Hi everyone. I hope you're all having a good day today. I would like to know if anyone has taken or are at present taking Azathioprine to treat lupus ?
I have been on steroids for many many years and my new rheumalogist has heavily suggested this treatment for me to start as soon as possible. I'm expected to start the treatment in the next few days and I'm really anxious to the point of tears. I am to take 1 pill a day for a week, then 2 a day for a week, then 3 a day which would put me on 150mg a day.
My rheumalogist recommends I remain on 10mg of prednisolone steroids daily at the same time. I just think it's all too much.
Recently I had 2 hospital stays due to infections. After the second stay, my hair started falling out. I had been on alot of antibiotics prior and during my stay, plus high dosages of steroids after my discharged also. I'm managing my hair fall the best way I can using good products, supplements, healthy eating and exercise. I use wigs and hairpieces to protect my hair while remaining positive. However I was told that one of the side effects of Azathioprine is hair loss (among other worrying effects) and I feel devastated.
I'd really like to how Azathioprine has effected you positively or negatively, so please if anyone can tell me about their experience with Azathioprine I'd appreciate it very much.
Thank-you in advance.
Blessings.
The dancer xx
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Thedancer5253
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Hi. Like you I'm stetoid dependent (for 10yrs) I took azathioprine in 2018 but it didn't work for me. After 7 weeks I developed drug induced hepatitis and had to stop it and wait 3 months for my liver to recover. I then started mmf which I'm still taking. These drugs take at 3 months to work so you continue taking the steroids for a period of time before tapering very slowly. Unfortunately the mmf hasnt succeeded and im still on 10mgs of steroids . I've just started tacrolimus in another attempt to reduce the steroid burden. My consultant has told me I may never come off steroids as its possible I have adrenal insufficiency but if I can get down to 5mgs it's better than 10mgs.It works very well for some people there is no way of knowing how you will react so all you can do is try .
Thank-you so much for your reply. It really sounds like you had a terrible time with it and I'm very sorry. That's what I really fear, aggressive side effects. I know we have to try different medications to see what works, but I have had a bad feeling about Azathioprine ever since it was mentioned to me. I just don't know enough about it or know anyone using it.
The lupus I have effects my joints and though I was hospitalised twice this year for unknown infections, my joints were not affected at all. I've not had a flare up for at least 6 months, my blood results are good. I've started a regular exercise regime and a healthier diet and I make sure to take supplements and sleep enough. I am feeling so incredibly well and I'm afraid this is going to set me back before forward ( IF it will work for me at all)
I think I need to discuss again before making my decision, I feel pressured to take this drug by my rheumalogist to be honest, but I don't know what alternative I have at this point.
My lupus affects my lungs and I have Lupus nephritis. I don't think drug induced hepatitis is a common side effect. I did suffer some of the more common side effects like headaches nausea etc. Steroids are brilliant but dangerous drugs and far from ideal even though steroids are the only drug that keeps my lungs stable .There are other options like myclophenolate , Methotrexate etc It is good that you are feeling well but don't be lulled into a false sense of security. Lupus can damage internal organs without your knowledge and treatment is also about protecting organs for the future . X
It is always a worry when we start new drugs and none (including steroids) are without side effects. I think Rheumatologists are increasing wanting to get patients off steroids or to as low a dose as possible as they realise the long term damage that they cause.
I am on Azathioprine - I started 2 months ago, I am now on 50mg and recognise that I might have to go higher if necessary. I am on 400mg of Hydroxychloroquine (100mg above the recommendation per Kg - so hope I can reduce that eventually).
My white blood count has dropped to 2.8 but the specialist nurses are keeping an eye out. Otherwise I honestly haven't had any side effects and have started to feel somewhat better. I have pericarditis and possible pleurisy as a result of Lupus.
My recommendation would be to try it. You will be carefully monitored, if you get side effects then you move to the next medication but at least you tried it. This is my third dMARD. It would be good to reduce your steroids in the long run, remembering that they want to maintain you at your current dose until the AZA kicks in then they will no doubt taper them slowly down. There is some good information on AZA on Versus Arthritis, which my Rheumatologist directed me too. Hope that helps a little. x
aw sorry to hear you’re worried I do understand, I was the same. I have been on azathioprine 150mg daily (3x50) for 4 n half years now, no hair loss associated. I mean my hair comes out when brushing but no bald spots and I wouldn’t say it was particularly worse since starting aza. No real other awful side effects, possibly a couple of skin lumps which it can cause. I take it alongside hydroxy, 2.5 pred n aspirin. I did stop aza recently to try MMF unsuccessfully so back on aza.
I will say when I started aza I was very poorly within a couple days with chest pain back pain fever - it could’ve been an infection, n I had t stop n start again. Each time I started I would get pain n not feel good at all so I would stop wait few days n try again. I persevered n eventually felt fine when taking it, I persisted as I knew I needed it to protect my kidneys. All my blood work has remained ok and the lupus activity (antibodies such as DSDNA) have remarkably reduced on this combo on meds. Sending u luck with it!
I have been on azathioprine for around 14 years now. 50mg twice a day. This currently alongside hydroxychloroquine and 5mg steroid period day. I had the same fears you express about taking this drug but I can honestly say over all the years I haven't noticed anything negative as a result of taking it. Hopefully you will be monitored closely. Take care
I've recently come off azathioprine (75mg twice a day) after 3-6 months as it did nothing for my symptoms, although did help my kidneys and liver inflammation which went back to normal on bloods. I had no side effects at all (hair loss as described by Tinkabell555 which could be SLE or azathioprine related or general life stress), but had no change in joints, fatigue, skin or other symptoms.
It's unsettling to try new meds, especially as the list of side effects sounds bad.
As Spanielmadlady and RosieA say, steroids although keep things stable and make us all feel relief from our symptoms, they are not without their own risks,especially in the longterm.
I was on Azathioprine for 16 years with absolutely no problems, that much so i thought i didn’t have lupus anymore, i was on 100mg. , after a high stress situation i had a lupus flare and like you was put up to 150mg with added prednisolone. Every time i reduced the steroids i had more lupus flares. My rheumatologist suggested i change to Mycophenolats Mofiitil, which i have been on for 4 weeks. Fingers crossed for you that the Azathioprine works you will need regular blood tests while your body adjusts. Stay strong x
I was taking Azathioprine after my diagnosis in 1998., aged 45. I took it for ten years and the only side effect was hair loss when I first started taking it but not everyone has the same .This made my hair thin and whispy, falling out gradually (I had very thick curly hair) so I had it cropped very very short for about six months. Once my body got used to Azathioprine my hair grew back even thicker than before and in such good condition. Hair loss was a small price to pay as I was so ill that I wasn't expected to live ,and Azathioprine , Hydroxichloroquine and steroids worked for me.
In 2016 a scan revealed that Hydroxychloroquine had caused toxic( bullseye) retinopathy and my sight was damaged so it was stopped immediately, although it stays in your system for up to five years so I was closely monitored.
I am now 71 and still taking steroids although only 3mg daily. I live with the joint pain and hearing loss ( Lupus took that at the start) and sight damage but life is good and I am relatively well. Good luck with your medication journey and I hope you find the answers you are looking for.
Hi sandiemac, I really appreciate you sharing your experience. It's very encouraging to hear that your hair grew back healthier than before as that's one of my main concerns at this point as I'm experiencing hair thinning now. During my second hospital stay this year, I was taken off hydroxychloroquine, I'm not sure why but I'm going to ask when at my appointment next week. Thanks for your positivity and I pray all continues to go well . ❤️
Hi Thedancer5253, sorry to read that you're going through a horrible time.
I just wanted to share my personal and short experience of Azothioprine.
After my Lupus got worse, I was put on this but I just could't tolerate it as ir gave me severe nausea. I was asked to continue it as sometimes patients get used to it, but for me that wasn't the case. So instead, I was put on Mycophenolate, which I'm able to tolerate.
But I do know there are so many others who are absolutely fine with it, and I hope you are too 😀
Thank you so much for sharing your personal experience. My experience wasn't so good with mycophenolate some years ago, I'm happy to hear you are doing well with it. ❤️
HiCan only say from my experience, have been on azathioprine for 18 years, 150 mg to start now 100. Hydroxychloriquin, for 30 years and steroids between 1mg or 5mg if necessary.
Reason for azathioprine was pericarditis and lung problems. I have had no problems with it apart from an easily upset irritable bowel but that could be any cause.
Hope you settle on it well, it certainly seems to work for me ❤️
I have been taking Azathioprine for 4-5 years now as my treatment for Lupus related symptoms and it works fine for me. I to would have had the combination of steroids and Azathioprine and the dosage has increased or decreased depending on my situation at the time. You may think its alot now but honestly its better for you and your body to adapt to less invasive treatments than to overload your already compromised body with harsher long term treatments. I can't say or even remember if I've ever experienced any terrifying side effects since I was introduced to it years ago. But as of right now it works fine. I'm currently taking 50mg a day and that was decreased from 100mg a day in July of this year. If I can say 1 thing about this treatment it would be do as much research as possible before you commit especially if you are taking other medications that may have a harmful drug interaction with this. I say this because I was prescribed Allopurinol in March of this year to treat my Gout while taking 100mg Azathioprine and unknowing to me or my physician that this combination cause me to settle in a severe case of chemical induced anemia. To the point that in May my HGB level fell to 4.5 and i immediately had to be transfused 3 units. At that time i was being treated for a lupus flare and remained on these 2 drugs among several iron and b12 supplements to resolve my "flare" and vitamin deficiency. Long and short I discovered 1 months later after an emergency room visit that my HGB level dropped again this time 5.4 and had to be transfused another 3 units. And it was then that the Rheumatologist assigned to my case shared an article published about the effects of the combination of these 2 drugs and immediately took me off of the Allopurinol. Took a while to get that out of my system but I'm on the mend. My Azathioprine dosage is now 50 mg a day and although i still experience joint and muscle discomfort I'm managing.
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