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Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Top 10 Search Results for "Saphnelo"

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I Want A New Drug
A MyLupusTeam Member asked a question 💭

Like the Huey Lewis Song “I want a new drug, one that won’t make me sick. One that won’t make me crash my car, or make me feel three feet thick “ 😁

I see my rheumatologist tomorrow and want to try something else. History: severely allergic to Plaquenil (which sucks). Don’t qualify for Benlysta (there is a two page criteria sheet and I don’t have nephritis or organ involvement). Have been on Methotrexate and it makes me severely iLL.

So, what’s left? I would love a monthly infusion if… read more

A MyLupusTeam Member

Thank you! I promise to report how it goes

Research Good Drs
A MyLupusTeam Member asked a question 💭

The miracle is Saphnelo IV infusions. Something very new . But it works.

A MyLupusTeam Member

It works. You need to watch your food choices. Nothing that causes inflammation. When you have your numbers good with blood work you can introduce other foods moderately. Drink lots of water no… read more

Infusions
A MyLupusTeam Member asked a question 💭

I have been sick with a bad flare for several months. My rheumatologist is putting me on Saphnelo infusions. It is pretty new. Can anyone give me insight or information on this I would really appreciate it . Thanks in advanced.. God bless.

A MyLupusTeam Member

Sorry it has taken so long for me to answer. It took me forever to figure this web page out. I have been on steroids, plaqunil, benlysta . Now starting Saphnelo Tuesday 4-25-23 It has attacked my… read more

Is Anyone Taking The New Lupus Drug Saphnelo?
A MyLupusTeam Member asked a question 💭

I just started getting Saphnelo infusions every four weeks after Benlysta stopped working for me. Is anybody taking Saphnelo and is it helping? Are you having any side effects? So far for me it's too soon to tell.

A MyLupusTeam Member

Thank you! I hope you feel better!

Is Anybody Else Having Issues With Their Kidneys And Protein And Creatinine?
A MyLupusTeam Member asked a question 💭

I have been diagnosed with lupus and a month ago a 24 hour urine protein and creatinine clearance came out abnormally with a protein of almost 300 but a low creatinine number. My nephrologist wanted to do a biopsy but my rheumatologist convinced her to wait a month and redo the test which I just got back the results of. The protein is still abnormal but has lowered somewhat probably because of a low-dose of prednisone I’m on and I’m awaiting an infusion in mid June to start a new treatment… read more

A MyLupusTeam Member

I know you are getting Benlysta infusions from a previous conversation. Benlysta is supposed to work on preventing kidney progression. This news about your kidney tests isn't reassuring about Benlystaread more

Good Morning-has Anyone Gone Through Many Biologics That Were Not Working? If So How Many And Which Worked? Or Nothing Helped. Thank You
A MyLupusTeam Member asked a question 💭
A MyLupusTeam Member

I am a medical doctor and have found that the commercials for the biologics are misleading. I did the blood work which lead to many of my diagnoses of all my autoimmune diseases then went to… read more

Anyone Taking Saphnelo?
A MyLupusTeam Member asked a question 💭

If you are taking Saphnelo:
Did you have a reaction/side effects?
Has it been effective? Reduce your Lupus symptoms?
Had you taken Benlysta before taking Saphnelo?
Thank you.
Aileen

A MyLupusTeam Member

Hi there
I took Benlysta infusions for almost three years and it worked wonderfully for me until the last 8 months, where it became totally ineffective. All the pain, stiffness returned so I was… read more

Opinions On Saphnelo
A MyLupusTeam Member asked a question 💭

My rheumatologist wants me to start Saphnelo. Would appreciate hearing your opinions/reactions, etc.
I have SCLE. I tried Benlysta, but had a terrible reaction so I'm a little hesitant to have the Saphnelo infusions. Seems like result studies show it's "so so."
Thanks everyone. Wishing you all a good day!

A MyLupusTeam Member

Oh no I'm sorry you went through that. I hope this new medication helps you. If I can't afford the Benlysta I will se what else works along with my other medications since I have other auto immune… read more

My Rheumatologist Is Considering Replacing My Benlysta With Saphnelo And My Cellcept With Voclosporin. Anyone Take These With Results?
A MyLupusTeam Member asked a question 💭
A MyLupusTeam Member

@A MyLupusTeam Member
Voclosporin is a pill. Common name is Lupkynis. Was the Benlysta helping you? I felt like it was helping me then it slowly started to lose its effectiveness. I really don't think… read more

Anyone Using Saphnelo
A MyLupusTeam Member asked a question 💭
A MyLupusTeam Member

I'm using Saphnelo. I'm due for my fifth dose in a week. Sometimes I think it's helping and then I think I'm imagining it. Maybe it needs more time to work. Are you using it?