Offered ciclosporin, tacrolimus or methotrexate... so confused

Saw my GI today about my flare, and she said we could either increase the azathioprine dose, or if that doesn't work, try one of these drugs. This was entirely unexpected because a) I've never even heard of ciclosporin or tacrolimus, b) I genuinely thought methotrexate wasn't really used in UC anymore, and c) the drug I was expecting her to suggest, infliximab/Remicade, is apparently really hard to obtain here in the UK, so I probably won't be able to start that.

I'll obviously do a site search and try to learn more about these medicines now, but I was really shocked to be offered drugs I'd never even heard of. I thought I was on the ball with this stuff.

I'm feeling really overwhelmed and don't know what to do. Is there anything on this list that I should definitely be avoiding? As always, any feedback greatly appreciated.

Hello I'd like to chime in. I'm also in the UK and have been on all three drugs plus Remicade at one time or another.

First I'm really sorry but Tacrolimus has absolutely nothing to do with PML. I think the above poster is confusing it with Natalixumab and the very new Vedolizumab. But I've been on very high doses of Tacro for a year and whilst it has ickiness, PML is nothing whatsoever to do with it.

Cyclosporin and Tacrolimus are oral. Methotexate is normally administered via at home injection.

I have take 11 mg Tacro since last August and it's the only thing that's brought me close to remission.

Does the AZA do anything? If it helps a little and you can tolerate a higher dose that's what you should do since you are already on it. It wouldn't be introducing anything new. What kind of probiotics did you take? Probiotics is a really generic word. There is a huge difference between a probiotic that has 1 billion CFU's in it and VSL which has hundreds of billions of CFU's. Also, like meds, one probiotic might help someone and not another so maybe you needed a different probiotic. It's not fair to give one a shot and skip all the others because the one didn't work and then take several different kinds of meds until you hit one that works. Fish oil can make some worse.

I had no trouble getting Remicade at my current hospital, but admittedly I had a Crohn's diagnosis. Don't suppose there's any way your GI could swing it towards an indeterminate/Crohn's colitis diagnosis, could she?

Otherwise, dunno what I'd pick out of those 3. Probs tacrolimus.

Okay so now I understand methotrexate has to be used in conjunction with a biologic anyway??! So there's no point in that, no point in ciclosporin.... back to square one really.

I looked up the NICE guidelines and they said that Remicade wasn't recommended for use in subacute UC (ie, UC which doesn't hospitalise you). You may find a GI who is willing to prescribe Remicade anyway, but you'll probably have to search for one. Even with Crohn's it isn't always easy: my previous hospital would only give me Remicade for 3 goes - except in the end, they balked at even doing that and I eventually left that place in disgust.

Methotrexate doesn't have to be used in conjunction with a biologic! Any more than 6MP or azathioprine has to be. If AZA has helped you, then maybe MTX might. It didn't work for me, but then nothing did.

Just noticed you are on 100mg AZA, per your sig. That's a pretty low dose. You could easily try 150mg or even 200mg. Honestly, I'd try an increased dose of AZA before going onto another, even more toxic, drug.

NiceCupOfTea said...
I looked up the NICE guidelines and they said that Remicade wasn't recommended for use in subacute UC (ie, UC which doesn't hospitalise you). You may find a GI who is willing to prescribe Remicade anyway, but you'll probably have to search for one. Even with Crohn's it isn't always easy: my previous hospital would only give me Remicade for 3 goes - except in the end, they balked at even doing that and I eventually left that place in disgust.

Methotrexate doesn't have to be used in conjunction with a biologic! Any more than 6MP or azathioprine has to be. If AZA has helped you, then maybe MTX might. It didn't work for me, but then nothing did.

Just noticed you are on 100mg AZA, per your sig. That's a pretty low dose. You could easily try 150mg or even 200mg. Honestly, I'd try an increased dose of AZA before going onto another, even more toxic, drug.

Oh okay! I must have misunderstood about methotrexate and biologics. Maybe it meant it the other way round, that when you're on a biologic you should also be on metho...

Exactly, I don't think I'm anywhere near sick enough to go on Remicade, or any of these drugs really... I still have a quality of life even though my UC is persistent. That sucks that your hospital were so rubbish about it.

Yeah, I hope I'll be able to increase my aza, and I hope that helps. I know 100mg dose is low, but at the same time I don't weigh very much (45kg).

NiceCupOfTea said...

malaika said...
I am from London, and attend an apparently well regarded bowel specialist hospital, though I don't think they're particularly amazing. Today she told me that NHS coverage would probably only cover three inflximab infusions.

St. Mark's hospital in Harrow, m i rite?

Was with them for 5 years. Not because I went out of my way to go to a well-regarded GI hospital (had no idea of their good reputation at the time), but because I lived about 3 miles away and it was naturally my local hospital.

Utter crap. Zero interest in your case, zero people skills, zero communication. 1/10.

Yes St Marks! And same about it being fairly local for me :) I guess their reputation comes from the amazing research they did back in the day. Definitely not too impressed, but at the same time don't really know what they could be doing differently.

Me again....I don't know if this helps or means anything but when I did the at home Methotrexate injections it was used as my concomitant immune suppressant for Remicade. I never tolerated Azo well so it was thought that the Methotrexate would be the thing to prevent anti-Remicade antibodies. I think we're all saying the same thing :o) but that was my personal situation.

It would be interesting to find out - and I don't know the answer - how so many UC people being treated at NHS hospitals get the Remicade. But anyway it didn't do anything for me so I never investigated.

about Tacrolimus: it has unpleasant side effects but these may not be so bad if you can get away with a lower dose. I feel like I've had a lot of ickiness from it but there is no doubt in my mind it has stopped (mostly) my blood loss, when taken at higher doses. It's not the best option but then .... What is? The whole thing I believe is usually a compromise. Tacrolimus has allowed me to taper down to 5 mg Pred from higher doses in the 40s, 50s. For that I'm grateful. I think it's often overlooked because it's old and not exciting! But I think it's worth considering. You might not have the effects I've had.

I've spent way too much time worrying that I would have to take a certain drug that would "make me feel like this way forever". It took me a long time to realise that "sometimes forever is only 1 second". You can always stop taking the medicine if the side effects are unbearable. And sometimes it's about discovering what will get you through the next 1-5 years until things change: Remicade gets cheaper and becomes supported as standard practice by the NHS; Vedolizumab is approved by NICE; something that hasn't even been named yet comes onto the market. These options listed in your original post don't have to be your forever drugs and I wish someone had told be that :o)

How could I possibly have guessed? I must be a genius... >_>.

Thinking about it, five years was more like six years - not that it matters, but I'm a stickler for small details... Anyway for about five of those six years, they pushed various mesalazines at me that I could not tolerate and told them I could not tolerate. The GI didn't show the slightest bit of interest. Eventually they moved onto azathioprine and steroids, but that was five years in which my disease had progressed and gotten much worse.

Would love to go back to that GI and tell him how I ended up. He probably wouldn't even remember my face or name, but sod it: I'd get him to look at my early medical records in that case. Just would love to know if he ever thought I might one day need to have a colectomy. Because that hospital took absolutely no interest in my case: I guess my disease was too boring for them or something.

On another note, it's true that's there only so much which can be done - there aren't that many meds to choose from, for a start. I'm not angry at doctors for being unable to conjure up a miracle cure; I'm angry at their indifference. There's no concern, no interest. And, yes, psychologically it makes an enormous difference. My GP can't do an awful lot for me, but the fact he has my back just makes me feel so much better about having him as my doctor. I really dunno how he's managed to retain his humanity, when almost every other doctor seems to have lost theirs: just call me Guardian7. You're welcome.

Edit: Oops, my reply was a tad too late there.

The evidence for methotrexate therapy for UC just isn't there. It's a drug that gets pushed a lot, for many autoimmune diseases, because it is dirt cheap.

I agree that the AZA is your best bet right now. I think it's criminal that more biologics aren't available for UC patients through NHS.

I used Cyclosporine twice. The way that it was explained to me by my GI who I've used for 9 years and trust is that Cyclosporine is given to UC patients in a lower dosage and for a shorter amount of time than organ transplant patients who take higher doses and sometimes for a lifetime or until they switch medications. He told me that it is very safe in the dosages that we take and is an old drug with lots of clinical data behind it.

Cyclosporine works really fast, I was almost in remission in 4 days the first time and 7 days the 2nd time from really bad flares. I had very few side-effects from the medication, some minimal hand tremors, hot and cold temperatures I had issues with, other than that it was pretty good for me.

The 2nd time I used Cyclosporine was while I was on 6-mp for a few years and I flared. Cyclosporine knocked the flare out and allowed me to continue the 6-mp as a maintenance drug. A year later I decided to switch over to Remicade because of high LFTs from the 6-mp.

I had a Cyclosporine treatment and I do NOT recommend it. Just my personal experience but that crap is nasty.