Azathioprine

[woosey35]

It seems that my daughter may have to begin taking Azathioprine due to a life threatening immune condition. It’s kind of crept up on us, with her deteriorating so much over the course of the last 6 months.
She’s on soooo many different drugs each day. Her specialist is now saying she may have to go onto azathioprine.

I’m wondering anyone has any info on this. I’ve searched on line and have read the scary side effects (despite her specialist telling me not to!!).
Has anyone got any personal experience??

I got moved onto Azathioprine as an adult, having developed Chrohns/Ulcerative Colitis in my teens.

It’s been by far the most successful and low impact treatment I’ve been on in my 17 years of varied regimes (in which time I’ve had 5 surgeries and around six months of hospital stay).

I’ve had no side effects, I now just need a blood test every 3-4 months, though they are more frequent when you first go on and, whilst they fiddle with dosages.

Note that it takes a couple of months before the treatment has effect so be patient when moving onto it.

Obviously, different drugs work differently for different people, so I’d certainly not say I’d expect your daughter to have the same. But don’t be put off giving it a go.

Crohn’s not Chrohn’s - you’d have thought I’d have learnt how to spell it by now...

Thanks so much for your quick response. What about hair loss. She’s 9 and it’s a worry for her. Know that sounds vain maybe to some people but she’s really struggled with fitting in as she’s been on maintenance steroids for 7 years and is hugely steroidal to look at and very rotund bless her. She just wants to look ‘normal’

Hi I take it for my ulcerative colitis- the only drug that I could tolerate. I have been on it for 10yrs now.

When I first started it I did experience hair loss but (apparently) not noticeably - I had been quite unwell however and hair loss can occur for some months afterwards anyway. It is a worry of mine, but know the although it comes out it does grow back & I have lots of regrowth around my face.

I have bloods every 3 mths - my white cell count is low but not dangerously- susceptible to more throat infections in the winter but never hospitalised due to poor immunity. I always have my flu jab.

I am currently very sun sensitive- I have a rash on my arms caused by exposure to UV - I mostly stay in the shade/ cover up & wear factor 50. A lapse causes the rash & we are currently on holiday in France.

Azathioprine gave me back my life after being diagnosed with the UC

Took it for arthritis as an adult for a year. Worked very well and we've into remission.
Had a far bit of hair loss but have thick hair and was not noticeable.
Immune system was down a bit but overall very well tolerated.

My consultant also told me not to look at the side effects - they are truly frightening but it has totally worked for me. I am on a very low dose & mostly fine with it. That said, I am trying to be convinced to have a break from it & I really don't want to

Tbh, I never look too closely at side effects listed - so I’d not heard about hair loss as a side effect.

I’ve not suffered any thankfully!

True about side effects. Quality of life is important too.
If you read the side effects of aspirin or paracetamol you would be reluctant to take them too!

Is it WG (the old name for it)?
Dc 1 is in remission now, tried MMF but was non-compliant with taking the drugs (teenager!) so switched to azathioprine. It didn't suit them, but it works well for some people.
Rituximab did the trick for them - have been antibody negative for about three years now.
If this is the case, let me know if you need more info. (Dc was very worried about losing hair, but never did on any treatment, but did gain weight from the steroids, about two and a half stone in total. It gradually came off when off steroids.)

Thanks all. That’s really reassuring.
Mineof- I don’t know re Wg?! Glad to hear that your dc is currently doing well. That’s great news.
We will know I’m a few weeks if this is the route we need to go. Currently the steroids are wrecking her body. So sad to see

Thanks all again.

I’ve been on it for nearly 10 years (for Crohn’s) and haven’t had a single side effect that I’ve noticed. Yes, the listed side effects are scary, but they are required to list them all even if the chances of developing them are close to zero!