CNS Lupus symptoms

[DaleDiva]

It is 18 months since diagnosis and I am now on 3g Mycophenalate and 10mg Prednisolone. Whilst the Lupus type symptoms are showing signs of retreat the CNS ones aren't and I still have tremors, twitches, speech issues and poor concentration. Any one any experience of how long it takes or even if they will go?

[Purpletop]

The symptoms should have resolved by now. What does your rheumatologist say? I just had my mycophenolate swapped to cyclosporine because although it had addressed the symptoms I had when I started myco, lupus decided to go in a different direction, so now I'm taking a drug more geared to deal with that.

That's why we are talking about treatment plans - it doesn't need to be fixed and can be adjusted to deal with whatever lupus throws at us. It is a plan, made to be changed. I'd speak to your rheumatologist about adjusting your meds, I think it is time.

[daisyd]

Have you been tested for Hughes syndrome? Warfarin and placquinil has improved some of my symptoms

[DaleDiva]

Thanx ladies, am seeing neurologist next month so will address it then

[daisyd]

A lot of neurologists have a problem with diagnosing Hughes syndrome a lot of us found this, please look at the Hughes syndrome web site on here.

[DaleDiva in reply to daisyd]

daisyd Thank you for being so persistent as I went to the Hughes Syndrome web page and had a light bulb moment! That's me! Will ask GP for testing. Thank you x

[daisyd]

That's really good take some of the literature from the Hughes foundation site you should also be able to copy one of the articles which Mary writes about from professor Hughes. Although Drs are more aware of this syndrome now you might need an article to back it up.

Glad to help hope you get a diagnosis that you need, I wish I had known years ago

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