lupus/Sjorgens

[Dressgirl52]

I have a rare lupus , lupus tumidus and Sjorgens - still trying g to get meds right as also suffer from facial paniculitus - consultant changed meds this week to steroid and Hydroxychloroquine - any advice on this last medication ?

[Maverick77]

I have SLE and also take these two meds plus rituximab but I have never found anything that helps sjogrens. I have a cupboard full of sprays and gels to relieve dry mouth but it just seems to get dryer and covered in sores. If you find anything that helps let us know. x

[Dressgirl52 in reply to Maverick77]

thank you /agree they sprays are useless - I use the pastilles- saltivax they are the best for me and sugar free gum x

[Cas70]

Hi - I have discoid lupus and Sjogren’s. Had been on Hydroxy 200mg per day. Just increased to 400 and it has made a lot of difference. Now down to a low 2mg dose of steroid. Met with Sjogren friends earlier this week and we agreed it takes ages to get the right meds. That seems a good combination you are on but we are all different. Stick with hydroxy I have found it to be effective - it takes a while to work. I use Xylimelts at night for dry mouth and suck sugar free sweets when needed. Water with cucumber chopped in it or apples is very good for dry mouth. Good luck

[Dressgirl52 in reply to Cas70]

thanks that’s helpful and good advice 😀

[Biddy47]

Hi there, I have cutaneous lupus and Sjogrens syndrome and take Hydroxychloriquine for both. I have been taking it for 7 years and find that it helps with both conditions. It can take a few months to feel the full benefits of it but stick with it. Good luck.

[Dressgirl52 in reply to Biddy47]

thank you that is encouraging x