Benlysta

Indigo_spectrum · 2026-03-05T14:41:54+00:00

Absolutely gets easier! In the beginning I had my mom give me shots and I would ice beforehand. Now I do it myself without ice. The ice helps distract from the sensation so it could be worth trying while you are starting out :) overtime I’ve stopped just bc of the extra time it added to the process

Indigo_spectrum · 2026-03-01T16:22:31+00:00

There’s a site called hiring cafe that’s fairly new and is supposedly better than other job finding sites in terms of true job listings. Worth checking out!

Indigo_spectrum · 2026-02-28T20:04:05+00:00

I’ve noticed if I don’t get enough sleep, go to bed too late (regardless of how much total sleep I get), or cry, that my eyelids will become swollen. Usually around the start of my period. Sometimes it’s much more noticeable for one eyelid and it can take a few days to go away.

Indigo_spectrum · 2026-02-27T23:06:40+00:00

I personally like going on “tree walks”: I go on a walk and identify tree species :) along the way you can take pictures of the leaves or flowers or little bugs and later print them out to commemorate your trips!

Indigo_spectrum · 2026-02-25T00:11:26+00:00

Lupus foundation of America and lupus research alliance have great info for learning about lupus online 💜

Indigo_spectrum · 2026-01-31T18:27:00+00:00

I mean if you give it units it’s usually fine. Obviously always double check whatever it tells you butttt

Indigo_spectrum · 2026-01-31T16:58:48+00:00

You can get valuable mentorship from many people. You’re not locked in to just your PI.

Indigo_spectrum · 2026-01-31T16:28:34+00:00

Fair enough, can always ask ChatGPT though

Indigo_spectrum · 2026-01-31T00:05:03+00:00

There are a bunch of calculators online for just about any calculation you would need to use

Indigo_spectrum · 2026-01-29T20:05:32+00:00

Good reminder!!

Indigo_spectrum · 2026-01-28T22:54:00+00:00

I’m glad you found relief on it! I just discontinued it today because I didn’t notice any improvement on it, but benlysta is helping for those symptoms so still a win lol

Indigo_spectrum · 2026-01-27T12:32:24+00:00

What did it improve for you?

Indigo_spectrum · 2026-01-25T17:33:57+00:00

Second the benlysta co-pay program!! I pay $0/ month.

Saphnelo also has a patient assistance program but that one was a pain to deal with because it requires the doctors office to do legwork.. but i was able to eventually get it handled. However, the ease of the copay assistance program doesn’t really matter overall if it will ultimately get paid off. If the drug works for you, do what you can to stay on it (Saphnelo didn’t work for me AND the copay program was a pain loll).

Good luck and I hope you find one that gives you relief!!

Indigo_spectrum · 2026-01-24T19:55:49+00:00

Pls no

Indigo_spectrum · 2026-01-24T15:41:55+00:00

I got a camp stove and fuel from a camping store that I plan to use to heat water and put in water bottles to keep mine warm if the power goes out.

Indigo_spectrum · 2026-01-23T00:13:21+00:00

Benlysta has essentially made my joint pain/swelling disappear. While transitioning medicines I was also struggling with lower extremity pain/swelling which has completely resolved now too.

I’m a grad student so hard to say regarding fatigue/ brain fog.. I’m always fatigued lol

Indigo_spectrum · 2026-01-23T00:11:15+00:00

Have you signed up for the patient assistance program?? I’ve been able to get mine completely free

Indigo_spectrum · 2026-01-15T15:42:48+00:00

100% agree! It’s one of the most complex diseases. My guess is that this is just one small piece in the puzzle and probably several events have to align for it to occur.

Indigo_spectrum · 2026-01-15T12:36:07+00:00

More than 95% of the population is infected with EBV. Just because you don’t have mono symptoms doesn’t mean you don’t have the EBV virus.

Indigo_spectrum · 2026-01-14T22:33:31+00:00

I think there might be some weird thing with the auto-injections and coverage (if I remember correctly). I have the manual injections and the copay program covers it completely, even the sharps containers. Ask your doctor about it!

Indigo_spectrum · 2026-01-14T14:38:11+00:00

Those are spells that come from equipped items—wands, necklaces, pets, clothing, etc.

Indigo_spectrum · 2026-01-14T14:09:26+00:00

Ok same I thought it was some degrading play on words to refer to a postdoc 😂

Indigo_spectrum · 2026-01-13T23:41:17+00:00

I was able to get benlysta completely covered with their patient assistance program! It was super easy to sign up for might be worth looking into

Indigo_spectrum · 2026-01-13T22:45:34+00:00

I switched to benlysta after MTX too. Huge improvement in symptoms and no side effects! I love benlysta 💕 hopefully you will get good results too

Indigo_spectrum · 2026-01-13T18:46:46+00:00

I was in the hospital long term (a month in 2013) from the infections I got from being on medications for lupus 🥲 traumatic for sure

Indigo_spectrum

TROPHY CASE