azathioprine

[Newlupus76]

I have just been prescribed azathioprone for my lupus sle and aps and I was wondering what side effects anyone got? Does everyone take it suffer hair loss and how much and for how long?

Trying to prepare myself before I start.

Thanks

[Ellenkay55]

Hello Newlupus76. I have been taking Azathioprine for the last 20 years and apart from occasionally feeling slightly nauseous during the first week I have been fine. I have taken doses ranging from 150mg down to 50 mg(my current dose). You do have to be careful to protect your skin from the sun though as if you don’t you could be at risk of getting skin cancer. Hope this is helpful.

[Newlupus76 in reply to Ellenkay55]

Thank you. I’m starting on 50mg then 75mg then 100mg every 4 weeks increasing

[Mya12king]

I have Lupus SLE and have been on azathioprine for over 20 years and felt a little nauseous for first few weeks but not physically sick, and have been absolutely fine.Hope it works for you too.

[Newlupus76 in reply to Mya12king]

Thanks for responding

[Pi1410]

I also have SLE and on azathioprine for 17 months. I started on 150mg and went down to 100mg, my current dose for already over one year. As I was simultaneously started on Hydroxychloroquine and Prednisolone which I am still taking all, makes it very difficult for me to pinpoint which side effects can be attributed to which medication. For 8 months I was also prescribed a stomach protector, but I have to say that since I removed it, I often feel nauseous but without ever being sick. Having said that, I have the feeling that Hydroxy could be the source of the nausea, but it really is a gut feeling without proper evidence… I am refraining from getting back on pantoprazole as it also has its long term side effects, it seems that if I take the medication in the middle of the meal is helpful.

I have periods of heavy hair loss but I think it is mostly attributed to the state of my condition (stress, infections etc) than the medication per se as I see changes in the hair in periods without changes in the medication.

What really concerns me with Azathioprine is the fact that we must avoid sun exposure and have to protect our skin all the time. Now I am a bit more reassured by Ellenkay55 and Mya12king experiences for which long-term intake has not led to skin cancer.

[Newlupus76 in reply to Pi1410]

Thanks for the response. I’m on all those tablets as well. Hydrochloride, prednisone, omeprezele and also aspirin for my APS and since it’s shown I’ve had a stroke.

Did you need time off your work when starting meds? Also is the hair loss thinning hair or bald patches? Thanks

[Pi1410 in reply to Newlupus76]

I was not working when I started my meds; I was hospitalised at that time and was diagnosed with SLE after that. I went back to work almost 2 months after being discharged from hospital, but I started of on a 3-hour working day regime the first month, the number of hours were gradually increased Every tow weeks or so. I am lucky enough to have an employer with a medical service that puts health first; the company doctor made sure that I would not be put under stress in the first months back.

The first days on the medication I had blurred vision and a bit of nausea, the sensitivity to strong artificial light (like in the office or department stores) lasted for a couple of months. I had a number of more impairing side effects for months, which I won’t bother you with, but were all attributed to prednisone.

My hair was always very thin, so I cannot attribute it to the medication. In fact last spring my health was finally striving for a few months - before I had an accident - and my hair got incredibly shiny and strong and yet prednisone was the only medication that had been reduced, the rest remained the same. I think that my hair loss is more spread out across the scalp as I pass my hand and a lot of hair comes off, but it does not concentrate to the point of forming bald patches, except around the forehead where it is visible a concentration of new hair growth.

[Newlupus76 in reply to Pi1410]

Thank you for this detailed response. Think this is the tablet I’m nervous starting. Got pneumonia just now so to wait till fully cleared first.