advice please

hello everyone!

i had my hosp appt yesterday and saw my rhuemmy nurse (which im pleased about as my specialist isnt helpful) i took with me a list of new symtoms (even the little ones) as in the past i didnt think i should mention them. she listened and and then prescibed AZATHIOPRIN

do you take this please? what are the side effects?

ive been advised not to start this new med until new year as if i suddenly vomit the GP surgery and hospital will be closed over xmas. im to have a blood test 2 wks after starting and then every month to check..what are they checking for? what "job" does this drug do please?

im to see my rhuemmy again march '13 to check meds have agreed with me etc.

im still to take my 200 plaquenil daily,iron and vitamin suppliments. B6 vits. and now been advised to take glucosamine sulphate as ive irreversable damage to my knees caused by wear and tear which she was suprised by as im 40 yrs old.

sorry to bombard you with questions but im reluctant to put drugs/chemicals in my already knackered body, and to be honest im a little scared too.

any advice would be gratefully recieved, thankyou x

12 Replies

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  • Hi cc, I have just written a bit about azathioprine on ursi's 'curious' post. As I understand it aza is a steroid sparing drug, so it's another immuno-suppresant but with less long term side effects than prednisolone. You will need frequent blood tests at first to see how you react to the drug. It can cause your white blood cell count to drop or effect your liver, but these are reversible if they do happen & the doctors will adjust the dose accordingly. You will start on a low dose & gradually increase to that which is suitable for your weight.

    I tried it last year & it worked really well at first, my SCLE rash disapeared for the first time in years & my fatigue improved noticeably. I was ok for 1st dose increase, but at 2nd & final one I started to get abdominal pain & IBS symptoms & had to stop the drug. The rheumatologist had never know this happen before, so please don't let this put you off trying it because otherwise I would still be on it, as it really did help me.

    I seem to be one of those people who are sensitive to many kinds of drug, as the same thing has happened since then with mycophenolate, plaquenil & now even with ibuprofen. I am going to ask my rheumy whether it's worth trying the liquid form of aza or mycophenolate to see if I react better to these. So it will be interesting to see what other responses you get.

    My advise would be to give it a try, it could be the drug that really makes a difference to your symptoms. You will be monitored carefully for possible side effects, & if you do react in any way get in touch with your rheumy nurse for advice asap.

    Very best wishes, & let us know what you decide & how you get on. x

  • I can't believe you have been prescribed this without, apparently, having had a test for TPMT (which you need in order to tolerate Azathioprine and which about 30% of the population are lacking).

    I'd ask for a TPMT test before you take it as it can make you very ill indeed - can be life threatening, if your body can't tolerate it.

  • I agree this is serious matter, my mother was put on aza for her chrons and ended up with bowel cancer brought on from taking aza, luckily after many opps and treatment she is on the mend, although very poorly still so please be careful and make sure you have regular blood test like my mum did thankfully that's how it was picked up xx

  • Maggie what is the test TPMT I have been on Azathioprone for years and i cant remember such a test. What does it stand for Caz59

  • dear maggie, i had a blood test yesterday after my appt it did have TPMT written the slip,i didnt know what it ment,sorry forgot to put that info in my question. having brain fog alot lately.

    thankyou for all replies.

  • i was given several blood test slips ready for when im taking this new med ,i asked her if i needed a test today and she said "can do" so i did. she NEVER said th intials TPMT were to test for tolerance BEFORE taking this med!! o crickey,im so confused why wasnt i told this important info? my brain fog is clearing today so i can recall more info that day.

    ive accepted all the many symtoms lupus gives me everyday; fatigue and joint pain being the worst but also visual migraines,stinging patches of skin when even clothes hurt,visual migraines,mouth ulcers,nose bleeds,brain fog,slurred speech, forgetting what im saying mid sentance,weak heavy legs,dry eyes when waking up...............to name a few. but ive mild lupus,she was reluctant to give me anything.

    i politely refused antidepressants last year and my rhuemmy was very rude and said id never get better.

    on my last doctors appt about another issue (non lupus) he left the room for a minute or two and the pc screen was facing me,it was my info so i took a quick look to see my sle specialist had said " i self medicate" i DO NOT, i take iron,multi vits,vit b6 and now will start glusimate (cant spell) these will help me stay healthy as i can be and pain relief so i can work.

    ive had lupus since 2005 and i am slowly accepting it,and all its symtoms as they are "normal" even though the list keeps growing.i pace myself and can now only work part time,i have lost friends and family as they see me as lazy and putting it on, im a tuff old bird who has to fight to get through each day. they shoud spend a day in my shoes and id make them eat a big slice of humble pie!

    shall i not take these med? dont know what to do:(

  • perhaps just taking plaquenil will be ok, i should tuffen up a bit more and accept the new symtoms? as they say lupus has many symtoms and i should learn to live with everyone.

  • Hi there, I fully understand how you feel, I've been diagnosed with vasculitis, lupus nod APS on top of already being type 1 diabetic. It's confusingly the symptoms are naff with exhaustion being so hard. I always get role saying "you look well" and I sometimes think do they think I'm not ill. But like you say they don't have to wear our shoes, constant headache, exhaustion, loss of strength, loss of speak, not being able to remember, last year when writing Christmas cards I forget my sons name (that was really upsetting). Anyway sorry back to the azathioprine, I take this drug and have done so since about 2009, I can't recall a test for TPMT (but that doesn't mean I didn't have it). I was started at 50mg, and moved up to 100 and then 150mg, the drug is based on weight (my normal weight is 11st but can fluctuate up or down by a few pounds). I have regular blood tests to start with but now I have them very three months. I believe that this is to check your white cell count (if it drops low they may stop the drug for a bit then restart' this hasn't happened with me). Personally I'm always prepared to try anything I'm 42, although the Rhuemy did tell me earlier this year that they can't make me well all they can is try to manage my symptoms and stop more TIA's.

    I think it's worth trying but even though I'm on this I've had cyclo and I've had 4 lots of rituximab which is now in my treatment plan as annual maintenance but the neurologist wants me try more cyclo (I do worry about the long term effects of these drugs not azathioprine but then I have to,push that out of my mind and focus on now).

    Ultimately you need to feel comfortable with the meds you take and your nurse/Dr should give you the information needed to help you make

  • Hi, my experience is very like annie330's. I got taken off prednisolone because of the huge weight gain I experienced on steroids. Instead I was offered Azathioprine which I began taking about 3 years ago. Like others have said the main drawback with this drug is that it can affect your white blood cells. This is why they take regular blood tests to check that everything is okay. My experience of Azathioprine has been extremely positive. However, just as no 2 lupus sufferers will display exactly the same symptoms so no two people will have the same experience with the drugs they are given. Having said that our local health authority produces a leaflet detailing the pros and cons of using Azathioprine. Perhaps your doctor could give you something similar. Also, about 12 years ago I had Non Hodgkins Lymphoma - (a cancer). My consultant checked with my cancer doctors before placing me on Azathioprine and they felt the benefits I could derive from the drug outweighed the small risk there was with taking the drug. I have to say that so far I can only agree with them. I now only get blood tests every 3 months and my quality of life has improved hugely thanks to this drug. I'm not trying to influence you one way or another - but I think it could be worthwhile talking to some of the health professionals to see what they advise - and ask them why they think this could benefit you. Anyway, I really hope you find something to give you some comfort and I wish you all the best.

  • Can't you take an increased dose of Plaquenil? It depends on the weight, if you are over 70kgs then you can have 400mg per day. With your 'mild' SLE I would have thought that would be the first step before moving to Aza. You could give it a go for 2 months (giving time for the increased dose to kick in) and then see if you still need Aza. Just a thought, I'm not a doctor.

  • hello everyone,

    thankyou so much in taking the time to answer my question, you all have been a great help. i can now see in it in black and white and not the grey fog i was yesterday and this morning.

    purpletop, i did take 200 plaquenil then 400 plaquenil alternate days last xmas but i had a headache for over a month so was told to go back to 200 daily and headaches stopped within 2 days.

    every blood test i have always has a low w.b.c count and ive been told thats normal for me.

    i 90% sure that i will give this med a go,its got to be better than feeling like death warmed up everyday. a BIG BIG thankyou to you all . take care xx

  • Sorry - I've been away for a couple of days without access to my laptop. I think that TPMT is an enzyme that you need in order to be able to process azathioprine. If you don't have it, or if you do't have enough of it, azathioprine can accumulate in the body and is then very dangerous. The medics divine your TPMT levels with a blood test. It is not something that you can get more of if you don't have it - I asked my consultant this question (yeah - she thinks I'm stupid, but who cares!)

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