New Meds Azathiprine

[Angellealea1]

Hi all, I am starting treatment, now on a different meds called Azathiprine, anyone else take these & what are your experiences of taking this med?

many thanks

[jane1964]

Hi I started on Azathioprine about 5months ago I was worried at first about side effects but I have been lucky with no problems and my blood tests show improvement and I feel better than I have for years.I hope it works out for you too.Jane

[Angellealea1 in reply to jane1964]

Hi Jane1964, this is my thought too, side effects look awful, hopeful I'm one of the lucky ones too & if my symptoms impvore, then thats great!

Thanks for your message xx

[Roanna in reply to jane1964]

Hi Jane, I hope this change works for you. I started that med in 1991 when I started to get kidney symptoms. I took it with a high dose of prednisone for about a 2 year span with little luck on my kidneys. I went on cyclophosphamide iv soon after which kicked me into remission. Then I went on a low dose of azathioprine after for many years which kept getting lowered due to my blood counts. Then finally off to the big guns. The side effects don't just get you at the beginning you need to be aware of what long term effects will be like and monitor this throughout your life. Unfortunately we need these pills so we hope for the best. I have moved so many times that my records are in many different places and I'm not certain if my current Doctors have monitored me accordingly to long term side effects or if it's just to current symptoms. I have eye damage and hearing damage from a few of the meds I was on but at the time I was very lucky to be in remission for most of 30's and 40's. No matter what you go on just be pro active and be aware of side effects you need to watch for down the road sometimes the doctors forget to check stuff if you have no symptoms. I have been on only blood pressure pills the last few years and my rhumy would prefer me on something but my kidney doctor feels I'm ok for now. I have very little pain these days and bloods are always monitored.

May you feel better soon and know that on this site you are not alone and everyone's experiences will be similar but not. Even common lupus symptoms don't always mean the norm. I only get memory loss when I'm not sleeping well, but others say it's a part of lupus. I don't believe everything is lupus related although I know it can play a part. If one med doesn't work in a fair time ask to try another. You still have a few options at this point. Good luck and sorry for the story.

[whisperit]

Hello Angellealea1,

I was put on it recently and managed to work up to 100mg for about 10 days without any problems. Unfortunately, then I suddenly spiked a temperature and had to come off. After a few days I tried again, but got sick immediately. Same thing happened on a third trial.

I know that might sound off-putting, but I reckon it's better being aware (A&E thought I had sepsis at first). Plus, you might find it reassuring to know that the problems resolved as soon as I stopped taking it - no harm done x

[Angellealea1 in reply to whisperit]

Hi Whisperit, Thank you for replying, just makes you wonder if they hadn't upped your meds, if you might of been stable? Scary experience though.

I'm glad you haven't had any problems since stopping the meds.

many thanks xx

[AndrewT]

Dear Angellealea1,

Prior to my Kidney Transplant, well over four years ago now, I was on Azathioprine, 150 mg per day, for fifteen years. 'They' did keep, quite a tight, check on me, to begin with- the possible 'side effects' are crazy. However I clearly Tolerated it well, with few 'side effects', other than 'Tummy Troubles'- which are Normal, for me, anyway.

As with ALL, this type of drug, individual acceptance/tolerance/reactions are difficult to predict. That said, most patients, do NOT react badly- remember that:- even if 'one in ten thousand people' have a reaction it MUST be reported. I can't say, for absolute certainty, but I'm 'Sure' that you will be fine. If not, no doubt, Alternatives will be found.

Please do 'Let us know', how you get on, will you? Kindest wishes

AndrewT

[Angellealea1 in reply to AndrewT]

Hi AndrewT, thank you for replying. The side effects do sound crazy & that's what scared me a little, but then I look at my symptoms & I think, if I can just start to feel better, maybe taking a tablet might not be an issue anyways.

Yes I'll keep you all posted 👍

[Angellealea1 in reply to AndrewT]

Ooh did you take it in the mornings or evenings? People say you get less side effects if you take it in the evenings. x

[AndrewT in reply to Angellealea1]

I took them ALL, in the morning though, you can 'split the dose', I believe. Do let me, indeed us all, know how you get on, will you.

Kindest wishes

AndrewT

[bluebell99]

I took this some years ago to help autoimmune hepatitis. It worked extremely well I had no bad side effects and a good side effect was my head felt clearer which encouraged me to take and pass an OU degree.

The AIH is no longer a problem but after seven years on aza I had to give it up because of kidney cancer when I needed my immune system to help me fight it.

I have been assured by different doctors that this was completely unconnected so please do not let this put you off. I would go back on it like a shot if I was allowed.

Xx

[ecc_active]

Hi! I was on Azathioprine between 100-150mg daily for about ten years due to kidney disease caused by lupus. To be honest I had few side effects. Some nausea, muscle cramps, tiredness and Used to suffer badly with throat infections especially during the colder months but my throat has always been one of my weak spots so I think obviously with the reduced immune system from the azathioprine etc that’s what was causing that. Did get ill/strange bloods a couple of times and the dose got reduced on those occasions but all in all had a good experience with them.....until they stopped working for me recently but after ten years you can’t really complain. I’d take them back over some of these other immunosuppressants I’m on now any day! Good luck with them hopefully they work for you!

[Jessie_2014]

Hi there. I started azathiaprine about 7 weeks ago. I started on 50mg a day and am now up to 100mg per day. Like you I was absolutely terrified about the side effects so completely understand where you are coming from. I am pleased to tell you that other than a week of severe headaches I have been okay so far. I can't say I've noticed any major improvements yet but don't feel any worse and I guess these things take time. I really hope you have a similar experience. It's always scary starting soemthing new but I guess if we don't try we will never know! Wishing you all the best and let me know if you have any questions!