Mycophenolate vs Methotrexate

[DaleDiva]

Just been diagnosed with CNS Lupus and the Neuro and Rheumy are debating which medication to use, They are favouring Mycophenolate. Anyone advise me from personal experience?

[Hidden]

Mycophenoloate every time!

I have only been taking it for 6 months but I am slowly getting better- and I already feel better than I have felt for several years, in terms of joint pain, etc.

I don't know about CNS lupus - but I would guess quite a high dose of MTX would be on the cards..... My experience is that it has worse side effects than Mycophenolate but I know that everyone is different. However I have read that in general people do better on Mycophenolate.

Bad luck about the diagnosis. Take care.

[DaleDiva]

Thanks MaggieS. Thats the one they seem to prefer

[Purpletop]

No personal experience of this yet but just to say that at least you now have a diagnosis and can start medicate it. I hope you're starting to feel better soon. Can you share what particular symptoms led to the diagnosis, I'm always mindful of CNS lupus.

[DaleDiva]

I began to get an increase in migraines, my words would come out in the wrong order, I became clumsy and would fall over nothing. I also was dizzy/ light-headed a bit like being in a lift and I twitch, especially my eyebrows and ears! My GP sent me for an MRI as he thought I had either a brain tumour or MS. The scan showed white plaques on my brain so I was refered to a Neurologist. At this time i did have a diagnosis of MCTD but no-one joined the dots until I saw the Neurologist. He did loads of bloods and tests and came up with CNS Lupus. He is now working together with my Rheumy and they are planning a joint plan of treatment for me.

[tiredmum]

my rheumy prefers myco as seems to be better tolerated with less side effects. I have noticed a huge improvement with joint pain since being on it

[cloggy73]

Hi DaleDiva

I too have CNS Lupus and my neuro together with the rheumy suggested myco - it has made a difference. I would highly recommend this form of treatment. I still have relapses but compared to how I was a few years a go there is a change and I am very grateful to my doctors and the NHS. Good luck with your treatment plan and I hope you see an improvement with your health soon.

M