus combined were giving good results in UC patients. It didn't say how the Tacrolimus was being administered though. I assume not up the butt.

IntestinalWasps
Regular Member


Date Joined Mar 2018
Total Posts : 211
   Posted 8/9/2018 10:57 AM (GMT -6)   
Tacrolimus saved me.

I was losing blood and in an AWFUL flare *for a LONG TIME* that Prednisone WOULD NOT BUDGE. Once I was transferred to a hospital that knew what they were doing, they chose oral Tacrolimus and ditched the Prednisone. It worked wonders for me in a very short time period, and I experienced ZERO side effects!

The only downside of it is that you need your blood checked pretty regularly to ensure the tacrolimus levels are therapeutic and not toxic.

Mind you* I did not reach remission with Tacrolimus, and I don't believe that it's used to attempt to get people into remission, just as Prednisone is not. You're typically going to need further treatment, depending on the severity of your situation. Tacrolimus was used in my situation in order to bridge me onto my biologics and get me leaning on those, and get me off of Tacrolimus.
27 years old/Female - Diagnosed December 2017
Ulcerative Pancolitis/CMV/Anemia/Liver damage
Remicade - FAILED
Prednisone - FAILED RESPONSE
Tacrolimus (bridging biologic)
Entyvio (currently on dose #6) - (Only medication currently)
Uceris (secondary bridging biologic due to symptom return)
x2 Iron Infusions
Blood Transfusion
Current Case Study Member/Patient @ UT Southwest in Dallas, TX
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