LUPUS UK
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Azathioprine: pro's and cons

Hi everyone,

Hope you're all as well as can be. I was hoping some of you may be able to tell me your experiences taking azathioprine (Imuran) please? My Rhuemy wishes to start me on it but I'm a bit nervous. I only take 400mg of Hydroxchloroquine for my condition at the moment (and steroid injections to control my recent flares) but he feels the inclusion of this drug is necessary. Any advice would be gratefully appreciated. Thanks in advance. :)

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Hi, I also got started on Azathioprine but unfortunately had to stop after 5 weeks as my liver enzyme count went up to 227. Presently I'm still getting weekly blood tests to ensure the level goes down and I've also just had a liver scan. I have heard that a lot of people have greatly benefited from taking Azathioprine but unfortunately I wasn't one of them. You will be closely monitored and weekly bloods taken for the first 6 weeks then fortnightly for 6 weeks and if all is ok you will then be checked monthly. I hope it works out for you

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Thank you for kindly replying, much appreciated. I'm sorry though that azathioprine wasn't good for you and caused you problems! I hope your doctor has something else up his/her sleeve to make you feel better.

Thanks for explaining what happens with 're to blood checks etc. I'm just a bit nervous as I really didn't expect him to start me on an immunosuppressive drug as none of my organs *touch wood* have been affected apart from inflammatory lesion on spinal cord. Anyway, thanks again. Take care.

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You're very welcome, hope you feel better soon

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Hi, I had a really good experience for five months. It gave me my life back. Reduced all my symptoms and improved my quality of life massively. I then got norovirus and every time I took it after that it made me violently sick so had to stop. My docs say this isn't common and if it's going to make you sick, it usually does from the beginning .My advice would be take it at night and have some anti nausea meds handy just in case it makes you feel nauseous. I work in mental health and was often in a clinical environment so I used hand sanitiser a lot to help prevent infection. Good luck with it if you go ahead.xx

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Thank you for your reply and advice! It's greatly appreciated. I'm sorry to hear it was working so well for you, only for it to make you really sick after catching the norovirus. I will be sure to request some anti sickness tablets just to be on the safe side. Thanks again! Take care x

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I took it for years and was ok.

However I was then changed to Myfortic acid which is more effective

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Thanks for the reply. I'm glad to hear it worked well for you for so long. May I ask why you changed to Myfortic Acid? I am still trying to understand and get my head around all these weird lupus drugs! Cheers x

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I was told that it was much more effective at controlling lupus than azanthropine

It’s a much newer drug

It was newer at the time about 10 years ago. I’d just had a flare and they needed to get me back on track quickly

I was living in Scotland at the time and had a very good consultant. They seems to have more money in the NHS there at the time.

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I am in Scotland, so that is very reassuring to hear. Thank you for kindly explaining, I really appreciate that. Hopefully this means that my condition isn't too bad if there are better drugs for lupus out there. Thanks again. Take care x

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Yes in that last flare I lost renal function so I needed a strong drug.

Wish you well take care x

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Thanks Sarah. I'm sorry, it's sounds like you've gone through the mill. I hope you are stable and well at the moment. Wishing you all the best and thanks again for your help. Take care x

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Hello. I was given Azathioprine. Was ok on one tablet for first week then when i upped to 2 tablets all hell broke loose. I was being violently sick. Managed to persevere for another week but got so bad I tore my stomach lining and was bringing up blood.

They removed me from it and had to go back to Hydroxychloroquine.

Still on Hydroxychloroquine as haven’t had guts to try another. Problem you get though is Hydroxy gets to a stage where it just isn’t enough and you end up taking more & more pain killers. It’s vicious circle.

All you can do is try it as will affect people differently.

Good luck xx

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Thank you so much for your reply and I am really sorry to hear you had such an awful experience! It sounds traumatic. I do so hate being sick (although I suppose no one particularly enjoys it!!).

I guess with Lupus drugs we just have to give them a go and hope for the best but I have to admit how nervous I am. Like yourself, I take 400mg Hydroxchloroquine and had a bad flare over the Xmas period which necessitated high dose injections of steroids, so I suspect this is why my Rhuemy wants me on this drug. You are definitely right to say that Hydroxy doesn't quite cut it after a wee while. I hope you are doing as well as can be just now. Thanks again for your reply xx

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Hi I was on azathioprine for 13 years until last August when they changed me to mycophenolate mofetil they changed me as after all the years I was on azathioprine (which worked for me) I came out in warts on my hands which they froze off and have now disappeared thankfully, if I was you I would give it a try. I hope it works for you. Good luck xxx

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Thank you for your kind reply,much appreciated. I'm really glad to hear that azathioprine worked well for you (although sorry it caused warts and it's definitely something I'll keep a beady eye on so thanks for letting me know). It is very reassuring when you hear that for some people this drug has been very effective. I guess I suspected that methotrexate would be the first lupus drug of choice that most Rhuemy try first but this thread has shown me how often azathioprine is used. Thanks again and I hope you're as well as can be. Take care x

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If they do ever suggest methotrexate and you aren't squeamish, my doc says the self administered injections are supposed to have loads less side effects than the tablets. I think that's next on my list!xx

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Thank you so much! I'm so glad I came over to this site for advice. :)

I will *definitely* go for injections if methotrexate is necessary in the future. Thanks for the heads up! Hope it goes well for you if you ever do try it. Take care and wishing you all the very best xxx

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I was on Azathioprine for many years. The only reason it was changed was because I had a kidney transplant and a lot of my medication was changed at that time. I now take Mycophenalate Mofetil.

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Thanks for replying. It's so reassuring to hear positive experiences on this drug. I hope you are as well as can be now. Take care! X

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Hello, I've been on azathioprene since November 2017 along with a slowly tapering dose of prednisolone. So far, I haven't had any negative side effects though my doctor did suggest that it could cause nausea. Thankfully it hasn't. As our friend below mentioned you do get tests fare more often to monitor your lover's reaction to it, but this far my results have been in the normal range. Hope this helps and best of luck to you!

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Thank you very much for your kind reply and it's very reassuring to hear that you've had no problems with azathioprine! :) I'm glad to hear they monitor us more closely whilst taking it too. I'm probably over thinking the whole thing but I am very glad I came on here to ask. Thanks again and I hope it continues to help you. Take care x

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My 14 year old started on these in January last year and stayed on them for 4 months. She had no side affects but felt they didn't help at all. She's also on 300mg of Hydroxychloquin daily and has gone onto Methotrexate which has helped her.

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Hi and thanks for kindly replying. I'm sorry your young daughter has to take these drugs but I'm glad the Methotrexate is helping her. I hope she is doing as well as can be. Take care and all the best x

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I've been on azathioprine for a few years. Have got small, mainly flat, warts on my hands and forehead so reduced the dose last year on advice of rheumy. No new warts appearing now. No other problems.

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Thank you for replying. It's so helpful to hear positive experiences on this drug. I hope the warts don't bother you again. Thanks again. Take care x

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My 16 year old day daughter has now been taking Azathioprine for 16 months after a very negative experience when prescribed Methotrexate. I think this is the opposite to Di-do's childs experience....it just shows that everyone has a very unique reaction to the medications available. This med seems to work well for her, in combination with 5mg prednisolone...with no disabling side effects. We were really apprehensive about her taking ANY medication..but two years into it all can understand the logic of managing this condition aggressively BEFORE the symptoms have a chance to limit you! I have found it really useful to note down in a diary the medications tried, doses and symptoms/side effects....it has really helped us in managing her condition.Hope this helps...I didn't know about warts!...but no sign at the moment, no sickness for her either.

Very Best Wishes from Us XX

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Thank you very much for your kind reply, it's much appreciated. I am sorry your young daughter is also going through such a difficult condition and having to take strong medication such as azathioprine. I do agree with you though, in that treating the condition before it becomes too problematic, certainly makes a lot of sense.

I think having a wee diary for medications is a good idea and one I will implement as I've found it can be difficult to track what symptoms are side affects of the drugs and what are actually symptoms from the condition itself. Thanks for the advice.

Wishing you and your daughter all the very best and I hope she continues to benefit from azathioprine with no issues. Take care x

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I had to come off methotrexate as I was being sick ....started on azathioprine and now 5 years later still no ill effects. I take it with 400mg of plaquenil.

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Fantastic to hear and thanks for your reply. I hope it continues to do the trick for you. Take care x

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Hi I also was in azathioprine and felt pretty good but then my liver enzymes also shot up into 300’s and had to stop it. They came back down once stopped sobconsultant wanted to try it again but it did the same. I was bit gutted as I’d finally started to feel a bit better.

I’m now on mycophenolate, I’ve had to stop it once recently as my immune system dropped too low but am back on it again now.

I’d say yes, to trying the azathioprine it was fine and everyone tolerates these drugs differently and it’s worth a try. I think also azathioprine is one of the more favoured ones they prefer u to be on so it’s worth a try! It could really help u never know x

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Thank you for replying, it's really helpful to hear. I'm sorry your liver was affected by using azathioprine, especially as it seemed to be helping you. I hope the drug your taking now is effective and your immune system doesn't go too low again!

I didn't realise azathioprine was a favoured drug of choice by Rhuemys! I always assumed it was Methotrexate as I heard of other people being on that one but I'm glad you think it's a good idea to go for it. I will give it a go and report back to you all. Thanks again and hope you are as well as can be. Take care x

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Methotrexate is usually given for rheumatoid arthritis as it’s mainly for inflammation. So not usually the drug of choice for lupus unless u have visible swelling of joints.

I think aza is generally most well tolerated which is why they wanted to try me on it again. You will have weekly or 2 weekly bloods so if there are any issues it will be picked up quickly and if it’s the liver it usually just goes back to normal once u stop the drug x

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Thank you for explaining that! I'm still trying to get my head around it all if I'm honest. I nearly freaked last night when I read a comment from a person with Lupus on Twitter in the US stating she was currently receiving chemotherapy for her condition!! I then panicked before it dawned on me that all these types of drugs would technically have been used for that at higher doses. Thanks again for kindly taking the time to explain. Hopefully azathioprine will be well tolerated by me and cause no issues, especially if it's the best of a bad bunch. :) Take care and all the best x

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Oh god I hate it when people say stuff like that!!!! Basically some drugs are used for different conditions and I hate when people over dramatise these things! Don’t panic. People with headaches can be treated with anti epileptic drugs for example but that doesn’t mean that it’s anything to do with epilepsy!

Hope that makes sense!?

Are u newly diagnosed?

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Haha I'm so glad you think so too!! :) I definitely thought it was way over the top!

I am fairly newly diagnosed but if I am honest, I haven't dug too deep into treatments etc as I considered myself very 'mild' in comparison to those who had suffered renal issues etc. I've had joint problems from childhood (blamed my hypermobility) and kind of got on with it until I developed Occipital Neuralgia and it turned things a bit upside down. We eventually got to the bottom of why I was having these types of headaches etc and why I had the malar rash (which I blamed on roscea) and other rashes and problems that I had dismissed for a long time. Anyway, long story short I've been on Hydroxchloroquine for just over a year now and steroids in between, so hopefully azathioprine will be the ideal drug to get me back into shape again! ;) Thanks again for your kind help, I genuinely appreciate the fact that so many people have offered their assistance with this question. It's really helpful. Hope you are doing as well as can be. All the very best Sara and take care xx

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Oh I know how that feels!!!! I have Occipital neuralgia too and a few yrs back had to have nerve block injections into the occipital nerves ouch!!

I’m currently sat here with a horrific headache!

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Seriously?! You suffer from ON too? Jeez. I had no idea it was common among people with Lupus. If you don't mind me asking, how did you get diagnosed? Was it caused by the lupus going for your CNS?

God as for bloody nerve blocks, I had one just last Wednesday as it happens and I twisted my neck earlier today and I swear my head now feels like I've pulled a muscle in it and it's zap zap zapping away as you'll know all too well. 😕 Those nerve blocks are a hit and miss but it was working fine up until I gave myself an injury. Numpty!

So sorry you are suffering tonight too 😔 Its the pits. For me, ON is the worst because it's the one that causes the worst type of pain as it stands. Everything else I can manage but head pain like that is just rotten. Sending you a big hug. I hope you have a wee ice pack at the ready and some biofreeze for your neck. I find that helps a wee bit. Xxx

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What diagnosed with lupus or ON??

I have lupus and antiphospholipid syndrome all diagnosed after starting with joint pain aged 21. Now 38. Originally thought to be RA but over yrs of test found to be lupus and aps.

I take 22 tablets a day inc steroids and slow release morphine for the pain.

Fun fun fun! X

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Oh Sara, you wee soul. That's bloody awful for you. 😔 I really hope you have some comforts, ie. hot water bottle, blanket, chocolate, a book or whatever is your pleasure. It's hard to focus when you're in so much pain but I find my comforts invaluable (and my 30 year old arse isn't too proud to admit my cat gets cuddled senseless for furry therapy!).

I was wondering when your ON developed and if it was as a direct result of the lupus attacking your CNS? That seems to be the general theory my neurologist and rhuemy are going with at the moment. I have inflammatory lesions on the c2 spinal cord so we think that's what's been setting off the ON.

X

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I think I was diagnosed ON before the lupus. They ? Fibromyalgia and that’s when they found the ON as far as I recall.

It’s very hard I have 2 small children too very demanding and I get so exhausted. Most nights I’m in bed before my 2 yr old! Luckily Dad is so good and sorts her out I’m dead! X

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Sorry for the late reply Sara, time got away from me last night!

I can only imagine how exhausted you must feel with two little ones to look after, although I'm glad to hear that Dad is such a good help to you. :) I don't have children of my own, it's furry kids for me but I do have a host of friends children who regularly stay over and can testify that it shatters me so God knows how you feel!!

As for having Fibromyalgia, my cousin has that condition and I know it is very painful. I'm sorry to hear you suffer from it, although from my reading, I gather that it's quite common to have it when you suffer from lupus right?

I really hope you don't have a sore head tonight and that you feel as good as possible tomorrow. Take care and thanks again for all your help. Xxx

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Hi I'm on 150mg of azathioprine and 200mg Hydroxychloquin as well as 7.5mg of prednisolone and have been for the passed 6years. No side effects and I have my life back. I would say give it a try everyone is different. The only downside I had was for the first 3 months I was very very sleepy. In fact my kids started to call me the 🐈 because all I did was sleep. Good luck hope it works for you x

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Thank you for you reply, it's much appreciated and I'm pleased to hear that your experiences have been positive and that you're doing so well on this drug! :) I'll give it a wee go and hope for the best. Take care and the best x

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Hi I also started on azathioprine in 2017 and frankly was terrified. However, mostly so far so good and I've tapered to 5mg of Prednisolone which I hadn't been able to do successfully since starting that 2 1/2 years ago. The main problem (don't know if linked) is small chips to my teeth and a dry mouth. So now I'm brushing teeth three times a day, plus interdental brushes and make sure I drink loads of water in evening and a pint of water overnight to ensure my mouth isn't dry overnight. I only had fortnightly (not weekly) blood tests for about three months then down to monthly. Like others say, it's difficult because we all react differently, but be in charge it is your decision about treatment options not the dr. Only you know what is important to you and that's an important part of the clinical decision. Good luck.

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Thank you so much for your reply. It's so helpful to hear positive experiences but also to know that I'm not alone in worrying myself over taking these sorts of drugs (especially as I thought they were only used if the condition had attacked organs... which thankfully mine hasn't so far). You're absolutely right: it is important to be in charge of our treatment but I think sometimes you just feel a bit overwhelmed when the doctors suggest things like it's a blaise decision, if you understand what I mean? 😕

I'm sorry you also suffer from dry mouth as I can testify it's absolutely rotten. I hope it settles down for you. Thanks again for your help and I wish you all the best. Take care x

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That medcine gave me ringing of the ears I still have it plaquenil i took for years don't take to long doctors took me off.for my lupus I take only heart medcine,calcium,and dapsone feel great the medcine I am talking about the one starts with the azathioprine buy lipo flavonold plus for ring of ears.etnestine los angeles,ca

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Thank you for your kind reply and I'm sorry to hear you had such a difficult experience whilst taking azathioprine. I'm glad you are feeling better without it. I'll be sure to keep an eye out for ringing ears as a potential side affect. Thanks again. Take care and all the very best x

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Hi

Everyone is different and so will tolerate medications differently. I'm on azathiaprine 50 mg a day and have been for 28 years (kidney transplant). There are risks with every mefication but as long as you're monitored and you listen to your body i'd say give it a try x

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Thank you for your helpful reply, it's much appreciated, especially hearing from someone who has been taking the drug for such a lengthy time period. May I just ask: does infections/viruses impact you more severely as a result of your medication or do you feel they affect you in the same way as anybody else? Thanks again. I really appreciate you taking the time to reply. Take care and the best x

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I honestly believe that although it does come with risks, I've greatly benefited from this drug. I experienced renal failure aged 15 and no cause was found. I began taking azathiaprine to prevent rejection. 25 years later lupus/aps was diagnosed. (Aparently the azathiaprine I was taking for transplant was treating my undiagnosed lupus) I managed to work full time and have a near normal life, though exhausting! I am a firm believer of taking pro active measures to protect my health and so far I've been very lucky. I wash my hands at regular intervals, have yearly smear tests and use a high factor suncream. I don't believe I've suffered an increased amount of infections due to this drug, though it is a risk that needs to be addressed. I hope this helps you. Take care and all the best x

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Thanks for replying Bella, it's very reassuring to know how well you have tolerated this drug. Remarkable really that it was keeping your (at the time) undiagnosed lupus at bay!

I'm like you, it's important to actively help ones health as much as possible! I love swimming and haven't had the energy for it much recently after everything else has been done, so I'm hoping this will give me the boost to get back into the pool a few times a week. :)

With 're to high factor sun screen, it was a holiday abroad which kicked off the flare that led to a diagnosis! I've never tolerated the sun well so I should have been more careful but now I know why!!

Thank you again for your help. Wishing you all the best and take care. Xx

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hello, I had chronic problems of intestines. With colonoscopy it was determined I had sores in ‘ileitis’. I was given 50mg for the first weeks, and it should be elevated till 150mg after 3 weeks. But with 50mg, every day in first week I’ve got sicker. Finally I could reach my specialist again after 8 days, and he said to stop 12 days, and try Imuran again to be sure this illness was caused by the Imuran. Then when I took again the first tablet (50mg), 3 hours later I had a serious allergic reaction, called ‘anaphylaxis’. I could walk anymore for 1 day cause of very painful knees ; in the first hour after I was very trembling, and I had to vomit, and going to the toilet at same time. Then, 3 days I had to walk with a walking stick, and 1,5 month my intestines were like ‘burning inside’. I had extra problems with my intestines for at least 4 months. So, I never may take Azathioprine. A next intake can cause a deadly allergic reaction. But of course, everyone will react different on Azathioprine. Just be prepared, what you have to do when your body don’t accept it. I hope the Azathioprine will do good job for you, because I read here that many patients react well on it.

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Thank you for kindly taking the time to reply and I am so sorry to hear that you had such a severe reaction to azathioprine! That sounds truly awful for you. I hope you are feeling a lot better now. Thank you for letting me know the potential side effects caused by this drug as I really wanted to hear a fair and balanced review. Take care and wishing you all the very best x

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Hi

Wish Aza worked for me. I had no side effects with Aza - bliss. But it did not work for me. I now take MTX and am able to minimize the side effects with a few tricks. I have a cousin with Lupus and she has been taking Aza for about 12 years now. Again no side effects and it work for her.

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Thanks for kindly replying. I'm sorry azathioprine didn't help you but thank you for letting me know that it did help your cousin. I'm glad MTX is giving you relief. Wishing you all the best,take care x

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I have been on Azathioprin for 25 years and have had no side effects at all I have my frequent blood tests and never many problems.Of course we all react differently.Good Luck.

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Thank you so much for your reply, it is immensely reassuring to hear positive stories of those who have tolerated this drug well. I am glad it's working well for you and long may it continue. Wishing you all the best, take care and thanks again x

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I take plaquenil, azathioprine 2x a day AND methotrexate have for yearsno side effects,no problems, im hoping to lawer some as i got shingles recently again ,had them 5 yrs ago too, too much immune suppressants i think. But yur not on methotrexate so yea itll be fine. I take 2@ 50mg 1 in a.m. and 1 in p.m.

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Thank you very much for kindly replying and for offering advice, it's much appreciated. I'm very pleased to hear you have had no real issues with azathioprine and I'm really glad I came to this site and asked the question. Feeling much more confident in going forward with this now. Thanks again and take care. X

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Soft hugs..... benlysta im scared to try yeeek.

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