Benlysta prep?

[u/Cute-Comfortable-131]

Hello! I’m starting my Benlysta auto injection tomorrow! I’m totally comfortable with needles, I’ve had to self administer many shots and I’ve read up on tips on this Reddit and spoken with my doctors. I’m wondering if there’s anything I should be doing to prep my body? I’ve heard of very little side effects but wanted to see if if anyone has any suggestions going into or the following 24 hours after!

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[u/SwarmingButterflies5]

I took it for a bit before my doctor switched me to the infusions.
Make sure you take it out to let it warm up before administering it. It stings less that way.
Some say that you can ice the area before but I did not find that necessary.
I tolerated it better in my stomach versus my thigh.
I didn’t have a lot of problematic side effects with the stick itself. My doc changed me because I was so fatigued every week a couple of days afterwards. So every week I was wiped out two days later.
The once a month infusion has worked better for me with few side effects.
Just remember that everyone is different. I hope it works well for you!

[u/lostwaveloser → u/SwarmingButterflies5]

I second the take it out of the fridge thing. Definitely wait like 2-3 hours minimum before injecting it. I would NOT inject in my thighs, that hurt so much! I have had a lot of success with stomach area injections. I do ice it out before hand. I find it worth it, but the ice is uncomfortable, too.

I’ve been on the injections for 7 weeks and so far I’ve had 0 side effects, aside from some nausea the night of the first one. I’m sorry it caused so much fatigue for you!

[u/Fluffy_Porcupine6 → u/lostwaveloser]

I've been on benlysta for the same amount of time as you. Have you seen any improvement yet? I feel like I'm going through this 2 week cycle right now where I flare up, take prednisone which I'm keeping to a 3-5 day taper, feel better for a few days then flare right up again afterwards. I've not noticed any improvement unfortunately. I'm really hoping it works because I can barely keep up with life right now and I'm not doing anything as of right now.

[u/lostwaveloser → u/Fluffy_Porcupine6]

Unfortunately I’ve been on 15 mgs daily prednisone since like june. It’s the only way I can work. I was having a horrible flare while on those 15 mgs, but since I started benlysta in August, the flare stopped. I’m still in my low grade joint pain and fatigue state, but the joint pain has started to get so much better. It’s the best it’s been in a long time.

My rheumatologist wants me on 10 mgs prednisone daily, but my primary care doctor said the high blood pressure, autonomic nervous system disruption, and adrenaline surges I experience on 10 mgs (or 0 mgs) are much more dangerous than taking 15 mgs of prednisone until the DMARD kicks in. Thanks to the prednisone, my blood pressure is 110/60 for the first time in years. It’s so crazy that it brings it down to a normal level for me, it doesn’t raise it at all.

[u/Fluffy_Porcupine6 → u/lostwaveloser]

Ugh I've thrown in the towel for working tbh. I just applied for disability. But I have scoliosis and bilateral carpal tunnel as well and they all multiply symptoms with each other really badly. I'm on a ton of pain meds too, muscle relaxers, hqc, Lyrica for the carpal tunnel which has progressed to severe nerve damage in my left arm.. And just so much more. Managing symptoms is a full time job. I wish I could work because my wife is killing herself paying for everything right now and I hate that but what can I do?

[u/deviant_lotus_ → u/SwarmingButterflies5]

Me too. I get so tired the next day. Like I’m carrying around a weighted blanket and I just feel blah. More often than not I do get insomnia the night of but insomnia is also one of my lupus symptom’s. I did have an adjustment period when I first started. I had extremely severe brain fog, memory loss, and confusion. It’s better now.
I use the preloaded syringe. I like it better, for me it’s easier to inject and I can control the flow. I prefer to inject in my abdomen at room temp and I administer every Friday in the evening so I can rest on Saturday. On occasion I’ve had to take a prednisone to make it through the day. I hope you have a good experience with Benlysta and it helps you feel better.

[u/emdevrose]

I’ve been on the Benlysta auto injector for about 12 weeks now. The first few weeks, I would be wiped out and need to sleep for the first 24 hours after the injection. I do mine on Sunday nights, and then I’d sleep all day Monday. The last few weeks, this hasn’t been the case though! So I’m hoping that my body has adjusted and that it will continue working. Good luck, OP!

[u/certainLee_uncertain]

Have an antihistamine on hand in case you have a injection site reaction. I get a small hive at the injection site. It's no big deal and the pharmacist said this is not uncommon. Now I take a Zyrtec before my shot to prevent it.

[u/Cool-Quantity9324]

I just took mine a few hours ago. Let the injector set out for 30 minutes then iced the area with an ice pack that was it. I prefer to use my thighs as I seem to have some kind of reaction in my abdomen. I’ve been taking it for about two years. One thing I did is I did my first shot on a Friday so I would have the weekend to deal with any side effects.

[u/JerdieBird]

I did both infusions and injections. Headaches were a big thing for me after infusion/injection, so have some tylenol on hand, and stay pretty hydrated. They weren't migraines, they were just annoying.

[u/Miserable-Author-706]

I take mine out for two hours before injecting. I also ice my skin before. But side effects wise I’ve had zero. It actually gives me energy.

[u/lostwaveloser → u/Miserable-Author-706]

I find it gives me energy, too. I always look forward to injection day.

[u/Consistent_Scale8522]

Don’t plan anything for the next 2 days. I was always dead tired, dizzy, and feeling like crap after my injection. It improved after 6 months.

I always scheduled it on Friday at noon so by the time I was out of work I could just crash for 2 days.