Hello great people, is anyone else taking Azathioprine and could you let me know your experience with using this drug for Lupus/CTD/Sjögren/Raynards ? Has it helped you or has it caused more issues.
My Rheumatologist wants me to start this in the coming months once up to date with all my inoculations.
Like most people I get anxiety starting new meds and fear the worst always.
Thank you
Hi.yes I have and it didn't work for me.after 7 weeks I startrd being sick and i had developed drug induced hepatitis .I had to wait for my liver to recover before switching to mycophenolate . Its trial and error until they find the drug that works for you .Good luck
hello spanielmadlady thank you for replying how are you getting on with mycophenolate?
Thank you
Apart from initial side effects I've had no problems as such with it. I did suffer nausea when it was increased from 2gms a day to 3 gms which was resolved by spacing the doses throughout the day .I been taking it for 3 years now with blood tests every month
I was prescribed azathioprine for SLE about 15 years ago. The only issues I experienced with it was very low white cell count on higher doses so have always had to tick along on a lower dose. Anyway the last three years I have been gradually weaning off it and as of one month ago I now no longer take it 🙂. So obviously now hope that my SLE will stay controlled on just HCQ alone🤞
You can only try it and see. You'll have regular and frequent blood tests whilst you take it so any toxicity should be picked up. If I remember correctly I had blood tests every fortnight when I first started it gradually reducing that to every 8 weeks (and even every 12 weeks as a result of the pandemic).
thank you for the information and advice.
I have sjorns I take eye drops & gel for eyes. Salive spray for mouth. Not taking anything else yet.........like you do not like trying new meds 😒 d
Morning. I take Azathioprine. I have five autoimmune diseases including Lupus and Raynaurds. I also receive Rituxumab infusions. Both have helped me immensely. I would not want to come off them now as they are greatly improving my quality of life. My consultant is now weaning me off the Prednisolone.
I had really bad allergic reaction to Mycophenolate, methotrexate and Hydroxychlorquine. Just goes to show how different we all are.
Definitely give it a go. The consultant will monitor you closely with blood tests and if they have any concerns they will change tack.
Best of luck. 🌻
I was given azathioprine but it was not for me. I had started to have nausea almost straight away and so came off it.
It really is trial and error as what suits one won’t suit another. If your symptoms are bad then it is worth trying as when it works it does change lives.
Hi. I ve been on it for 10 years and it has given me my life back tbh. I stopped taking it for a year as I had continuous uti problems and other issues which my consultant wanted to check weren’t being caused by the azathioprine. They weren’t and I was so unwell whilst off it the relief of restarting the medication was immense. I had fortnightly blood tests for a couple of years. Then monthly and for the last few years 3 monthly. I am well monitored. I also take hydroxichlorquine and it keeps me able to function.
It’s definitely worth a try and it takes awhile to get into your system so bear that in mind when you start taking it. The results won’t be immediate potentially. Hope it goes well. Let us know what you decide and how it goes. X
I think the important thing before you take this drug is that you have a test for an enzyme called TPMT.
If you don’t have enough of this enzyme, then the drug can be very toxic and dangerous. If you have had that test and your doctor says it is okay then maybe you need to try and see if it works for you.
I was told my TPMT was marginal, and within a few days of starting it had a very sore mouth full of ulcers. I now take MMF which is brilliant for me.
Good luck with it, if you give it a go.
I started Azathioprine in June this year and have had no problems. I take this alongside Prednisolone and hydroxychloroquine plus other medication. The beginning of this year I had major health issues and was in hospital twice and at that time Rheumatologist stopped my methotrexate dose. With a short break in between I then commenced, anxiously like you, Azathioprine but it’s been fine. My TPMT was fine and regular blood tests have shown no ‘out of my normal’ issues. Good luck
Hi I have Lupus and Raynards and was on Azathioprine 40 years ago along with Prednisolone. Was on it for many years with no problems. but then suddenly had very low white cell count and they took me off onto Hydroxychloroquine. Had a severe flare a couple of years ago and they put me back on Azathioprine, and as others have said initially had weekly bloods and then gradually worked up to 3 monthly bloods and all had been ok so far. What I would say is my Raynauds has been greatly improved. I was having to wear 3 pairs of socks etc all year round and my fingers and toes still really suffered. This year only just gone up to 2 pairs of socks, still get very cold hands and feet but no blueness as yet. I would say try it, only by doing this will you know whether it will work for you, and you are monitored closely. Best of luck 😊🙏
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