Worried Azathioprine has stopped working

[vickyhunter]

Hi everyone,
I've been on aza for 6 years and it was brilliant up until a few months ago when I had a flare up. I had steroids and an increase in dose of aza from 75mg to 100mg and it seemed to work itself out but about 2 weeks ago I started having symptoms again and I'm worried it has stopped working for me/stopped being effective.
I was just wondering what should I think in this situation? Has anyone else experienced this?
also, the dose is 'theraputic' for my weight and height (5"1 and 112lbs) so the doctors say they would be wary of increasing it more.

xxxx

 

[Thunderous Finale]

Hi Vicky...Aza stopped being effective for me also after several years, but there are alternatives!

My consultant advised that there are several options available when Aza becomes ineffective.

Ask about these and keep your chin up!

Look forward to a happy healthy future...all is not yet lost!!!

Best wishes,
Mark.

 

[vickyhunter]

Hi mark, what did you do then? Which alternative did you go on?
I'm just worried, I know there's tons of medicines out there, but it's more fear of the unknown! Aza has loads of side effects but over the years they become less scary so going on a new drug with a whole load of new risks is a bit worrying But like I said, more fear of the unknown than anything.
Thank you for the reply
xxxx

 

[Thunderous Finale]

Hi Vicky...I ended up having surgery and then after that didn't take any med - apart from pred to control any flare ups.
My consultant mentioned Crohn's med recently - rattling off various names and, of course, I can't remember any of them right now...but I will be seeing him on 14th June with a view to starting on a new treatment.
I'll let you know what I start taking then.

Hmm...perhaps I shouldn't have started this post with saying I had surgery - sorry if that's worried you! It doesn't automatically mean that this is going to happen to you; I was a fool in that I let things get out of hand, not seeking the medical help that I should've, until it was a bit too late. I know, I'm an eejit! x

 

[vickyhunter]

Haha thanks mark! No seriously, it's okay I don't think I'm at that stage yet...hopefully, touch wood!
I'm more worried because I'm at uni so I don't want to go on new medicine and possibly have it disrupt my life (obviously I know everyone has to deal with this, but I'm only 19, only just started living on my own! so I'm used to having my mum there etc when big things like going on new medicine would happen) Hopefully I can sort it out over summer though
Thanks for the reply though, it's nice to hear other people's experiences, good or bad
xxxxx

 

[Thunderous Finale]

Glad you've got a sense of humour Vicky - it sure helps when dealing with this illness!
I can understand your concerns about maybe starting a new med, and at just 19 you're way too young to have to deal with this kind of thing.I'm more than twice your age so you have my every sympathy.

Anyway, Aza is an immuno-suppressant and I used to get loads of colds...any germs within a few hundred feet would get snorted up my nose and, yes, you've guessed it, I would have yet another bloody virus!

This went on for years so I guess Aza was doing its job.

Then eventually I realised I hadn't caught a cold for a couple of years, so that would, I'd imagine, be the point when Aza became ineffective. Maybe?

Perhaps it's something you've been eating that has affected you recently?
Missing home cooking? Having not-so-healthy foods perhaps? Or maybe that's not the case!

I have had many thousands of mg. of pred over the last 20 years and, this will surprise you, a bone density scan in 2000 revealed my bone density was normal.
Another scan in 2010 revealed it was "better than normal!" It had actually increased! Tough sod I am!:ylol2: No worries about pred side effects for me then!
I do take an Asda calcium tablet each day when I'm on steroids though...nothing fancy and they're quite cheap and, obviously, do work.

You say you've only been on steroids four times? That's nothing, it really isn't!
Perhaps it would be best to stay on Aza and treat with pred as and when required? A med change for you may be years away yet...but only you know your own body.

If you do decide to mention to your consultant that Aza may have become ineffective, and you start taking something else...I've learned through experience not to read the side effect leaflets. I have high blood pressure also which requires medication each day, and I read the leaflets with these drugs upon receipt.

Big mistake!

A dumb-ass twonk like me can imagine that I have got every side effect going...when in actual fact I'm not being affected in the slightest...apart from in a beneficial way!

My advice would be to enjoy being on a reducing course of steroids, as and when you feel you need to. And only consider a med change if you find you are having to continually "up" your steroid dose after decreasing it, as you keep becoming unwell. If you can't get off the steroids perhaps that's the time to see the hospital consultant...until then, and it might never happen, try to concentrate on being 19 and enjoy uni...wish I could have my time over again!:hug:

 

[Ian]

Hi Vicky,

Sorry to hear the Aza seems to have stopped working, do you think exam stress set everything off? How bad are the symptoms? Hope it’s not too bad of a flare and you get through your exams okay!

Are you on steroids again now? Maybe another course of those and a nice long relaxing summer will do the trick. If not, your doctor may suggest moving to one of the biologics; either Remicade (Infliximab) or Humira (Adalimumab). Both are a bit of a pain when you're away at Uni, as the former requires you to have infusions as an outpatient at hospital (several per year) and the latter is self-administered injections that need to be refrigerated (not great for a shared student house, maybe get a mini-fridge!). But for most people these drugs work wonders, so it's usually worth it.

If you ever end up having Remicade at Warwick hospital rather than at home, I can tell you the nurses in the Aylesford Unit (where they do the infusions) are lovely and it's a pretty cushy set up; you get a nice comfy chair, tea/coffee and biscuits, and they have TVs with built-in DVD players to help pass the time - you're there for about 4 hours each time so at the very least bring a book lol. Make sure your doc keeps you on Aza if you start Remicade though; I believe it helps to prevent you from developing anti-bodies which can either render the drug ineffective, or cause you to have an allergic reaction to it. Plus research has shown combination therapy (Aza/6MP + Biologic) tends to be more effective than one or the other on its own

 

[vickyhunter]

Thanks for the replies !

Thank you for the advice Mark, the same has happened for me too, I haven't had a non-Crohn's related illness in the past couple of years so aza mustn't be doing the job well enough?
And concerning the food I eat, I eat mega healthy ! I'm a vegetarian and a bit of a health freak which nicely leads me onto why I don't want to be continuously on steroids for the rest of my life. I like being the size I am and I don't want to be bigger (purely vanity, I know this is silly) so if I'm on steroids I like to be on for as little time as possible. Also, Ian, I am on them at the moment just to get me through my exams. And the exam stress.. erm, I don't really get "stressed" to the point where I make myself ill. eg I've been through 11 GCSE's 5AS's and 4Alevel exams and not had a flare up so I don't think it's that.

This might sound weird, but the fridge at uni is reaaaally mouldy at the back (my flat mates are gross, and cleaners refuse to clean it and I'm not touching mould haha) and do you think breathing that in when I go to get my food could possibly "set off" my immune system into being overactive? I'm clutching at straws though because I seem to be fine at home and then it's like a light switch on and off when I come back to uni :/

Wow those infusions sound like some dialysis treatment or chemo :/ It sounds really scary!

I miss the days when I was in remission and didn't have to think about these things :'(

Do you think a combo of 6MP and aza would be effective?

xxxxxx

 

[Ian]

I have no idea about the mould, but even if that's not what's responsible, it can't be good in general! I know how you feel, mine were gross too and it didn't get much better when doing the house share lol. Are you living with cleaner people next year? Sounds like it will be good for you to get home for a bit, although I'm glad you're not feeling stressed with exams. Hope you don't feel too ill during them, are the steroids working?

They actually administer the infusions at the same place they do chemo, I saw people having it while I was having Infliximab. But it's nowhere near as scary as it sounds; allergic reactions and side effects are possible, as with all drugs, but they're not too common. I didn't have either. It felt no different to a saline drip The only thing I felt was bored lol. So try not to worry too much if you have to go down this route.
They use 6MP OR Aza, as they are essentially the same drug, so no they wouldn't use the two together. But taking either Aza or 6MP with Remicade or Humira is meant to be effective.

Do you have an appointment to see your GI once you're home? Hope you can get back into remission soon and have a nice summer!

 

[vickyhunter]

Thank you Ian, yeah I've been referred to see a consultant as I changed from my old one because he was basically an arse and dismissed everything I said and wasn't very nice to be honest. so I'm seeing this new guy and I don't know what he's going to say. I suppose if it keeps me well then having infusions a few times isn't too bad, better than steroids. I might ask what he thinks about it when I see him.

also while we're on the topic, generally how long to people have to wait for appointments for their consultants? Like when the say "i'll see you in so many months" because mine said 12 months last time and I've found it impossible to make an appointment with anyone concerning my recent flare ups yet as referrals take 2 months :/ I made an appointment with the hospital near uni and by the time I got that I was at home on easter holidays haha. just wondering if anyone else has this problem with having to wait ages?
xxx

 

[Thunderous Finale]

I guess it depends on the different health authorities...I spent a night in a Telford hospital last week, and "escaped" the next day.:ysmile:

I rang my regular hospital, explained I needed to see someone ASAP and got an appointment for less than a fortnight...pretty good going and damned good service!

 

[vickyhunter]

wow 2 weeks? that's just un heard of where I go. I;m looking at waiting 2 months for a referral and then probably an extra 4-6 weeks for the actual appointment.

When I last got referred (flare up was at uni so was made for the hospital near that, not my local one as talked about above) I had an emergency referral and got a letter back in a week and a half, but then the appointment was for a month later, so what's the point in this "emergency referral" system?!?!

It was much better when I was at my children's hospital (was there from being 7 to 17) if you were having a flare up you could just come in on the ward, it was brilliant thinking back, they care more to be honest, having experienced both adult and childrens hospitals

xxxx

 

[Ian]

Hi Vicky,

Not really sure about waiting times for referrals and consulations etc. In my experience when they're not an emergency, they take several weeks/a couple of months which is annoying. But if I desperately need to see someone I email the IBD nurse and she normally gets me an appointment within a week. Was it Warwick hospital you got an emergency referral to? (and did you go in the end or not bother because you were at home?). If so, I'm sorry it took so long. They've been really good for me. But maybe things took longer because it's not your regular hospital? I never went to Bournemouth hospital while at Uni, I always just took the train to Warwick and turned it into a weekend stay at home lol. The HC2 certificate lets you claim travel expenses for hospital appointments etc so I could always get a refund on my train ticket!

 

[vickyhunter]

Yeah it was warwick hospital, I was getting quite ill as well so it was really annoying And yeah they got me an appointment within 2 weeks or so but then it was for the next month which happened to be the end of term so it was too late considering how ill I was as well, so I just had to go on steroids until I got home and it seemed to sort itself out... ah well.

I've been referred to my home hospital though so hopefully that will go okay.
Grrr, it's like there's nothing in place for young people with Chronic illnesses who are at uni and will be living in 2 places.

So how do you feel with humira then? When you say you take it weekly does that mean you do it yourself or do you go to the hospital?
xxxx

 

[spingirl]

I take Aza and I also take Asacol HD - I think that is like the 6mp...isn't it? That combo is working well for me. With the exception of joint pain and a bit of fatigue -as far as my flare its been good. I am 5'1 and about 125lbs and take 150mgs a day. I wonder if they could up your dose just until your flair is under control. I weigh more but not that much more...I have thought about lowering my dose (or asking to) to 100mgs to see if the joint pain subsides but I am just so afraid of another flare.

I see my GI every 3 months for a check up. When I was facing possible surgery - I needed a 2nd GI opinion and my Primary Care Doctor got me in within a couple of days to a really great GI doc. Colonoscopy was scheduled just the following week. I think its very different here in Massachusetts. Even from other parts of the USA. I hear stories of people waiting such a long time. If I am making a check up appointment I can have to wait a bit but if I say I am in pain or having an issue - I get right in. If not - I would change doctors. I love my GI doc though. He's been seeing me since 1985 so after a while you will have a relationship with your docs and it might get easier. They will know you are really sick when you say you are...they get to know you. Good luck. I hope you are feeling some relief. What are your symptoms? D? I also take Immodium as needed. I use it mostly in work because I can't keep running to the bathroom. Its embarrassing. I can take up to 4 tablets a day but I usually just take one in the morning. Keep us posted. You are so young to have to deal with this. I feel bad. I am allergic to mold so I am not sure if that would cause a flare but it could be altering the medication? That is what I first thought of when I read your post. I have no idea really but it sounds like it could be it. See what happens when you get home. Breath some fresh air!

 

[vickyhunter]

In the UK it's quite different, I went to a childrens hospital 2000 - 2009 and have gone to an adult hospital since and in those 11 years I've 7 different doctors :| So it's quite hard to maintain a relationship.
also about the mold, my boyfriend found an article on the internet about a link between flaring auto-immune diseases and mold, so I think the sooner I go home and leave my hideous uni fridge the better!
Yeah I might ask them to put my dose up, but they may be wary of it though because my dose just went up from 75mg to 100mg.
My mum takes asacol (not HD, just asocol) and she has ulcerative colitis. I was on pentasa, which is similar, for the first 4 years of my disease and it just did nothing for me, I had the two biggest flares of my life.

thank you for the reply, it's nice to hear other opinions
xxxx

 

[spingirl]

You mum has intestinal issues too...my dad had them...I pray my son doesn't inherit that part of me! Asacol didn't do anything for me and I dont think the HD really does either but my GI likes me on it...? I'm just getting so tired of the body aches. I really need to sit down on this forum and do a little bit more reading about the different medications. I don't want to go next to remicaide. That is like the big one I think. I don't know why I can't try other ones...but before I ask I need to educate myself because my GI, as much as I adore him, can be stubborn. If I didn't demand it - I would still be doing Go-lytly preps for my colonoscopies!!! Keep us posted on your outcome. I am curious what you end up on after this Aza.

 

[Thunderous Finale]

Bowel disorders are definitly heriditary...my sister and a cousin have Crohn's
while my mum and and an aunt had bowel cancer...
It's in the gene's!!!

And the jeans!!!!!!!!!

On occasion!

I'll get me coat!:shifty-t:

 

[McStew]

Vickyhunter -
I'm in the same exact boat. I'm in the middle of another flareup, I've been on Imuran for the last 14 months (without a flareup during this time), and my consultant just told me yesterday that he suggests I go on Himura. He told me that because I got a flareup while on Imuran that it means that it doesn't work, and it most likely won't work. He gave me a few options - to stay on my current dose of Imuran. To go up to 75mg (having to get my bloods done weekly), or to get on Himura. I'm currently on 40mg of steroids for another week, then will taper for the next 5 weeks.

I'm on a very low dose - 50mg, because last summer my white blood cell count dropped incredibly low (it used to be 75-100mg).

Is this really the case with Imuran? All or nothing? It either works or it doesn't? A person can't have a flareup every once and a while when on Imuran??

I was also under a tremendous amount of stress during my current flareup, so I know that it has to do with this. I just don't want to get on Himura. Getting on injections makes me feel sick to my stomach....

 

[vickyhunter]

Thank you so much for your reply McStew, it sounds like we are in exactly the same position which is almost comforting. I'm scared too about the possibility of going on something else too, especially requiring injections :/
I suppose the doctors are right, if we are having flare ups it's obviously not working is it. My mum is on azathioprine too and she is having a flare up at the moment, must be something in the water haha!
I'm on steroids too - cam't remember if I mentioned that above - I'm coming off them when I finish my uni exams though, I hate being on them.
I've not had a problem with my white counts being too low so do you think my doctor will just bump up my dose?
Nice to hear someone else is in the same boat, thank you
xxxx

 

[McStew]

I can definitely relate! A mix of feelings, emotions and uncertainty, that's for sure. I know for myself I want to make the best, most informed decision about what goes in my body...but figuring out what to do is stressful (...which of course isn't good!). Plus, I feel like Humira will make life more difficult - especially travelling (and even as you said, simply putting it in a clean fridge!)

I'm on steroids too, I don't like them either. I appreciate we can relate. I try to remind myself that we won't be feeling like this forever....just temporary.

xx