[Fairy]

Tis official - the lupus is back (I'm not sure how much it ever went away, but never mind!), and so are some of my B-cells. My steroids have been bumped up to 15mg, so hopefully I'll have more energy to get through Christmas and New Year, then I'll get the rituximab in January - fingers crossed it has a cumulative effect and works better this time. I'm quite happy with that, at the moment I'm just relieved he didn't tell me I needed cyclophosphamide. It looks like the small dose (25mg every other day) of aza might have to be stopped soon too, cos my white cells seem to be on their way out again - I'm very thankful for the steroids at the moment...

I've got an excuse to feast on junk food over Christmas now - need to put the weight back on that I've lost :lol:

Hope you're all feeling well :hehe:

 

[KarolH]

Hi Fairy,

Sorry your lupus has visited again but I do hope the steroids work for you, give you energy and help you to eat, eat, eat and get that lost weight back.

Enjoy your holidays and let us know how you get along.:wink2:

 

[msluped]

I just registered at this site and had a question about your numbers and needing rituximab again.

I'm currently on my 11th month of cytoxan and my anti-ds-dna numbers just came back at 1,160
(Our lab is negative for lupus at 99 and below.) This is the second time they have come back over 1,000. When I was at 6 months of chemo, they were 1,500's, so the Mayo Clinic kept me on it for 12 months straight. Before, when I could barely walk, didn't know where I was, they were only in the 300-500's. :wink2:

Nothing seems to get them under control. I just thought I was finally tapered down off the steroids to 4mg--trying to get all the way down to 0, but I started flaring again. At least the numbers verified I wasn't going crazy. They just barely bumped me up to 10mg...I wonder if I will ever be able to get off steroids in my entire life? I'm only 34.

Do any of you have any experience of what they do after 12months of cytoxan and no improvement. I have CNS lupus with a lot of encephalopathy, o-bands, lesions (but no new ones since the cytoxan). I think they are talking about taking me back to the Imuran and possibly trying the rituximab???

I'm supposed to fly all the way back to Rochester, MN for a final dx on the MS with the Lupus, but they are only going to take my blood and urine which they do here at home every week. I do not see the need to fly up there and can't afford it!

Thanks for any advice. Confused and don't know what to do! My neuropathy is killing me and the stress of all of this only makes it worse. My rheumie had the nerve to tell me to see a shrink if it was making my neuropathy worse and go see my neurologist. I'm already on the max of neuropathy meds. I already take 32 pills a day. I DON'T NEED ANY MORE> Thanks for the vent! Happy Holidays! And thanks for letting me join!
Have any of you ever heard of someone having outrageous positive anti-ds-dna numbers but not having active disease? Can you find any research supporting this? :rotfl: Just looking for something! ! HAPPY NEW YEAR TO ME!!!!:lol:
Caren

 

[lin]

Hi fairy i really hope the up in pred gives you a little boost hun over the christmas period, i also have had mine upped to 30mg for a month and cant say i feel my self ,but i am hoping it will ease things soon

You take care and try to rest as much as you can inbetween i know easier said than done, but save some spoons,

keep well luv Lin xxx

 

[Fairy]

Hi Caren,
I had rituximab for kidney issues - if you do a search for rituximab/rituxan you'll find some threads by people who've had it for CNS stuff. I think it helped in some cases, not so much in others. I can say it got my dsDNA numbers down to the lowest they've been (to around 30, from 2000+, 30 is borderline positive here). I'd say it probably worked for a couple of months, then symptoms started creeping back, and blood results started going off again.

I also didn't manage to get off steroids - I've been on them for seven years, so I can't really see that happening now, boo hiss. I haven't had cytoxan/cyclophosphamide yet, so I can't say how they'd compare, but rituximab is supposed to be easier on you, with less side-effects etc (I had very few problems).

Hi Lin + Karol
I'm very tempted to increase the steroids a little bit more, cos I'm still feeling rough - I need to get through christmas eve/day/boxing day with a little bit of energy (I haven't told my family things are going pear-shaped again). Think I'll collapse in a corner on the 27th :lol:

Merry Christmas everyone :hehe:

 

[Clare.T]

Hello Fairy
I'm sorry you'll need the Rituxan again and just wanted to send you every best wish for better health in the new year. I have heard of a second treatment being more effective
Hugs
Clare

 

[Fairy]

Thanks Clare :hehe: