Whst to expect with azathioprine: The hospital... - Vasculitis UK

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Whst to expect with azathioprine

miss-scarlett profile image
30 Replies

The hospital has taken bloods to see if I am suitable for azathioprine.

What side effects am I likely to have? I know we are all different but I suppose I would class myself as a sickly person especially to the cyclo and methylpred by drip.

I was hoping that I would have methtotrexate injection as the consultant originally mentioned injections and I understand it has less side effects given that way.

Can the azathioprine be given by injection?

I take pantoprozole which is similar to lanz and omprazonole.

Thank you for any advice given.

Anita

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miss-scarlett
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30 Replies
LynneJ profile image
LynneJVasculitis UKVolunteer

Hi Anita

I am on Azathioprine. No side effects so far. It is one of the mildest. I started by building up to taking 1 tablet 3 times a day but now I take 1 and 1/2 morning and evening. I was advised not to have methotrexate as I have fibrosis of the lungs and it can cause that.

I would ask for the coated ones though. The chemist changed them once and I felt a tiny bit queesy. They changed back and it is fine. I have been able to stop the Lanzoprarole as well now.

There are quite a few of us on Aza so you will get some more opinions I am sure.

Like you say we are all different but I think most people have a positive experience.

I have sent you a message re the packs.

Lynne

miss-scarlett profile image
miss-scarlett in reply toLynneJ

hi lynne

just to give you an update, had my final cyclo yesterday, change of plan they are not starting me on the azathioprine, they are going to give me rixumatub? have to go for councelling on Friday for it.

anita

ps thank you for bringing me the pack

PatriciaAnn profile image
PatriciaAnn

Hi Anita

Been on Aza for over four years. Sometimes it affects my blood results (liver function) but it isn't anything I notice. I take 50mg after breakfast and 50mg after dinner.

Other than that I've had no side effects. I do take Pariet (rabeprazole) for silent reflux/stomach protection which I had when on Mycophenolate and I've taken them since.

Blood tests every week for the first few weeks, when dose may be up'd or down'd a bit, then once a month since then.

Hope it works for you and that you have no side effects. If you feel that it isn't suiting you get back onto the doctor. Not everyone can tolerate all the drugs.

PatriciaAnn

miss-scarlett profile image
miss-scarlett in reply toPatriciaAnn

Hi PatriciaAnn

Thank you for replying. The ward doctor said a nurse will go through this drug with me.

I am glad you don't

have ay side effects so that is reassuring for me to hear.

I will tell the doctor if it disagrees with me. What exactly does it do I know they want me on medicstion so they csn stop the cyclo and reduce the steroids.

Do you have flare ups or has it worked and kept it under control.

Anita

miss-scarlett profile image
miss-scarlett in reply toPatriciaAnn

hi PatriciaAnn

I had my last cyclo yesterday and there is a change of plan, they are not giving me the azathioprine, they are going to start me on rituxumub? I have to go for councelling this Friday about it.

anita

Chris-Bromsgrove profile image
Chris-Bromsgrove

Hi Anita

I started on Azathioprine after my initial treatment. I was on it for about six weeks but it didn’t agree with me. I felt washed out and kept getting headaches (headaches are not a normal side effect for Aza). My consultant then put me on Mycophenolate which seems to suit me better. Azathioprine seems to be the preferred maintenance drug for ANCA associated vasculitis. It suits most people and my consultant told me it is probably more effective than Mycophenolate. Like most drugs Azathioprine has its side effects but it doesn’t necessarily mean you will get them. The main thing they check for when you start taking it is your liver function. Hope it goes well for you.

Chris

miss-scarlett profile image
miss-scarlett in reply toChris-Bromsgrove

Hi Chris. Thank you for replying.

If my results come back ok and they start me on this drug I will keep an eye open for the headaches.

I constantly feel run down and that is one if my symptoms before I started steroids and cyclo so hopefully that won't get any worse or I wont know the difference.

I hope your new tablets are workng well for you now.

Best wishes

Anita

laidbackreader profile image
laidbackreader

I have been on Aza since 2004. No problems really. I've had to have brief breaks from it when my neutrophil count has dropped too low. Splitting the dose between morning and evening sorted out the queasiness I felt early on. Hope it works ok for you.

miss-scarlett profile image
miss-scarlett in reply tolaidbackreader

Hi Laidbackreader

Thank you for replying, once I start taking it I will split the dose thanks for the advice.

Anita

suffolkgirl profile image
suffolkgirl

I've only just started on Azathioprine, 25mg per day, which seems low compared to what others report taking, but I guess this may be increased, depending on blood results. I've had blood tests taken this week and am due back to clinic end of next week. I don't have any obvious side effects as yet, so looking hopeful!

miss-scarlett profile image
miss-scarlett in reply tosuffolkgirl

Hi suffolk girl thank you for replying. That is good news that you are not getting any side effects and hopefully you won't get any.

Anita

quinnster profile image
quinnster

im on aza 150mg per day,when I was first given it ,I felt really ill and was taken off it

then my vasculitis nurse advised taking it at night ,and sleeping through the bad feeling,thats worked a treat ,and I have no problems taking it now

miss-scarlett profile image
miss-scarlett in reply toquinnster

Hi Quinnster thank you for replying. I don't know what dose they will start me on. Other people have mentioned splitting the dose but if it is a low amount then I will try it same as you at night.

Anita

AndrewT profile image
AndrewT

Dear Anita,

If it wasn't for azathioprine, amongst other drugs, I wouldn't be here! I haven't suffered any appreciable 'side effects' to date; the azo. leaflet will 'scare you to death', by the way!! I don't believe that azo. can be injected, I've never herd of 'azathioprine IV' anyway. Perhaps someone has??

Please do let me, us all, know how you get on; speak to your consultant about any worries that you may have and DO try not to worry too much, difficult I know!!

Best wishes to you

AndrewT

miss-scarlett profile image
miss-scarlett in reply toAndrewT

Hi Andrew. Thank you for replying. (sorry to read that you were/are so poorly) it is reassuring to know that it works and doesn't cause many side effects especially when other people mention splitting the dose or taking it at nght. I am trying not to worry to much, it is that I am tryingto prepare myself for the side effects so if they don't happen that is a bonus. I am hoping to return back to work soon but our occupational health want me to stay off longer to see how I get on with this tablet.

I will let you know how I get on.

Best wishes to you too

Regards

Anita

miss-scarlett profile image
miss-scarlett in reply toAndrewT

hi Andrew

I said I would let you know how I got on, well I had my last cyclo yesterday, but there was a change of plan, I am not going to be having the azathioprine now, they are going to give me something called rituxumub? sorry cannot get that name correct. I have to go for councelling about it on Friday.

hope you are getter better

regards

anita

AndrewT profile image
AndrewT in reply tomiss-scarlett

Dear Anita,

I have heard of 'Rituximab' but have never had it myself. If you read the 'Health Unlocked'/Vasculitis UK pages it is, quite often mentioned mind. Please do feel free to contact any of us again.

In the mean time please try to have a Happy New Year.

Kind regards AndrewT

miss-scarlett profile image
miss-scarlett in reply toAndrewT

hi i have had 4 lots of rituximab, 2 in 2013 and 2 in 2014, they made me really poorly and bed ridden, but the doctors just said i had an infection and nothing to do with it, but i disagree, as i had the same symptoms each time. it also taks a long time to get to work for me over 3 months each time. it did help my joints for the short while it lasted. i had it may/june 2014 and it is waring off now.

Wellsie profile image
Wellsie

I'm on 250mg of Azathioprine, taking 3 in the morning and 2 at night. I've been on it 3 months now and have not experienced any side effects.

I should however warn you that your urine may turn the colour of a yellow fluroscent highlighter pen. Do not be alarmed if this happens, it does appear to be a fairly frequent side effect.

miss-scarlett profile image
miss-scarlett

Hi Wellsie thank you for replying.

I think I can handle bright urine lol. I am glad you mentioned that.

It seems like this drug has the least side effects and most people take it same as you morning and night.

AMJM2002 profile image
AMJM2002

Hi, I have been on Azathioprine for 18 months after a serious bout of cutaneous vasculitis.

I have found little side effects apart from an upset stomach now & again and sometimes nausea.

Due to the extent of my condition my consultant has me on 250 mg daily which I split into 2 doses 100mg morning & 150mg at night.

I was concerned at first about taking such a high dose but my body has seemed to cope fairly well.

Good luck

miss-scarlett profile image
miss-scarlett in reply toAMJM2002

Hi Amjm2002

Thank you for replying. It seems that the majority of people split the dose between morning and night and have little side effects.

I find out on Monday if I am starting this medicine so hopefully I will as it seems to be better tolerated.

Good luck to you too for your health and future.

PaulBingham profile image
PaulBingham

Hi,

I have had Wegeners for 8 years with one relapse. Phase one was cyclo infusions which is pretty normal. Immediately afterwards I commenced Azathioprine which I continued with(plus prednisolone ) until my relapse at which point I tried Methatrexate and then Mycophenolate, both of which disagreed with me which led me to returning to a 225mg daily dosage of Aza.

I am very tolerant to Aza which seems to be doing the job.However,as I am sure you know, long term usage of strongish medication normally results in some side effects. In my case the only significant side effect is the development of Actinic Keratoses on my head ( sun damage type spots) which are unsightly and need attention with various treatment options depending on their seriousness.

I lead an active life with golf twice a week, many holidays, etc

All the very best

Paul

miss-scarlett profile image
miss-scarlett in reply toPaulBingham

hi paul

thank you for replying.

I had side effects with aza and was advised to stop taking it, I was on the minimum dose and it made me feel sick dizzy tired and poorly.

for several months I have just been on steroids, anyway I re started methotrexate injections last week, I h ad o top previously because they think it caused me to have pneumonia

take care and best wishes to you

anita

Jane1175 profile image
Jane1175

Hi . I was on azathroprine but had to come off it as my liver blood test came back to high.

AndrewT profile image
AndrewT

Dear miss-scarlet,

I was on Azathioprine, for about fifteen years, prior to a kidney transplant- I am now on Tacrolimus. I was also on Prednisolone, which I still am, along with other drugs. Despite the doctors/consultants being concerned about side effects, mainly affecting blood results, I suffered very few, if indeed any, side effects. Whatever you do, despite what the leaflets say, please don't read the possible 'side effects'. If you do you will have both high and low blood pressure, constipation and chronic diarrhoea (which sounds particularly horrible)- a little (I mean a little) constipation can occur mind you-don't worry it won't be bad. Along with 'rashes' (I don't know quite what type-I never had them!) Not too mention a whole 'host' of other things guaranteed to scare you shitless (cure the constipation anyway!).

The doctors/consultants will 'fuss around' like 'Mother Goose', for the first six months, or so. After this time everything will settle down, as will the doctors concerns. Basically really don't worry, no really don't- 'side effects' are possible but unlikely. If you do get any problems then speak to your doctors but I doubt that you will.

Loved the 'name', by the way, how's 'Brett'?

Very best wishes, Happy New Year

AndrewT

miss-scarlett profile image
miss-scarlett in reply toAndrewT

hi i had a lot of side affects with aza so they put me back on methotrexate, maybe i am a sickly person as rituximab makes me poorly too.

hope you are ok, my friend had her 2nd kidney transplant in january 2014 and she is ok, she has a drug called mycophenalate which my consultnt wants me to try, but i refuse as i am happy with methtrexate injection as side affects dont last long for me

happy nee year

AndrewT profile image
AndrewT in reply tomiss-scarlett

I'm on MMF myself, few side effects-slight, very slight, constipation.

Heyjude927 profile image
Heyjude927

Initially, no adverse affects then after 6 weeks, severe nausea and fatigue. 75 mg a day. In remission and dosage gradually reduced to 25 mg Monday, Wednesday and Friday because of nausea.

miss-scarlett profile image
miss-scarlett in reply toHeyjude927

thanks for your reply, it made me sick and poorly so they put me back on methotrexate

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