After Azathioprine & 6-Mercaptopurine?

[beth]

So, I've not tolerated either azathioprine or it's metabolite mercaptopurine. And I'm wondering what could be next? I haven't got long to wait before I see my gastroenerologist, on wednesday, so I wont exactly sit and stew. However I'd like to have done a bit of research first, forewarned is forearmed an' all that.

I'm not in a flare so I dont need prednisone or Infliximab/remicade. So I guess I'm looking at Methotrexate or Pentasa - Mesalazine. Any others, particularly used in the UK, I should be aware of?

Ta,
Beth

 

[fenway1971]

Have you tried 6mp at lower doses? My body accepts 50mg but nothing higher. It's working so far.

 

[beth]

Yup, it was low dose, 50mg, of Aza and 6-mp that we tried.

 

[fenway1971]

Bummer. I can't help you - although it looks like others have tried remicade, etc. which seems to be next step.

 

[beth]

One thing that we, Paul and I, have wondered is whether I could restart Aza and take anti-emetics to ward off the nausea, and if I'll get used to it after a couple of weeks so it wouldn't be a problem - as my blood tests have been fine apart from a transient blip on my potassium level.

Edited to add: just thinking aloud here really!

 

[My Butt Hurts]

Have you taken any of the sulfa drugs before? (Or maybe they are called ASA drugs? Not sure)
There are a bunch of different ones and I think they work in different areas of the body. Asacol, Pentasa, sulfasalazine, etc.

I'm not sure why it seems people have to get REALLY bad to start the biologics. Seems like if the other drugs have failed you, it might be something to start to ward OFF a flare, not just to get one under control. Dunno.

Anyhoo - good luck at your appointment.

 

[beth]

Pentassa - mesalazine, nope I haven't tried it yet. That's the one I know about. I'm wondering if there were others...
As for Remicade/Humira; I dont think BUPA (my private healthcare) will pay for them, and the NHS certainly wont as I dont fit the criteria yet - I'm just not bad enough. I'm asymptomatic and fairly stable too, although limited diet.

 

[Victory]

Hi Beth,

what kind of effects did you see when you take azathioprine before you give up?

 

[misscris]

Grr Beth. Sorry to see that Azathrioprine didn't work out for you. I actually haven't started mine either. Doc changed his mind and wanted me to get a couple updates on vaccinations before starting it. I need to call him though, I did the shots weeks ago. I keep forgetting to call him.

So what were your side effects? Was nasuea the only issue?

 

[beth]

Hmm, side effects were nausea, pain right across stomach area, dizzy. And occurred about 5 - 6 hours after taking. It's a right nuisance because in other ways it was doing good; the pain in my shoulder, jaw and neck eased quite a lot.

Hope you have better luck with it misscris!

 

[misscris]

Me too. If I can ever get on it that is. Still not on any medication at all. My job ended Friday, so I only have medical through the rest of the month and then I have to find another way. So ... I would like to get this going and hopefully it does good.

 

[Victory]

I have just started my azathioprine 4 days ago. 50mg each day.

I am also facing the same issue of nausea. On top of that, I got this heavy feeling of bloatness in my stomach, fatigue, loss of appetite as well...

I was wondering if these symptons are the initial stages of the medicine or could it be that the medicine is just not suitable for my body.

 

[beth]

Victory: I certainly got fatigue as well. Not sure about loss of appetite or being bloated. Mine came on after 3 weeks of taking it not immediately, so it might just be getting used to it. Talk to your consultant!

misscris: Oh dear. I dont think Aza is expensive so presumably you could get a script and pay for it yourself? Dunno your system over there!

 

[Agent X20]

Hi Beth.
Mesalazine (Asacol) was the first thing I was put on. It worked very well for me for a few years. I'm still on it as the doc thought I might as well stay on. Then I've been been on Azathioprine for over two years now, but not noticed any side effects

 

[fenway1971]

beth,
that's odd that you haven't tried the ASA drugs. they're usually prescribed initially as they are weakest and have least side effects. i can't take them - i'm hypersensitive (they make diarrhea worse for some reason). but, you should definitely try them.

miscriss/turtle,
look into cobra. they'll extend benefits for up to another 12-18 months. good luck with docs.

 

[misscris]

miscriss/turtle,
look into cobra. they'll extend benefits for up to another 12-18 months. good luck with docs.

Yeah, the employers gave us the cobra packet, but apparently you only qualify for Cobra for as long as the company is in business. So at best, they might still have a technical name while collecting payments for 3 months max. So I can sign up for it and take it for now, but then I'll be out of luck.

 

[beth]

And the lucky winner is... Methotrexate.

 

[BP_57]

I'm also surprised you haven't been given any ASA drugs yet, as already said they are usually tried first as they're safest. Asacol is used in the UK and there's a newer one called Mezavant XL (which I take). Same drug but you only have to take Mezavant once in the morning rather than 2 or 3 times a day with Asacol.

I guess there must be a reason why your doc has opted for Methorexate though so good luck with that anyway!

 

[beth]

I guess because of the severity of the inflammation on first presentation. And he's concerned that I'm showing both inflammation and possibly 'tightening' in the region of the ileocecal valve, whilst being otherwise asymptomatic. The message he's giving us is we have to hit the disease pretty hard now to give me a chance it doesn't come back to bite us later, as it might in my case work away doing damage without letting me know until it's too late, with only surgery being left as an option.

So I didn't ask about ASA drugs. I did about humira and infliximab; he said it would be a little OTT at the moment and best to have them in reserve for later. The risk vs benefit see-saw points at methotrexate for the moment.

 

[beth]

Apparently it'll be oral, once a week - it's important not to take it every day - there was a fatality locally where someone made a mistake and took it everyday.

Regime is something like. MTX on monday, and folic acid on friday... easy to remember.

 

[beth]

Given my failures with Aza/6-mp I intend to try mtx on a weekday so I have fast medical response! - I'm not working at all since I was made redundant april last year. I have other medical things that I have on monday's so it fits in nicely.

Apparently the fatality was a series of mistakes: the 'script said something like 'take as directed' and the patient assumed this meant daily. Afterall that's how most drugs are taken isn't it. Apparently all the computer systems were modified so they didn't allow that wording for it. ditto pharmacists 'standing orders'.