Checking in, it's been awhile

dbab

Veteran Member

Joined : Jan 2004

Posts : 4151

Posted 4/22/2013 5:01 PM (GMT -8)

Hey everyone, I haven't been here in forever (not sure if anyone remembers me)... I hope everyone is doing well.

I'm doing ok I guess, waiting for the one day when I feel good again (and still holding out hope). I'm currently on 2000 mg of Cellcept a day, Plaquenil, Pred, and Methotrexate weekly and YES that is a lot. My doc wants me to consider Benlysta but I'm just really scared at this point.

I had an appt today and she gave me a Depo Medrol steroid shot and some samples of Rayos which is a slow release form of prednisone. Is anyone taking this? I won't start this until my shot starts to wear off but curious if anyone had any experience with it. I'm mostly concerned because the directions and my doc said you take it at night, and I'm of course worried that it would keep you up since normally you take Pred in the morning.

Any input would be appreciated. :)

oreo11

Regular Member

Joined : Feb 2011

Posts : 399

Posted 4/22/2013 6:31 PM (GMT -8)

Hi,

I have never heard of Rayos, but I am interested in learning more. I was on Benlysta and went off of it after 8 treatments. Several people on this site have had experience with it. I had no side effects. It just did not do what it was suppose to do....worked well for about 3 months and then poof!

Laura

couchtater

Elite Member

Joined : Jul 2009

Posts : 14475

Posted 4/22/2013 9:01 PM (GMT -8)

I haven't heard of Rayos.
Frankly, I'm scared of the Benlysta. I'm saving it as a last resort.

Lorik

Regular Member

Joined : Feb 2013

Posts : 23

Posted 4/23/2013 4:17 AM (GMT -8)

Dbab,

I'm currently on the same meds except for CellCept which is the next med I believe I will be adding to my daily regiment. Dr had wanted me to start Benlysta but the payments are extreme and the census I have gathered is it doesn't last or doesn't work at all. Like you I'm just looking for SOMETHING to make me able just to feel somewhat normal to get thru a day.
I have not heard of Rayos but am very interested to learn more. Pls post how you do with the med since it might help others.

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