Hi everyone
Has anyone had problems with being extremely thirsty when on Leflunomide? I have been struggling with this for a while now and although I have T2 diabetes, it’s well controlled. The other day I wondered if it was due to the two DMARDS I’m on and it mentioned Leflunomide. I will mention it when I see the consultant next but it’s not a nice feeling to constantly want a drink. Then of course I’m up 4/5 times a night wanting a wee!!
Kati xxx
Best to get in touch with your GP and make sure your diabetes really is under control. You don’t say how long you’ve been on Lef - if it’s only recently it may be a side effect but again, get it checked when you speak to your doctor.
Everyone is different and we all have unique medical histories so although others may say yes they are thirsty whilst on this drug it’s still going to be a choice as to whether or not you stay on it if indeed it is the culprit. Hope you get sorted soon.
Yes, I mentioned this to the gp on a couple of occasions but it seems to have been forgotten with all the other stuff going on. My kidney function tests have been on the low side but the gp said it’s not of concern. I will speak to the Rheummy nurse if it carries on. I’ve been on Leflunomide since October and it seems to be helping so hope it’s not this that’s causing the thirst. My diabetes result was in December and at 46.
Thanks for the reply 😁
Hi Kati, just wanted to reply as excessive thirst is something I've been struggling with for the past few years, while I've been on baricitinib & sulphasalazine. I've had various investigations through the GP, I'm not diabetic. It's a bit of a mystery, but best guess is I have mild Sjögren's syndrome, an autoimmune disease that can be related to RA. So that might be something else to consider? I hope you can get it sorted. I agree the getting up so many times in the night is really grim.
Hi Katy
Yes, and sometimes I’m thirsty in the night after going to the loo so many times! I’m a bit concerned about it being related to my kidney function being a bit low so I think I will contact the gp again. I just feel a bit guilty for contacting them about this as I have other issues going on too 🙄🙄
Thanks for the reply xxx
I have guilt about contacting the GP as well, but you need to do it, especially if it might be your kidneys.
I noticed your age in your other reply - I am same age and wondered if it might also be partly related to menopause starting, as apparently excessive thirst can be a weird symptom of that too.
It's odd because it's not just dry mouth for me, although that's part of it. Sometimes I can't sleep, then I realise it's because I'm thirsty, so I have some water, fall asleep, then wake up an hour later needing the loo! 😂
Is it actually thirst or is it that your mouth is dry? I found when my eyes and mouth became really dry I started feeling really thirsty, until I realised it was just a dry mouth.
Dear Kati
I have been on Leflunomide for about a year in addition to Sarilumab, a biologic. I have dry mouth and skin and slightly dry eyes. I used to always need to get up in the night but now I don't but then when I get up in the morning I have to wee a lot several times. I have mentioned it to my Rheumy who is not concerned at all and my kidney and liver functions are normal. I take Leflunomide when I go to bed so maybe it makes a big difference in fluid absorption when I've just taken it? I am trying to increase my overall fluid intake but that of course means I pee more!!
GP has also looked at Kidney function and can't find anything wrong. It's a puzzle. Rheumy thought it might be Sjögren's but didn't offer any solution.
Do see your GP if you are worried.
It's good to know we are not alone.
Leflunomide - RA sufferer 
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