Lupus Support Group

I know alot of you have had the infusions done but today was my first one and for anyone out their asking any question about it I haven't had any problems so far hopefully it will stay that way I go in two weeks for my next one.I just wanted to share. Hope everyone is doing well and God Bless you all.

I am not on Benlysta but we have many group members who are and they seem to be doing pretty well with their treatments. I think there is a facebook group for Benlysta I guess one of them will share the group I think it is much more informative since you have patients who are actually experiencing the treatments. Good luck and I hope you keep feeling well.

I'm on Benlysta. Just had 3rd infusion last Monday. I do pretty good. The first couple days it make things worse (pain/stiffness), but then I start feeling better and actually have some energy to do things. It lasts a couple weeks then everything starts over with the next infusion.

Benlysta Buddies is the group name....PM Nurse Black and she can get you in the group if you are interested

I'm not on Benlysta infusions but am on Rituxan infusions every other week....this is my second year of infusions and I am finally feeling better, haven't had any major Lupus flares such as vertigo, migraines, fogginess and I can think clearly for the first time in 10 years.

Lupus05....I will pray that these infusions help with your Lupus.

Eva

Lupus05 and Cjl the group is benlysta buddies on Facebook. its a closed group so only members can read what is written within the group. all you have to do is search for the group page and request to be added. Nurseblack, myself, along with two other members of adjunction ( i forgot their handle..as the three of us don't regular this page as much as Nurseblack does) are admins and we would love to add you. we have members ranging from trying to decide to members that are part of the long term study and have been on benlysta 7 years and counting.. hope to see you soon and best wishes on your new journey!

Wow, I didn't even know Benlysta was available 7 years ago!

Lisa

Gemini 72. Thanks for the info. I just sent my join request to Benlysta Buddies.

Dodson: Actually we have an infusion nurse who participated in the trials for 8 years. She shares info on Benlysta Buddies.

I'm not on Benlysta, but I'm in the group to get as much information as possible, just in case my current meds stop working for me. It's a great group. Just like this one.