How come getting my weekly Benlysta shot in my LEFT leg makes my RIGHT leg hurt!?
October 29, 2026 at 4:31 AM
How come getting my weekly Benlysta shot in my LEFT leg makes my RIGHT leg hurt!?
i havent said anything about it here yet, but i got approved for benlysta a while back and i finally start my first round of it this week :)
October 19, 2026 at 4:49 PM
i havent said anything about it here yet, but i got approved for benlysta a while back and i finally start my first round of it this week :)
Lupus in the News: A study of the two most common biologics for SLE, Benlysta (belimumab) and Saphnelo (anifrolumab), found that Saphnelo was associated with a significantly lower risk for cardiovascular disease events, like heart failure or stroke.
Link: https://ow.ly/OsL550ZYYYV~
Link: https://ow.ly/OsL550ZYYYV~
October 19, 2026 at 3:07 PM
Lupus in the News: A study of the two most common biologics for SLE, Benlysta (belimumab) and Saphnelo (anifrolumab), found that Saphnelo was associated with a significantly lower risk for cardiovascular disease events, like heart failure or stroke.
Link: https://ow.ly/OsL550ZYYYV~
Link: https://ow.ly/OsL550ZYYYV~
Benlysta, biologiskt läkemedel. Men jag har varit febrig så då ska man inte ta den (inte febrig nu).
October 5, 2026 at 6:41 PM
Benlysta, biologiskt läkemedel. Men jag har varit febrig så då ska man inte ta den (inte febrig nu).
I do it 4x, was doing benlysta before. I have done CellCept but could not tolerate it. I feel like I have tried so many meds:Saphnelo, methotrexate, Azothiprine etc etc Also Lefludomide daily (instead of HCQ)
September 29, 2026 at 10:59 PM
I do it 4x, was doing benlysta before. I have done CellCept but could not tolerate it. I feel like I have tried so many meds:Saphnelo, methotrexate, Azothiprine etc etc Also Lefludomide daily (instead of HCQ)
I've heard of that! Twice a year but I started at 5(?) I lost count. Plus benlysta (on pause while I have uti 🙄) and Cellcept daily (maxed out). Hx of chemo. No spleen... What are we supposed to do?! I've never felt more vulnerable in my life. It's overwhelming.
September 29, 2026 at 10:37 PM
I've heard of that! Twice a year but I started at 5(?) I lost count. Plus benlysta (on pause while I have uti 🙄) and Cellcept daily (maxed out). Hx of chemo. No spleen... What are we supposed to do?! I've never felt more vulnerable in my life. It's overwhelming.
It may be different with different immunosuppressants and different diseases! But I’ve had to go off when I was on methotrexate, and I have to now that I’m on Benlysta.
September 29, 2026 at 10:14 PM
It may be different with different immunosuppressants and different diseases! But I’ve had to go off when I was on methotrexate, and I have to now that I’m on Benlysta.
what a week this is turning into 😮💨
headed to get my tetanus booster this morning, thanks to a bad cut from my metal bed frame last night 🙃
benlysta injection tomorrow
& then getting the flu & covid vaccines on saturday.
my body is about to be PISSED at me 😅
headed to get my tetanus booster this morning, thanks to a bad cut from my metal bed frame last night 🙃
benlysta injection tomorrow
& then getting the flu & covid vaccines on saturday.
my body is about to be PISSED at me 😅
September 16, 2026 at 2:08 PM
what a week this is turning into 😮💨
headed to get my tetanus booster this morning, thanks to a bad cut from my metal bed frame last night 🙃
benlysta injection tomorrow
& then getting the flu & covid vaccines on saturday.
my body is about to be PISSED at me 😅
headed to get my tetanus booster this morning, thanks to a bad cut from my metal bed frame last night 🙃
benlysta injection tomorrow
& then getting the flu & covid vaccines on saturday.
my body is about to be PISSED at me 😅
Benlysta i låret. Satte den nog inte riktigt där den skulle sitta för det var lite som att köra in lava i huden.
August 24, 2026 at 3:58 PM
Benlysta i låret. Satte den nog inte riktigt där den skulle sitta för det var lite som att köra in lava i huden.
- Lupus (SLE) meds - Benlysta shots and Prednisone - suppress my super strong immune system so it does not kill me.
- Methotrexate - weekly dose for my Rheumatoid Arthritis
- Effexor - Mainly helps stop the paresthesia tingling/numbness from my fibromyalgia.
- Methotrexate - weekly dose for my Rheumatoid Arthritis
- Effexor - Mainly helps stop the paresthesia tingling/numbness from my fibromyalgia.
August 13, 2026 at 5:40 AM
- Lupus (SLE) meds - Benlysta shots and Prednisone - suppress my super strong immune system so it does not kill me.
- Methotrexate - weekly dose for my Rheumatoid Arthritis
- Effexor - Mainly helps stop the paresthesia tingling/numbness from my fibromyalgia.
- Methotrexate - weekly dose for my Rheumatoid Arthritis
- Effexor - Mainly helps stop the paresthesia tingling/numbness from my fibromyalgia.
Jag är den enda patienten på reuma i Västerås som fått "tillbaka" hörseln av Benlysta så nu vet alla läkare där vem jag är. Och min läkare är glad för det var första gången hen skrev ut den medicinen till någon 😄
August 12, 2026 at 11:00 AM
Jag är den enda patienten på reuma i Västerås som fått "tillbaka" hörseln av Benlysta så nu vet alla läkare där vem jag är. Och min läkare är glad för det var första gången hen skrev ut den medicinen till någon 😄
Sprutorna var sånt jäkla rävgift på mig. Benlysta är snällare.
August 10, 2026 at 4:38 PM
Sprutorna var sånt jäkla rävgift på mig. Benlysta är snällare.
FDA Approves Benlysta Autoinjector for Treatment of Children with Lupus Nephritis
www.lupus.org/news/fda-app...
@lupus.org
www.lupus.org/news/fda-app...
@lupus.org
FDA Approves Benlysta Autoinjector for Treatment of Children with Lupus Nephritis
The U.S. Food & Drug Administration (FDA) has granted approval for a new subcutaneous autoinjector formulation of belimumab (Benlysta®) treatment for children ages five years and older with active lup...
www.lupus.org
July 4, 2025 at 3:37 PM
FDA Approves Benlysta Autoinjector for Treatment of Children with Lupus Nephritis
www.lupus.org/news/fda-app...
@lupus.org
www.lupus.org/news/fda-app...
@lupus.org
Är det en biverkning av Benlysta?
July 27, 2026 at 4:34 AM
Är det en biverkning av Benlysta?
😦… does this mean taking another med like that (Benlysta for example) could result in this reaction too?
July 16, 2025 at 3:52 AM
😦… does this mean taking another med like that (Benlysta for example) could result in this reaction too?
So insurance won't pay for the patient to get their 640mg of benlysta from us (400mg vial + 2x 120mg vials). Instead they force the patient to get 800mg benlysta shipped from a specialty pharmacy, 20% of which will be thrown into the garbage as waste. I fucking hate this place
September 15, 2023 at 6:36 PM
So insurance won't pay for the patient to get their 640mg of benlysta from us (400mg vial + 2x 120mg vials). Instead they force the patient to get 800mg benlysta shipped from a specialty pharmacy, 20% of which will be thrown into the garbage as waste. I fucking hate this place
It’s crazy that we don’t use biologics earlier on in the treatment of autoimmune diseases. I’ve been trying out different drugs since 2019 and the only drug besides steroids that has put me into a near-total remission is Benlysta. Why was I forced to suffer for so long?
September 12, 2025 at 6:10 PM
It’s crazy that we don’t use biologics earlier on in the treatment of autoimmune diseases. I’ve been trying out different drugs since 2019 and the only drug besides steroids that has put me into a near-total remission is Benlysta. Why was I forced to suffer for so long?
Mine, too ;-) I was part of the original 12 person global research study for biologicals and Lupus, abt 15 years ago. They saved my life at the time during a brief JHH stay. It turned into Benlysta down the road. I've been in remission w/flares since. This is the next step from biologicals ;-)
November 20, 2024 at 6:22 PM
Mine, too ;-) I was part of the original 12 person global research study for biologicals and Lupus, abt 15 years ago. They saved my life at the time during a brief JHH stay. It turned into Benlysta down the road. I've been in remission w/flares since. This is the next step from biologicals ;-)
have you tried asking to do infusions? i was on benlysta infusion before and i just go in once a month
March 7, 2025 at 5:40 AM
have you tried asking to do infusions? i was on benlysta infusion before and i just go in once a month
thanks for the respect man, but it’s actually my treatment for lupus - an injection of benlysta… not heroin. 🫡
June 17, 2025 at 4:23 PM
thanks for the respect man, but it’s actually my treatment for lupus - an injection of benlysta… not heroin. 🫡
My treatment plan for lupus nephritis 😞
💉Have to take Benlysta injections and they need to be refrigerated and when I travel I have to put them in a cooler
💊Bumped up prednisone from 4 mg to 10 mg and eventually taper to 5 mg
💊Stopped imuran and back on cellcept and
💉Have to take Benlysta injections and they need to be refrigerated and when I travel I have to put them in a cooler
💊Bumped up prednisone from 4 mg to 10 mg and eventually taper to 5 mg
💊Stopped imuran and back on cellcept and
May 15, 2025 at 6:28 PM
My treatment plan for lupus nephritis 😞
💉Have to take Benlysta injections and they need to be refrigerated and when I travel I have to put them in a cooler
💊Bumped up prednisone from 4 mg to 10 mg and eventually taper to 5 mg
💊Stopped imuran and back on cellcept and
💉Have to take Benlysta injections and they need to be refrigerated and when I travel I have to put them in a cooler
💊Bumped up prednisone from 4 mg to 10 mg and eventually taper to 5 mg
💊Stopped imuran and back on cellcept and
September 28, 2025 at 6:17 AM
🫄Article by Dr. Siegel & Dr. Sammaritano supports #Benlysta & #Saphnelo in pregnancy.
www.lupusencyclopedia.com/successful-l...
I use biologics, such as Benlysta and Saphnelo, during pregnancy. I try to stop the biologic late in the 2nd trimester in order not to affect the newborn's immune system.
www.lupusencyclopedia.com/successful-l...
I use biologics, such as Benlysta and Saphnelo, during pregnancy. I try to stop the biologic late in the 2nd trimester in order not to affect the newborn's immune system.
How to have a successful pregnancy when you have lupus
Most patients with lupus can now have a successful pregnancy if they plan for it properly. My new blog post gives an easy-to-follow step-by-step list of recommendations. SHARE with everyone who may be...
www.lupusencyclopedia.com
April 13, 2026 at 8:48 PM
🫄Article by Dr. Siegel & Dr. Sammaritano supports #Benlysta & #Saphnelo in pregnancy.
www.lupusencyclopedia.com/successful-l...
I use biologics, such as Benlysta and Saphnelo, during pregnancy. I try to stop the biologic late in the 2nd trimester in order not to affect the newborn's immune system.
www.lupusencyclopedia.com/successful-l...
I use biologics, such as Benlysta and Saphnelo, during pregnancy. I try to stop the biologic late in the 2nd trimester in order not to affect the newborn's immune system.
🔥 Triple Immune Therapy shown superior for peds #lupus nephritis (LN)! #SLE
lupus.bmj.com/content/11/2...
👉I am a huge proponent for triple immunosuppressants for new onset proliferative LN
lupus.bmj.com/content/11/2...
#Benlysta (BEL) + mycophenolate (MMF)/cyclophosphamide (CYC) + steroids
lupus.bmj.com/content/11/2...
👉I am a huge proponent for triple immunosuppressants for new onset proliferative LN
lupus.bmj.com/content/11/2...
#Benlysta (BEL) + mycophenolate (MMF)/cyclophosphamide (CYC) + steroids
Efficacy of initial combination with belimumab in newly diagnosed childhood-onset lupus nephritis: a single-centre historical control study
Objective To explore the efficacy of initial treatment of newly diagnosed childhood-onset lupus nephritis (cLN) with combination of belimumab and either cyclophosphamide, mycophenolate mofetil, tacrol...
lupus.bmj.com
January 4, 2025 at 9:16 PM
🔥 Triple Immune Therapy shown superior for peds #lupus nephritis (LN)! #SLE
lupus.bmj.com/content/11/2...
👉I am a huge proponent for triple immunosuppressants for new onset proliferative LN
lupus.bmj.com/content/11/2...
#Benlysta (BEL) + mycophenolate (MMF)/cyclophosphamide (CYC) + steroids
lupus.bmj.com/content/11/2...
👉I am a huge proponent for triple immunosuppressants for new onset proliferative LN
lupus.bmj.com/content/11/2...
#Benlysta (BEL) + mycophenolate (MMF)/cyclophosphamide (CYC) + steroids
I was really nervous to inject my new lupus med. The Benlysta pamphlet is very doom and gloom featuring possible side effects of cancer, brain infection, death. 😅 Paced around and stared at it for a bit. But I did it.
#lupus #autoimmunedisease #chronicillness
#lupus #autoimmunedisease #chronicillness
March 25, 2025 at 4:37 PM
I was really nervous to inject my new lupus med. The Benlysta pamphlet is very doom and gloom featuring possible side effects of cancer, brain infection, death. 😅 Paced around and stared at it for a bit. But I did it.
#lupus #autoimmunedisease #chronicillness
#lupus #autoimmunedisease #chronicillness