Tacrolimus suppositories

I haven't heard of anyone using these suppositories, but it makes sense, and I can't wait to hear about your progress. I would imagine it depends on how far the inflammation goes... is it limited to the rectum? If so, this could potentially help you to make big steps forward. If it is beyond, the success may be limited to the end area and it wouldn't make too much of a difference in overall symptoms. That's how it went for me. I was treating the rectum, and at my last sig, it looked pretty good from the rectals, but beyond the area suppps/enemas treated, things were a mess - so my symptoms were still pretty severe. Good luck!

What other meds are you on as well? I've not heard of them...hope they help.
q

Oh My! I use it topically for my PG. I will ask my GI about suppositories. I had no idea it came in that form!

Hope it helps:)

My doc is Professor Thomas Borody, one of the pioneers of fecal transplants so he is definitely creative :)!
I had the suppositories made up at a place called Sydney Compounding Chemist, was a cinch.
To keep you updated, I administered my first one last night and noticed a very very slight hot/almost burning sensation although it faded within half an hour which makes me think it may have just been my UC reacting to something touching it. I then went to bed and woke up this morning and, for the first time in weeks, I didn't need to rush out of bed to go to the bathroom with diarrhea. I got up, had my tablets and my probiotic and went back to bed for a bit. At around 9am I started feeling like I needed to go. Was expecting it to be totally liquid but instead was formed, the water was still colored but you could definitely see some form at the bottom of the bowl through the water. It also made me felt good/empty afterwards. I was really good until around 1pm when I got quite bad stomach pains which hadn't been a feature of my flare. It also didn't feel like bowel pain but was higher up and right in my stomach. I thought "oh no here's the catch" but they disappeared around half an hour later, I also had some mild nausea but that's all gone away now so I'm hoping it stays that way. It's 4pm in the afternoon and I haven't had another bowel movement since and I don't feel like I need one. It's hard for me to tell what has actually led to the improvement, whether it's that, all the probiotics I'm taking, time, or a combination of all those things. I'll keep going with it and see how I go. I'm hoping that I respond to this medication as otherwise I'm back in the position of having no medication to save me when I flare!

Did you try FT? I feel like if I went to Borody I would definitely give it a shot :)

What's the dosage of Tacrolimus in those suppositories ?

Tacrolimus suppositories are certainly interesting and novel. Tacrolimus is a strong immunomodulator like cyclosporine. Giving it as a suppository appears to cut down considerably on side effects. Although some Tacrolimus is measured in the blood but not nearly as much as oral administration. I'm seeing some small scale, open label studies on it (no double blinds), which look promising with 75 percent remission rates. Certainly not a standard uc treatment, nor has it been tested for longterm safety, nor has it been studied large scale as a double-blind. Keep us posted on whether it works, definitely interesting.

/www.ecco-ibd.eu/index.php/publications/congress-abstract-s/abstracts-2015/item/p587-tacrolimus-suppositories-in-therapy-resistant-ulcerative-proctitis-a-single-center-experience.html

www.ncbi.nlm.nih.gov/pmc/articles/PMC3091152/?report=classic

I am sorry you had to go to the hospital but glad you are out now. Better to be safe than sorry especially with any past history. Lucky to have a friend like Thomas Borody. I know the solutions some of my friends would offer would be inappropriate at best but good for a laugh :) Prof. Borody seems like a major pioneer and sounds like he is doing all to help you.

It is very encouraging that you are having success with the tacrolimus supps. Hopefully this will work out great and you will have smooth sailing!!!
B

I would imagine these could become more common considering topical cyclosporine is used in a lot of ointments and drops. Restasis eye drops are cyclosporine... I don't think it's all that "out of the box", probably just something that clinicians don't offer because the suppositories need to be compounded, and often compounded medication isn't well covered by insurance.

I am interested to see how you do! I also wonder about whether it is a long term option. I know in my case, it wouldn't have made a huge difference considering my rectum wasn't in terrible shape - due to enemas. it was everything beyond there that I couldn't control.

On here it says not to use topical tacrolimus ointment for more than 6 weeks continuously: /www.nlm.nih.gov/medlineplus/druginfo/meds/a602020.html

WorriedUCer said...
Yes, I used to also work for him as a researcher for a number of years so I consider myself very fortunate to cal him a friend. I have had the fecal transplants, in fact that was all I ever needed to maintain myself in remission for years, within a day they could turn around a flare. However a few years ago I suffered a stroke and so became more cautious of what I take.
The tacrolimus are 3.5mg. I had to go to the hospital last night as they found my INR (I take warfarin) through the roof so obviously it is interacting with the tacrolimus which is a pain in the butt however I specified that I wanted to stay on the tacrolimus because it's working for my UC so they have temporarily stopped the warfarin. It's 9am now and I still don't feel the urge to go to the bathroom now which I'm taking to be a good sign, I felt well all day yesterday and am predicting a formed stool this morning. Will keep you updated.

thanks for the info, i wish you a continued improvement and a lifelong remission

intriguing treatment

I'm sorry this is such an old thread but I'm really stuck. My drs have 'prescribed ' this over a month ago and they've now said they can't find anywhere to get it in england and they can't make it either! Anyone tried any alternatives? I've got a second opinion at another hosptial and I'm hoping they might be better because I've been in a flare for 2.5 years and hospitalised twice with no relief really! I take 150mg of azathioprine and have entyvio infusions every 8 weeks and still not out of it!

Poor us😣 it's so frustrating that they can't find it in the uk. It was obviously dreamt up by some consultant during an mdt before it had been explored!
They're trying to avoid surgery by the looks of it but I wis they would do things a bit faster! Not sure about healthcare in Canada (sorry) but the nhs in the uk is awfully complicated and SLOW!
I hope you find something that works for you and you're specialists are good, I'm at the point now where I'm just trying to accept that Im just going to be ill and have to accept that. Xx