User Reviews for Saphnelo intravenous

I am on my 3rd infusion. The week after it, I'm extremely nauseous, fatigued, flu -like, dizzy, , but.. my mind feels less lupus fog. No lupus rash. Lost 10 lbs. Please note. Starting this infusion. I've cracked 3 teeth. I'm almost certain it's the infusion. I can replace my teeth. Holding on for better results. Time will tell. Hugs my lupus brothers and sisters xoxo

I started the saphnelo 3days ago and usually I could deal with the joint pain but I haven't been able to sleep because every joint and bone everything hurts so bad even my face my back my arms my legs my feet you name it and it hurts so bad even walking hurts it hasn't been that long so I don't know if it's the medication but after the reviews it seems it is. I have been a guinea pig since 2016 and every medicine has given me a bad side affect except benlysta unfortunately it stopped working for me so I don't know what is my next step but I'm only 30 feeling like a 70 year old.Read More Read Less

Diagnosed in 2015. I've tried 10-15 different meds and nothing but Prednisone has worked until now. Which is super sad because the joint pain since receiving my 3rd infusion is unbearable. First 2 went perfectly. I was even able to get down to 1 1/2 mg of Prednisone a day. I never have experienced joint pain and this is real bad. It's like they are full of fluid and the ones that hurt the most are the elbows. Odd, because that's where the infusions are administered. Doctor wants me to take a break and retry later this year. Why can't they just make Prednisone safer. It's a miracle drug!Read More Read Less

I am three and a half weeks in. I’m having a lot of dizziness. I won’t be able to continue the drug if this doesn’t go away by the next infusion. I do believe it has decreased fatigue. Any feedback about the dizziness. Does it go away?

My doctor told me that this would be the best thing for me to get the Sephnelo infusion and every since I’ve been on it it’s been a series of issues for me. I’m dizzy, extremely fatigued, my blood pressure is up and down, tingling and numbness sensation in my head sometimes, pulse rate keep going up and she doesn’t think it’s the drug. I want this out of my system asap. The shortness of breath is horrible. I’ll never do this again in my life. So Help me God!!

Before Saphnelo: I was accepting my life changes with SLE (sjogrens and sarcoidosis of lungs too). It all started in 1998. I’ve tried plaquinil and more recently Benlysta; both were bad for me. I’m currently on Prednisone 5mg/day, methotrexate 10mg/week, and Celebrex 200mg 2x/day. My numbers are pretty good. I can deal with the joint pain (greatly diminished). My big complaint, what keeps me from having a full life, is the fatigue. I’ll get it for a day or two, or sometimes even weeks at a time. Enter Saphnelo: I guess my doctor thought Saphnelo would get me off prednisone (25 years) and get my energy back. It did not. The infusions would keep me in bed for days with flu-like symptoms, though that gradually lessened. But after 8 monthly infusions, I am more fatigued, more flareups, losing hair (especially the week after), have weight gain (I’ve never had a problem before but suspect the light nausea has me eating sweets to get rid of it)… I just told my doctor I am discontinuing this treatment. I miss my friends and want to get back to my pre-Saphnelo life. Maybe it will help someone with severe SLE, but for me, the side effects made it worse. Read More Read Less

gaining weight while on md prescribed diet. Too much pain to exercise or even do anything. either sleeping or in bathroom with side effects. nausea, itching, dizziness, severe headache. this one is the worst poison. I now even have more joint swelling!!! You made me old.

I started Saphnelo November of 2022. Taking it every 4 weeks. It was hard for me play with my 5 year old due to joint pains and felt fatigued most days. The improvement was gradual with reduced flares and duration of flares over time. Sometimes I would think it’s working and at other times I would feel like it was not. However as of February 2023 I have to say it is working with significant decrease in fatigue and joint pains. I have seen posts on weight gain. In order to take some personal control of my fairly acute joint pains I started to exercise 5 days a week and although I have lost a lot of fat my weight has remarkably not gone done. Today I am willing to say exercise and Saphnelo has changed my life. It was painful to play with my 5 year old and now I am doing fairy intense work outs. I am 3 months in and will write again after 3 months..ie 6 months of taking the drug. Keep hopeful and grateful for this things you can do and get on the offense vs letting Lupus put in a defense mode! Read More Read Less

I am on my second infusion and have been “sick” since the week after my first. Although the rash on my skin was alleviated (the reason I switched from Benlysta) I am now fighting a heavy annoying cough, hoarse voice and severe fatigue. I also had a random 3 days where my nose and eyes were swollen (which went away after a few hours). I am pretty bummed because I was happy that my rash disappeared. I have been living with Lupus for 19 years.

I just had my 7th infusion today. Overall, Saphnelo has not been “the” answer I had hoped for. My blood markers are better, but my daily symptoms are still just ok. Really fluish all the time; lots of pain; high fatigue; hair loss; facial rash; etc. Side effects had seemed to be minimal, but I have been having a really weird metallic sort of nauseous feeling, with strong headache, that has been bothering me more and more over the last couple months. Today it got bad right after my infusion, which made me wonder if it is related to the Saphnelo. So hard to tell since it is so new. I have been able to drop from 30 mg daily prednisone to only 5mg, while also on Plaquenil and Methotrexate. I had tried Benlysta as both a shot (six months…was really helping) and then again as an infusion but I had allergic reactions to both. Read More Read Less

Nothing has happened yet. Only had one infusion so far. I am still painful, VERY fatigued and feeling fluish. Prayerfully the next disease improves something of these ridiculous symptoms

Saphnelo seems to help for 3 weeks. The week before my infusion I am miserable. I too have gained a lot of weight. Also, I notice that my skin feels like it is burning from the inside out for the first few days

Diagnose with lupus SLE 34 years now tried everything NSAIDS, plaquenil, chemo, biologicals...only real relief is from prednisone currently on 10mg. Very hopeful about Saphnelo. Due for 6th Infusion Benefits: severe skin rashes redness and soreness noticable improvements especially in scalp completely cleared up by 2nd Infusion. Joint stiffness in hands less. Additionally my BP tremendously lowered I take 1/2 BP med until last 2wks before next Infusion it goes back up. Side effects: Initially sore throat headache, Slight nausea, Tiredness. Ongoing earache. Weight gain about 8lbs in 6mos?? At 5th infusion Small Itchy red Spots on stomach and legs, used Witch Hazel for itching went away. Increased Sun sensitivity. Recently Extreme leg pain only relief muscle relaxers (MRI shows herniated disc's) but pain is from inflammation pinched nerve. Stopping Infusions to see if related to Saphnelo. Called Astrazenica helpline several times no real help. Please stay encouraged and informed. My rheumatologist says drug too new info not out there. We as patients have to share info and help each other. Thank you Read More Read Less

I started the Saphnelo infusions in December 2021 after my doctor suggested that I should give it a try to see if it would at least keep my flares/symptoms at a minimum and not get worse. I was a little nervous but I prayed about it and decided to give it a try. A few days ago I took my 7th treatment and so far it's been okay. I've noticed that I'm not as stiff, I'm sleeping better at night, and the pain in my lower back isn't as bad. I still feel fatigue at times but not as much as before. However, I've gained quite a bit of weight since starting the Saphnelo and I get an unusual itch under my skin (usually on the knees or legs) that's annoying because the more I scratch, it doesn't go away. I've put cortisone cream on it and it seems to calm it down. Not sure if it's directly from the Saphnelo but I don't ever remember having the itch beforehand. Thank goodness it comes & goes and isn't a constant issue. I'm glad to read the reviews about everyone else experience with Saphnelo and that I'm not the only one giving it a trial run. I will update again soon. Blessings upon everyone. Read More Read Less

I have noticed less pain. However I am gaining an insurmountable amount of weight and no one can tell me if it is due to this drug. I am on throid meds for seniors Anyone else having this problem?

I have been getting Saphnelo infused every 4 weeks since October 2021. I just had my 7th dose today. I cannot begin to tell you how much it has improved my life. My pain levels have dropped so significantly that I have actually done things like hiking and cleaning my windows. This has been a lifesaver for me.

I started Saphnelo in January. I have had 3 treatments so far. I have tried many other treatments for my SLE but no improvement for my pain or fatigue. Over the last month I noticed a little improvement to my pain. Unfortunately my skin is suffering a terrible reaction. It has affected my face, neck and hands and I still suffer from fatigue. I will post updates over the next few treatments.

So far so good, i was in benlysta a few years ago for almost 1 year but i didnt see any improvement. With saphnelo i have seem improvement since the 1st month and even been able to reduce my prednisone dosage. My doctor says most patients start seen real improvement after 6 months but i. Already happy with my improvement. I was hesitating at 1st because i didnt want to be a guinea pig but i had already tried all other options for lupus and nothing was helping me for this strong flare i was having. The only side effect i notice is that i sweat more than usual, and living in florida make it even worst. Read More Read Less

I guess I’ll be the first to write a review of this medicine! I can’t say how well it’s worked for me because I just started it yesterday. I will update frequently. It was much easier than Benlysta; no Benedryl needed and the infusion is only 30 minutes as opposed to 1-1.5 hrs. I stopped responding to Benlysta and I was scared to make the call to try Saphnelo. I don’t like being the Guinea pig, but I am desperate for relief from pain, fatigue, etc. I had absolutely no reaction or side effect from and it’s been 30 hours, so let’s pray it stays that way. Good luck to all of you with this horrible disease! ??Read More Read Less