Benlysta-has anyone taken it? Good/Bad/to new to tell?
Hello Rae,
I've not taken Benlysta to give you any advice with it but member's will answer in due course and here's a link about the medication in the meantime.
http://www.medicinenet.com/script/main/art.asp?articlekey=140664
Love Terri xxx
I havent taking benlysta but my friend has and she say it works…i am in Rituxan wich its an infusion also…they are kinda similar and mine works so far…love Dunnia…
I am not on it, but there are 2 lovley ladies in my local support group that are on it and the LOVE it. I am being tested to see if I can get into a drug studie that is very simular to Benlysta.
Hi Rae,
I just joined this group and I'm happy that I can share my experiences with Benlysta. I had my first infusion on March 28th and I just had my 6th infusion yesterday morning (7/23). I'm starting to think I'm one of those people whose body isn't reacting positively. I haven't noticed any benefits yet - I still have joint pain and swelling, fatigue, mouth sores, etc. despite being on methotrexate, Plaquenil, Imuran and prednisone. I experience nausea, low grade fever, headache and extreme fatigue after each infusion. Those symptoms usually last 3-7 days. I've been decreasing the prednisone very very slowly over these last 4 months to 15 mg (I've been on that drug for 3 years, mostly at 20 mg or above). My whole motivation to try Benlysta was the promise that I could get off prednisone but I've found that if I go below 15 mg my symptoms get worse. I plan to give Benlysta another 3 months and if I still don't see any benefit then I'm quitting.
My main issue is brain lesions - I had a severe episode of lupus meningitis 3 years ago and I've never recovered from that. Ugh! I was doing great for many years prior to the meningitis and I keep trying to get back to that previous state of stability.
Thanks for listening!
Erica
Dear Erica,
I am so very sorry to know of your meningitis, and the aftermath. I hope that the med will work wonders for you and Raye! Kiss and hug that beautiful child of yours for me! Nothing like a baby!
Wishing you both WELL!
Hugs,
SK
Thanks for sharing Erica. I have had a little improvment with Benlysta. I am starting to notice a few days of energy that I have not had in a long time. I am having irritation where the medicine leaked into the tissue or someting. It burns kinda feels like a blood clot, but the doctors are saying no. Trading one pain for another :(
PNW said:
Hi Rae,
I just joined this group and I'm happy that I can share my experiences with Benlysta. I had my first infusion on March 28th and I just had my 6th infusion yesterday morning (7/23). I'm starting to think I'm one of those people whose body isn't reacting positively. I haven't noticed any benefits yet - I still have joint pain and swelling, fatigue, mouth sores, etc. despite being on methotrexate, Plaquenil, Imuran and prednisone. I experience nausea, low grade fever, headache and extreme fatigue after each infusion. Those symptoms usually last 3-7 days. I've been decreasing the prednisone very very slowly over these last 4 months to 15 mg (I've been on that drug for 3 years, mostly at 20 mg or above). My whole motivation to try Benlysta was the promise that I could get off prednisone but I've found that if I go below 15 mg my symptoms get worse. I plan to give Benlysta another 3 months and if I still don't see any benefit then I'm quitting.
My main issue is brain lesions - I had a severe episode of lupus meningitis 3 years ago and I've never recovered from that. Ugh! I was doing great for many years prior to the meningitis and I keep trying to get back to that previous state of stability.
Thanks for listening!
Erica
Hi Rae,
I'm very happy to hear that you're seeing some bursts of energy. I sincerely hope that it continues. How long have you been on Benlysta? I'm trying to gauge how long I should stay on it to see some benefits.
Rae said:
Thanks for sharing Erica. I have had a little improvment with Benlysta. I am starting to notice a few days of energy that I have not had in a long time. I am having irritation where the medicine leaked into the tissue or someting. It burns kinda feels like a blood clot, but the doctors are saying no. Trading one pain for another :(
PNW said:Hi Rae,
I just joined this group and I'm happy that I can share my experiences with Benlysta. I had my first infusion on March 28th and I just had my 6th infusion yesterday morning (7/23). I'm starting to think I'm one of those people whose body isn't reacting positively. I haven't noticed any benefits yet - I still have joint pain and swelling, fatigue, mouth sores, etc. despite being on methotrexate, Plaquenil, Imuran and prednisone. I experience nausea, low grade fever, headache and extreme fatigue after each infusion. Those symptoms usually last 3-7 days. I've been decreasing the prednisone very very slowly over these last 4 months to 15 mg (I've been on that drug for 3 years, mostly at 20 mg or above). My whole motivation to try Benlysta was the promise that I could get off prednisone but I've found that if I go below 15 mg my symptoms get worse. I plan to give Benlysta another 3 months and if I still don't see any benefit then I'm quitting.
My main issue is brain lesions - I had a severe episode of lupus meningitis 3 years ago and I've never recovered from that. Ugh! I was doing great for many years prior to the meningitis and I keep trying to get back to that previous state of stability.
Thanks for listening!
Erica
I felt changes on the second day of my first infusion. I have had three infusions over the past 6 weeks. I have heard that it only works in a small number of people. It also works different in different people. It is supported to be attaching to the cells. Just because you dont feel it doesnt mean it is not helping. I would wait until you discuss what reasonable expectation and time frames should be. It is still so new, only time will tell what this drug is doing. Good Luck
PNW said:
Hi Rae,
I'm very happy to hear that you're seeing some bursts of energy. I sincerely hope that it continues. How long have you been on Benlysta? I'm trying to gauge how long I should stay on it to see some benefits.
Rae said:Thanks for sharing Erica. I have had a little improvment with Benlysta. I am starting to notice a few days of energy that I have not had in a long time. I am having irritation where the medicine leaked into the tissue or someting. It burns kinda feels like a blood clot, but the doctors are saying no. Trading one pain for another :(
PNW said:Hi Rae,
I just joined this group and I'm happy that I can share my experiences with Benlysta. I had my first infusion on March 28th and I just had my 6th infusion yesterday morning (7/23). I'm starting to think I'm one of those people whose body isn't reacting positively. I haven't noticed any benefits yet - I still have joint pain and swelling, fatigue, mouth sores, etc. despite being on methotrexate, Plaquenil, Imuran and prednisone. I experience nausea, low grade fever, headache and extreme fatigue after each infusion. Those symptoms usually last 3-7 days. I've been decreasing the prednisone very very slowly over these last 4 months to 15 mg (I've been on that drug for 3 years, mostly at 20 mg or above). My whole motivation to try Benlysta was the promise that I could get off prednisone but I've found that if I go below 15 mg my symptoms get worse. I plan to give Benlysta another 3 months and if I still don't see any benefit then I'm quitting.
My main issue is brain lesions - I had a severe episode of lupus meningitis 3 years ago and I've never recovered from that. Ugh! I was doing great for many years prior to the meningitis and I keep trying to get back to that previous state of stability.
Thanks for listening!
Erica
Hello Rae,
Are you still feeling ok with the Benlysta?....please update we when you can.
Love Terri xxx
Hi SK,
You're exactly right - holding a baby makes everything better.
I woke up this morning feeling good - something that hasn't happened in 3 years. I was SO excited this morning! Maybe the Benlysta is starting to work. I'm hoping that this isn't a random event and that I'll have more of these days.
SK said:
Dear Erica,
I am so very sorry to know of your meningitis, and the aftermath. I hope that the med will work wonders for you and Raye! Kiss and hug that beautiful child of yours for me! Nothing like a baby!
Wishing you both WELL!
Hugs,
SK
Three days after having my third infusion I had something happen. A pop behind my left I followed by 11 hours of pain in my head, vomitting and diarrea. Then a trip to the ER. My test results came back good, no sickness. They are still not sure if it is a side effect of medicine or just lupus. My Dr will decide on 08/15 if I can get it again. :(
Hello Rae,
The only thing i can think of as lupus suffers do have it besides you having the infusion...is a blood vessel bursting as i have this and it can course severe pain to the head but i've never experienced vomitting or diarrea with it...but when they do burst they can give off some symptoms at times.
Well i hope other member's can help in the meantime but at least you'll know for sure on the 15th and all the best Rae.
Love Terri xxx
The doctor and drug reps are confussed. They want me to go ahead and have my next infusion on 08/22/12. They said if it happens again, we will know that it likely caused it.
Hello Rae,
Well that sounds well mate...go ahead and have another infussion, who's having the bad affects if it does happen, never known nothing like it with some specialists.
What you going to do Rae have another and risk it? plus how you been feeling since having the infusion.
Love Terri xxx
I am waiting for the approval to come from the insurance company to start the infusions. I am putting all hope in this benlysta, as I has seen my physical health deterioate at record speed, since my diagnosis 6 months ago. Every day, I find myself with less strength, and more pain. Is there anything that anyone out there can advise me besides medication?? lifestyle, or diet remedies??? I feel very alone, and scared.