Anyone on azathioprine for mild lupus?.

[Lupusgemini]

Hi all

Basically I am looking for some advice and experiences from those who are both medicated and unmedicated.

I got diagnosed with lupus dec 2023. Following a summer where I must of been experiencing a flare. A lot of skin issues/rashes, mouth/nose sores, hair loss, eye problems, positive ANA and DS-DNA. I have seen my NHS rheumatologist twice since and due to see them again next week.

My last appointment in Sept 2024 he suggested I start a low dose of Azathioprine (immunosuppressant). I was reluctant to start meds as I still feel a bit in denial about it all and I feel because I have a mild case of lupus at the moment. Is there actually a need for immunosuppressants right now?.

Has anyone got a similar story to mine, where they have started taking azathioprine and their symptoms even if mild have calmed down?.

Or those who aren’t medicated. Have you noticed symptoms worsening over time?. Will I be doing more damage to myself in the long run for not taking them.

Since 2023 I’ve also noticed that my periods have become very irregular and short. Which coincides with the lupus diagnosis.

The last few months i have also been experiencing more constipation and stomach cramps. I’m querying whether lupus has anything to do with either of these.

I’d be really grateful to hear your experiences or advice. To help make a decision for when I attend my appointment next week.

Thank you.

[RosieA]

As you will know, all our Lupus journeys are so individual that it can be difficult to extrapolate what might be the right course of action for you. Nevertheless, it is always great to arm yourself with knowledge and ideas prior to seeing your consultant.

I hope my history might help you. I have been under the care of Rheumatology for 5 years and after mainly a diagnosis of UCTD it morphed into Lupus last year. I have been on HYX for most of these 5 years but have struggled to find an immuno suppressant that I could tolerate, so have tried MTX, LEF, AZA and now MM. During these 5 years, without enough control (perhaps a contributor) my symtoms continued to develop until I developed pericarditis and chronic pleurisy. I also get abdominal symptoms but it's really hard to pin point what is going on. Discussions with my consultant confirmed that I might now have some scarring. So, the aim of the game, is to prevent accruing damage- this is crucial and may well be the rationale for why they want you to start on AZA. Vitally, AZA and other such drugs are steroid sparring.

As to AZA, some people do really well on it and others can't tolerate it and no one can predict how you will get on, sadly! I did well on a low dose but as soon as I got to a theraputic dose I started to be sick. You may sail with it. Are you on HYX?

I hope this helps a little. Do let us know the outcome of your meeting if you feel able. x

[Lupusgemini in reply to RosieA]

Thank you for your reply, it has been very helpful.

Yes you’re right, that’s exactly what my consultant said at my last appointment. In that he doesn’t have a crystal ball and he would rather me be on a low dose to prevent things escalating.

No I’m not on HYX. I’m not on any meds at the moment. I can’t take HYX as I suffer with scalp psoriasis and they said it would worsen it. Last year it cleared completely. But it’s flaring up again now and was quite bad back in 2023 when I had that first initial lupus flare. Maybe it’s a sign that all is not well within.

I think I owe it to myself to at least try it. I’m just feeling anxious about having a condition that I may need to medicate for the rest of my life and all the side effects and implications that can come with it. I have a busy active life and I guess I’m feeling a little scared about the possibility of that changing. X

[RosieA in reply to Lupusgemini]

Your concerns are all very familiar. Most of us have had that internal discussion. Remember though, that in the mix, are those whose disease goes into remission or low activity. My understanding that under those conditions the consultants try to get you on the lowest dose possible. It's a shame about the HYX but this maybe why it's more important to give the AZA a go. x

[Spandau]

Hi, I have been on Azathioprine for 6 years and it has really helped me. Initially I didn’t want to take it despite my specialist saying it would help but now I am glad I have. After the first few weeks where I felt quite sick, I now tolerate it really well. It has particularly helped with stomach issues I had - alternatively constipation and diarrhoea and lots of stomach pain. Good luck if you decide to give it a try.