Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
Is anyone else out ther taking Benlysta?
I am curious how it is working so far!
Had my first infusion yesterday. Didn't feel much different after, but work up this morning feeling strangely different!! Still swollen, but improved. Joints are still achy but improved.
Is this for real or just my brain playing tricks on my body in the hopes that this will be the treatment to work?
Interested to hear if anyone else has had improvement this soon or at all!
Thanks
I am curious how it is working so far!
Had my first infusion yesterday. Didn't feel much different after, but work up this morning feeling strangely different!! Still swollen, but improved. Joints are still achy but improved.
Is this for real or just my brain playing tricks on my body in the hopes that this will be the treatment to work?
Interested to hear if anyone else has had improvement this soon or at all!
Thanks
you have lupus in addition to Sjogren's? I may only have Sjogren's (may also have MCTD but 7 years and still no definitive diagnosis) and I don't know if I can be given Benlysta unless I have lupus.
Did your rheumy order Benlysta for you?
I would be very interested to hear how you are doing on Benlysta, especially whether it improves your dryness symptoms. Would you please keep us posted.
I really really hope that Benlysta does wonderful things for you!
Yes, I have Lupus and SJS. You do have have a doctors prescription to get the medication because it has to be administered IV over an hour.
My rheumy has been telling me for a while that he feels the Lupus is not my issue and that Sjogren's is my deamon. When he first prescribed it, I asked him if it would affect the SJS the same way as it was supposed to affect Lupus. He said DEFINITELY!!
He said that most autoimmune diseases affect the same immune cells and that what this medication does is surpress those immune cells.
The day after my first treatment, I felt good!! Not the way I was 10 years ago, but better than I have felt in a long time. Unfortunately, it only lasted about a day and a half!! Today, so far, I am feeling just like I did before the treatment!! Kinda frustrated, but I think that is why they stack the treatments the way they do.
If you feel that you have anything autoimmune going on and your doctor agrees, ask about the Benlysta!
Good luck and keep in touch to let me know how it goes!
I hope that you are one of those for whom Benlysta brings about a remission - wouldn't that be wonderful?!!! I am cheering for you and hoping that you just keep getting better and better!
Best to you.