Hi all, hope you are all as well as can be. I was told i have lupus this morning, was wondering if anyone else on here has lupus and MS? What are your experiences? thanks, love Bex xxx
I am sorry to hear that you have something else on top of the MS.
Do you mind me asking, how do they come to a diagnosis as there has been talk recently of this in my case
Hi there - rather randomly I logged on to the site today after not being on here for ages and saw your post and thought I should reply. I was diagnosed with ms and lupus and am also having other investigations for my liver and my kidneys. At the moment I am not on any medication for the ms or the lupus as I was taken off them both due to my liver but can answer questions to the best of my ability if you have any. Sle lupus is the type I was diagnosed with although I was diagnosed on repeat symptoms and negative blood tests for the lupus and was diagnosed with rrms. Karina x
Hi again Karina, re you being taken off some drugs due to liver problems.
I recently had a liver test result which was high…had a re-test and it was about normal. I will be having a 3rd test very soon.
It alarmed me and made me think meds I`ve been on for a long time, maybe be causing unwanted side-effects. I spoke to my GP and she agreed for me to wean off some drugs…have weaned off both oxybutynin (got my saliva back at last) and quinine. Nothing bad has happened. Targetting baclofen next. Pollx
Jaycie, i was diagnosed by blood tests. There are types of antibodies that they test for, that show up if you have lupus, but they can show up in people who don’t have lupus, so they take your symptoms into account too. That’s my understanding anyway. They were testing my blood for other reasons though.
Karina, thanks for your reply, I don’t have any specific questions, just want to understand it better xxx
Hi poll - my ms team and neurologist took me off the treatment straight away as my liver tests were more than 10 times over the maximum limit so they were dangerous levels . My liver function tests have been abnormal for about 18 months - so am waiting to see a liver specialist and have a liver biopsy. Hi folksong - well it is a nightmare sometimes having both because it’s hard sometimes to work out which symptoms are coming from which disease! Have they offered you treatment options yet?
Hi Bex, Just wanted to commiserate with you over your dx. I’m sorry to hear about it, you didn’t need anything else, did you? Teresa xx
Aww, thanks Teresa, no I didn’t, but i just gotta get on with things.
Haven’t been offered any treatment yet, was told that I will be sent an appointment in the post for January xxx
I was going to write to you tonight and then noted your post on having lupus.I know loads of people that have it. Its just a double whamy having two things both together. I find it hard to cope with C.M.T. and MS but i tend only to think about the MS. I hope you get the correct suport. I see you will get an appointment in January. I will keep my fingers crossed for you. I wish you all the love in the world and will PM you in the next few days
Thank you for your reply.
Take care xxx
Hope they get you some treatment sorted soon in the new year Bex! Teresa xx