Hello all - new to the group, and joined at the suggestion of one of my treatment friends - someone who gets IVIG the same time I do.

I have a rather aggressive case of lupus (SLE) and a moderately active case of MS. (Technically, I should probably disclose I also have Sjogren's Syndrome and fibro. Usually, though, I think it's more than plenty to tell people I have MS and lupus.)

Anyway, Copaxone didn't do much for my MS, so I've been on IVIG since Feb. '09, and that kept the MS under control, until a long-lasting exacerbation that began mid-January.

After a course of plasmapheresis in March (a longer course in November worked wonders for my lupus), my neuro decided I needed to add a mainline MS drug into the mix.

I started Betaseron later that month, but was yanked off of it last week (one shot away from finally reaching 1 ml!!), because it's the likely culprit behind a lupus flare that began recently.

Has anyone else had this reaction? I know they tell you you may feel flu-like the day after an injection; for me it made me a little lupus-y the next day. As the dose got stronger, though, the lupus never went away, even on my "off days." I've heard that interferons can provoke a lupus flare, but that Betaseron was the least likely to do so.

I'm looking to see if anyone else had the same experience, and whether you tried another interferon successfully (no lupus agitation).

Thanks!

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

You can find a good number of fellow friends here, to assist you:

http://neurotalk.psychcentral.com/forum17.html

Again welcome, looking forward to seeing you around.

Darlene

Hello, and welcome to NT! This is a great place with many caring, friendly, and helpful people.

We're so glad you found us!