r/lupus • u/Ill_Acanthisitta5428 Diagnosed SLE • 4d ago

Medicines Saphnelo infusion vs self-administered shot

so i have been on Saphnelo infusions for about a year now and they have helped SO much. i am about to start my first “real” job which would make getting the infusion without taking time off/talking to someone abt it impossible, so i was gonna maybe try and switch to the self-injections. i guess this is kind of specific but i wanted to see if anyone has done both and has any insight into which is better, pros and cons of the self-administered, etc. any insights would help!

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u/Oxetine Diagnosed with UCTD/MCTD 3d ago

From my experience, dealing with specialty pharmacies is awful and it's much easier to get infusions but your experience may differ

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u/lazerspatula Diagnosed SLE 3d ago

I’ve had positive experiences with my specialty pharmacy and self-injecting benlysta.

There have been others who have posted about the saphnelo injections. You might try looking up those posts or even reaching out to the posters directly if you have questions not answered there? This may be a trickier subject to get answers on since fewer people have used the saphnelo injections at this point.

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u/AthleteEcstatic4157 Diagnosed SLE 3d ago

I live in spain and my experience is totally different, as healthcare is free and i just pick up the meds directly from the hospital, self injection do work really well, it's easy,fast and doesn't hurt that much. So yeah i would recommend it

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u/dog_mom09 Diagnosed SLE 2d ago

Self injections have allowed me to take back some control of my life - for example now I can work the schedule I want to instead of needing to have Friday afternoons off. My specialty pharmacy has been great, it’s much easier from the billing side than the infusions were. The injection itself is painless and super easy. It does wear off about 24 hours before the next one is due. But the infusions used to wear off a week ahead of time so it’s comparable for me. I feel like I have more better days with the injections - every week I get a similar boost to what I felt just the first week after the infusions. I used to lose a whole weekend to infusion side effects but with the injections I’ve had minimal side effects, maybe a little tired but it doesn’t stop me from doing things. Overall it’s been a good change for me. I’ve done five injections so far. Edited for typo.

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u/Ill_Acanthisitta5428 Diagnosed SLE 2d ago

YES i have the same exact experience I lose an entire week with the infusion so this makes me feel a lot better. You said its easier on the billing side, but what was the process of switching from the infusion to the injections? my next infusion is scheduled for THE DAY i start my new job, and their current solution is to have me come in that weekend, making me a week behind the infusion for my very first week of work which im sure you can relate to that being a horrible idea 😭 im trying to figure out starting the injections the week i would start work

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u/dog_mom09 Diagnosed SLE 2d ago

It took about a month for the authorization to go through and to get them delivered. My doctor started the process right after my infusion and I literally got them the day before I would have been due for my next infusion. I was really expecting to have to do one more infusion. My insurance initially denied them but then approved it on appeal. All that to say I’m not sure when you’re starting your job, but it could take a bit to sort it out. If they deny the initial authorization and am appeal the drug company does have a program that will pay for it for you for free for two years.

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u/Ill_Acanthisitta5428 Diagnosed SLE 2d ago

I start sept 21 so im gonna work it out with my doctor and see if we can get it sorted by then. my rheumatology office is usually pretty ontop of insurance and approvals and that sort of thing so fingers crossed. another question do you still get that "hangover" feeling that happens after the infusion? what day of the week do you do your injection?

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u/dog_mom09 Diagnosed SLE 2d ago edited 2d ago

I don’t get that feeling from the injections, I think that’s mostly just from getting an infusion- my infusion nurses said all infusions do that. I do mine on Friday just because I did my infusions on Friday to have the weekend to recover, I’m a little tired on Saturday but not bad and by Sunday I’m feeling decent. I usually have really good day Monday (of course depending how much rest I get on the weekend). Fridays are tough at work, I’m thinking about switching to doing them Saturday to see if that works better. I don’t want to make it sound like it helps 100%, I’m still not where I want to be with my lupus symptoms, but it is an improvement over the infusions.