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Discussion Starter #1
Hello
I am new to the site and would like some advice if anyone can help. I have been diagnosed with Lupus for the 9 years and have since been diagnosed with Fibromyalgia and osteoporosis. After many years of unsuccessful tablet trials and being passed from one Dr to another i have recently been prescribed Azathioprine 50mg a day. My GP has said that he wont prescribe it as he is not licensed and the hospital didnt really explain what the risks were. Can anyone advise me on what this drug will do for me? or what to expect. MY GP says its 'chemotherapy' and that scared the life out of me!
Thank you
Diane
 

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Hello and welcome :)

Azathioprine is a steroid sparing drug. Many many of us are on it and have found it to be very beneficial. 50 mg is a very low dose (I'm on 150mg - that's worked out on weight apparently - and no, I am not that big!). It has far less side effects than somebody being put on prednisolone long-term or than having out of control disease activity.

Some people can get a little nauseaous in the beginning with aza so it is always recommended to start on a small dose and gradually build it up though, in your case, the dose is very small anyway. It usually takes about a month to six weeks to notice any difference in how you feel.

It is an immunosuppressant drug rather than chemotherapy. What it does is to slightly dampen immune system activity and therefore, hopefully, dampen lupus activity.

You need to remember that most GP's know very little about lupus and it seems yours is one of those. Having a good GP behind you is essential and even if he's not 100% sure about some things he should be willing to accept that and ring the rheumy rather than scare the patient.

Are you seeing the specialist (rheumy?) again soon? Maybe he has put you on 50mg to see how you react and evaluate at your next appointment.

I'm sorry if my post seems rather short and "blunt" but it's half one in the morning here and I really shouldn't be trying to type in the dark with a splitting headache :lol:

hugs to you :hug:
Katharine
 

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Hi Maudy and :welcome:

Azathioprine is mistakenly referred to by some doctors as Chemotherapy, but it's actually an Immunosuppressant. It's original use is for kidney transplant patients to stop them rejecting the transplant. It has been used extensively to treat Lupus though and is very effective, many of us are on it. It's mainly used for organ involvement in Lupus but has also proven to be very beneficial in those who don't get enough benefit from Plaquenil (it's added to Plaquenil therapy and we take both).

You don't say what your individual circumstances are so it's difficult to pass comment. Are you on Plaquenil already and has it had time to take effect? Do you have any organ involvement? These are both questions that need thought before considering starting something like Imuran.

50mg is a low dose of Azathioprine by the way. Many of us take 3 times that, but it's a normal starting dose. It can alter red and white cell counts and full blood counts and liver function tests are done monthly at first to make sure this is not happening. Many people have no trouble with that, myself included.

With any drug the manufacturers have to list every possible or remote side effect, so please remember that when you look at information on Aza. It has a very slight chance of raising the odds of Lymphoma in patients and it can make it a little more likely to develop skin cancers. But from all the patients here and our collective doctors experiences with thousands of patients that is indeed not a very common occurence. With any drug the benefits are weighed against the risks. That's why establishing what you are currently taking or have tried in the past can have a bearing on your own particular situation.

Hope this helps, if we can help you further don't hesitate to ask.

love
Lily
 

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Welcome to the forum Maudy ! :)

I have been taking azathioprine/Imuran 75mgs - 50mgs a day for about 9 years and I think it helps. I also take chloroquine which is a stronger version of Plaquenil, along with another anti malarial called Mepacrine in the UK( US Quinacrine) which brought a 90% improvement to my 'mild' lupus symptoms. I have no organ involvement. These days multitherapy is common because that way you can get the advanatges of drugs with lower risk of side effects.
Your GP sounds like an ignorant B. . I have never heard of a GP refusing Imuran because it is " not licensed" and that's in about 10 years online lupus support activities and reading tens maybe 100's of thousands of posts. It is best described as a disease modifying, steroid sparing drug than scary 'chemo'.

Try to get somebody a bit more caring and clued up. Maybe your rheumy would prescribe it, but it is usually the GP who orders the tests and keeps a general eye on your wellbeing.

Start very very slow - my doc recommended 25mgs every other day for a week then 25mgs everyday for a week, increasing like that 25mgs to the prescribed dose.

Best of Luck

Clare
 

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Discussion Starter #5
Thank you all for the help and advice. I must explain myself properly!
I have been treated for the past nine years with prednisolone 20mg per day mainly to treat the oral ulcers, its worked a treat but unfortunately has landed me with osteoporosis in my lower spine. I have also got Fibromyalgia - i have tried various anti depressants over the years but i have always ended up much like a Zombie! So ive persevered with painkillers. As for the Lupus, i was prescribed Plaquenil on diagnosis but this has never worked for me in any way, so its always been left to steroids and strong painkillers. 15 months ago we moved to a diff part of the country so taht i could be treated at a hospital who were treating before i was diagnosed wiht Lupus, i have under rheumatology with various queries for 11 years after suffering joint pains and ulceration.
4 weeks ago i had an appointment and was prescribed the AZA 50mg to start, hubby pointed out that this will be doubled on my next visit (this thurs) something which had escaped my mind! The hospital didnt really explain what benefits it would offer or long term effects and as my current prescription ran out before my next hosp visit i naturally asked my GP to add it to my list of repeat meds' and it was at this point he said he knew nothing about AZA and would not prescribe until the Hospital had stabilized me, adding that its chemotherapy! I was quite shocked at the time as i thought it a strong word to use but figured that he obviously knows what he is on about - now im not so sure!
Generally i suffer mouth ulcers, stomach ulcer, hair loss and all the usual aches and pains, my organs seem to be okay at the mo thank goodness but i struggle to get around and need quite alot of help. The osteoporosis is quite debilatating and causes more pain than i can handle at times - i'm just grateful to have a wonderful supportive family behind me - i am so lucky. I dont know what thurs (hosp) will bring - i'm having fortnightly bloods tests at the moment also.
Thanks again for your time :)
Diane
 

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Hi Diane,

Thanks for the extra info. I would definitely mention to the treating doctor at the hospital about your GP refusing to renew the prescription :mad: Where I come from a GP has no right to go over a specialists head like that, they don't have the knowledge to second guess a specialist (I think by now you realise that's the case with your GP).

I am wondering how you ran out? Aza comes in packets of 100 here (which would be enough to last you 3 months on a 50mg dosage) , is it different over there?

I also think it's the specialists job to answer any questions you have on the Aza, it's your body and you need to be at ease taking it and be involved in the decision making process. Don't be afraid to talk about this with your specialist and also mention the comments your GP made and how they alarmed you.

All that being said, given that you saw no benefit from Plaquenil then it's probably a good drug for you regardless of your not having organ involvement.

Some people have great benefit from Plaquenil plus another anti-malarial called Quinicrine (Mepacrine) and a few here are on that combo. It requires a prescription and must be made up at a compounding pharmacy so it's even worth mentioning that and see what they say. Some docs don't consider that combo because Mepacrine is not as readily available as some other meds, but it's one worth exploring.

I guess you gave the Plaquenil a fair trial? It does take anywhere from 3 - 9 months to have full effect and sometimes steroids are needed until it kicks in but at a 400mg dosage it is all some Lupies need to control their symptoms, especially the ones you describe.

Obviously you can't take NSAIDS with your stomach ulcer which is a shame :( Are you on any other pain relieving meds, many of us are and they do help give us a better quality of life.

I'm really saddened to hear about your osteoporosis (((((((Diane))))))) I see my Aunt suffer so badly but then she is in her 80's. It's not something we expect to see in a younger person but unfortunately one of the very big downsides to Pred use :(

Good luck at the hospital and do let us know how you get along, don't be afraid to speak up, these days it's much more acceptable to ask questions of a doctor and want to understand more about our illness. In fact most doctors respect that, it's a sign of a patient taking charge of their health.

take care,

love
Lily
 

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Dear Diane,
Personally I am on Methotrexate, mepacrine and steroids. The metho causes few problems. Sometimes Docs. who really don't know much make scary remarks about what I take but I have been on them for a long time now and as other people have said to you "multi-therapy" can be a very good approach.

My GP issues prescriptions, but always with a note to say that they are supervised by the Consultant. The GP also arranges my regular blood tests, but is very strict that if I expect him to monitor them I will have them regularly and always ring for the results. No big deal! Keeps everyone happy.
I have a friend on Aza who does very well,she takes a fairly high dose and is only a tiny girl. She manages a job, travel and motherhood apart from when she has a very bad spell. I would say 95% of the time she is very well.
Hope this helps.
How is your Husband taking this?
x Lola
 
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