Azathioprine: If everything went well with blood... - Behçet's UK

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Azathioprine

samhawks profile image
12 Replies

If everything went well with blood test I shall be starting this treatment on Thursday , Not sure I've got my head round it , Any views on this drug please ?

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samhawks
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12 Replies
billi profile image
billi

Hi Sam, this is one of the drugs I was given even before diagnosis. This was 20 years ago but this is what I remember.

I had to go to my GP every couple os week or so to get my blood tested, I had no side effects, it didn't make any difference to my symptoms and I was taken off it after 4 months.

When I eventually got a dignosis after 12 years I stRted on Colchicine which for me was amazing.

I know this info as I kept and still keep a diary of my journey with BD.

Just keep in mind......we all react differently even to the same illness, we also react differently to all the midications and what works well for one person maybe doesn't for another. It is trial and error at the onset but please at least try the meds for a month as our bodies also take time to adjust to the meds.

One more thing although it was a long time ago just check that it is still neccessary to have these blood tests with your GP!!!!

Hugs andSmiles

Billi

samhawks profile image
samhawks

Hi bill thanks for Reply Ive been taking colchine for 6 months and it was great but has begun to do half the job now , but I'm told I will stay on it anyway as it's working a little , I will just hAve to wait and see just worried that will 6 children I will catch every bug they get , I get sick enough

Many thanks and good wishes

lovenothate profile image
lovenothate

Hi Sam, I started on Azathioprine 5 weeks ago. First two weeks on 50mg daily, then two weeks on 100mg and now I'm on 150mg daily. I am told that you don't expect any benefit from it for around 10-12 weeks so its too early for me to say whether its going to help me. Blood tests are every 2 weeks for the first 3 months and so far mine show that I am tolerating it well. I know that side effects are very individual, but for me it has been nausea and diorrea for the first few days after each dose increase, then it seems to settle. The other thing for me is the tiredness... From about an hour after taking them I just want to fall asleep... So I have changed to taking them with my evening meal and I have slept better at night as a result :) I hope my experience is of some help and give me a shout if you want to ask anything anytime. Good luck!! Will x

Roxybaby profile image
Roxybaby

I was started on Azaphioprine but developed a very bad rash and had to stop it immediately so unfortunately I couldn't tolerate that one but am now on Mycophenolate and colchicine but still not under control for me. As Billi said every drug works differently on others so try not to worry too much, just make sure you have the blood tests when required :).

Hi Sam,

I have been on Aza for around 8 months now and apart from a bad flare back in March I have been pretty well on it. I was initially started on 25mg twice a day, then increased to 50mg twice a day. After having the flare it was upped again to my maximum dose of 75mg twice a day. I take Aza along with Colchicine, which seems to work well for me. The only down side is I have to have blood tests every 2 weeks even now because my white blood cell count drops a bit too low sometimes. Usually blood tests are done every 2 weeks at first, then they can be done monthly,and then 3 monthly basis if everything is good for you.

As for being tired.... I think that is just part of having BD rather than taking Aza. Unfortunately having a chronic remitting illness is going to take its toll on us one way or another!!

Hope Aza works for you. Remember to be patient with it as it usually takes a while for you to begin to feel the full effects.

Good luck.

C x x

samhawks profile image
samhawks

Thank you all for your replys , I shall let you all know how it works for me x

chocalatedog profile image
chocalatedog

i have been taking this sine last november ,i think it has helped some especially the ulcers there has not been really any improvement in the joint pain ! but i am still only on a low dose so i am hoping there will be more improvment when they up the dose ! make sure you have monthly blood tests to check that azathioprine isint affecting you liver !

jellybean67 profile image
jellybean67

I tried it about 2 yrs ago and it made a massive difference and I remember feeling very well. Unfortunatly it sent my bloods haywire and I had to stop it, I was gutted. I tried to go back on it very very slowly but again my bloods altered too much. I am now having Infliximab infusions. Hope it works for you xxxxxxxxx

Kerry1 profile image
Kerry1

Hi there, I started the drug in July and just came off it as it did nothing for my symptons, truly gutted as I tolerated it really well, starting on methetriate tomorrow And I'm very nervous bout it. Hope it goes well for you big hugs xx

Michja profile image
Michja

Hi my 11 year old daughter with BD, started on colchicine that initially worked well. After a flare that lasted for a full 9 months & spending 3.5 months in hospital, she was started on 83.5mg Azathioprine, Celebrex and acimax. Due to eye pressure & uveitis the specalist started her on IV Infliximab, which has saved her sight. The first week on Azathioprine she felt a little sick but improved and I'm truly not sure if it helped. She is still on it as the specalist thinks its doing its job and I trust her. My daughter this winter has caught so many viruses but we have stayed out of hospital. The specalist has bought forward Infliximab to 6 weekly not 8, so hopefully we may just have the right balance.

I agree that all medication reacts differently for every individual. Good luck.

MrsR_75 profile image
MrsR_75

Hi

I started Aza early September. 50mg daily, have increased to 100mg, soon to be 150mg. Was very reluctant to start due to side effects. Neurologist said without it though I'd be much sicker. No side effects so far. No big changes either though. Am on Pred too. Will taper off in early December hopefully.

Good luck.

katiep profile image
katiep

Hi Sam,

I've been on 125mg of Azathioprine for almost 2 years (ramped up at the beginning) - it's so good I've almost forgotten I have Behcet's! Would highly recommend: no side effects, and after being on 60mg of predisone it's a lovely change. Blood tests every 2 months, I've had no adverse effects. Good luck!

Oh yeah, only reaction I had was feeling queasy in the mornings straight after taking them, switched to taking them before bed instead, and now it's all good. :)

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