Med for CNS (brain vasculitis)?

I am wondering if anyone with CNS Lupus has found any effective meds other than prednisone. I have been on pred for months now and I want off but every time I taper it my CNS symptoms get worse. I have been on plaquinil for a couple of years and it does not help. I have tried benlysta and am on methotrexate.

Thanks

Meg

Meg what about fish oil or flaxseed oil?

I am taking fish oil, should I take flax in addition or is it one or the other?

Hi Meg,

I have pushed for methotrexate as you know as it's good for slowing down the cell rate so try and bare with that more but i did find this info on meds used, yes it states the prednisone but it also states other meds which can be used amongst them plus i'll add the link for you as its good reading on CNS / Vasculitis.

How is central nervous system vasculitis treated?

CNS vasculitis is usually treated with steroids. High-dose steroids such as prednisone, in combination with cyclophosphamide (a medication that decreases the immune system’s response to autoimmune diseases), are generally used. In some cases, high-dose steroids alone are tried first; if that does not treat the disease, cyclophosphamide is added. Treatment must be continued for a prolonged period, sometimes for life.

http://my.clevelandclinic.org/disorders/vasculitis/hic_central_nervous_system_vasculitis.aspx

Hugs Terri :)

Hello Meg,

How you doing mate and hows the methotrexate treating you?

Hugs Terri :)

The methotrexate was not too bad this week. I take it Friday nights before bed so I have the weekend to rest. I was a bit sick to my stomach Sat morning and am tired but ok. I think it is getting easier each dose. I am seeing the Rheumy Tues hoping that it goes well and there will be a definite plan forward to get off of the prednisone.

How is it going for you Terri?

Hi meg,

It does'nt sound to bad on you either mate and i do hope your prednisone gets sorted also...i took mine friday evening after my evening meal, saturday nothing and today my legs was weaker fatigue wise and tonight several times with diarrhea but where that's concerned it could be my IBS as i've been constipated for a while and out the blue it turns opposite but it as been making me sleep alot more.lol

I've found this very informative link on the methotrexate and apparentley taken by injection or tablets affects happen within the first 2 days of starting it.

http://www.edmontonrheumatology.com/medications/methotrexate.html

MegLupusNewbie said:

The methotrexate was not too bad this week. I take it Friday nights before bed so I have the weekend to rest. I was a bit sick to my stomach Sat morning and am tired but ok. I think it is getting easier each dose. I am seeing the Rheumy Tues hoping that it goes well and there will be a definite plan forward to get off of the prednisone.

How is it going for you Terri?