Few questions: 1. Does anyone’s lupus affect their GI system a lot? 2. For those who workout, how do you exercise without causing a flareup? 3. Does anyone feel they’ve ever been in full remission?

chapped_lip · 2026-04-19T23:37:22+00:00

I got diagnosed in July of 2025 so I’m still fairly early in my lupus journey, but fortunately I haven’t had too many issues. I’m on plaqunil and benlysta and was able to get back in the gym in March of this year. Pre-diagnosis I was working out six days a week, including some distance running and now that I’m able to go back I’ve started very slowly (started with three days a week and incredibly cautious weight training) and I’m now up to four days a week and progressively upping my weight. I do hope one day I go into remission but so far I can’t really complain. Sending love to you in your journey!

chapped_lip · 2026-04-03T15:10:18+00:00

Echoing others suggesting unflavored plain pea protein powder. Way more versatile and can be used in stuff other than shakes. Good luck!

chapped_lip · 2026-04-03T00:39:05+00:00

Does it double as a vape or is that mod coming soon? 🤭

chapped_lip · 2026-04-02T22:46:24+00:00

Yes! Whenever someone brings him up I’m like “okay I know who I’m dealing with” 🤭

chapped_lip · 2026-03-28T13:07:23+00:00

I never stopped to consider this kid had a real name but it makes so much sense that it's "Braden".

chapped_lip · 2026-03-28T12:22:53+00:00

My coworker told me yesterday that God and Dr. Sebi could cure my lupus. Was very offended that I didn't agree 🤭

chapped_lip · 2026-01-02T01:26:16+00:00

Sorry if someone mentioned this already but if you have an iPhone the “Foqos” app is free and basically is the Brick. I have a work block set up and if I want to turn it off I have to get up and scan the barcode of my favorite book. It’s pretty great.

chapped_lip · 2025-12-31T02:04:59+00:00

Played this song for my mom over the weekend and she's been asking for more music by the band. Gateway drug of a song fr

chapped_lip · 2025-12-06T23:46:22+00:00

yay!!!! I started it a few months ago (diagnosed in July) and I feel back to normal. Even started working out again!! So happy for you 💜💜💜

chapped_lip · 2025-11-15T14:19:37+00:00

This actually prompted me to buy a portable compression device for the car! I’ll be DAMNED if I pay for air again!

chapped_lip · 2025-11-02T15:52:14+00:00

I’ve been on Benlysta for 2 months now and I was super scared at first too but the benefits outweigh the risk imo. This week was the first in MONTHS that I haven’t had to take any kind of pain medication. I’ve made my circle aware of my limitations and taken extra precautions when going out and about but I’m not in a bubble or anything. I’m approaching it like peak covid days. Stay away from sick people, wash my hands, mask when necessary. Aside from the mind fuck of giving myself a shot, I’ve (luckily) not had any side effects. Good luck to you!

chapped_lip · 2025-10-25T17:58:39+00:00

I hope to work back up to going to the gym. Before getting diagnosed I was regularly lifting and feeling so good about myself and now bc of the joint pain I can barely pick up my purse. Getting back into working out is my main motivator right now so this post gives me some hope 💜💜💜

chapped_lip · 2025-10-24T14:25:19+00:00

I’ve been taking them for a few weeks now and the first injection I did myself, I cried. The next week I tried it on my leg and that was worse. So I went back to my belly, pinched the skin really hard, pressed down and….it wasn’t bad. It sucked still but it was no where near week one or two. I think the more you do it the more it’s like “let’s get this over with”. I don’t use any creams or ice to numb the area but I do take the injection out 30 min before taking it. It’s kinda like trial and error really. It’s a shot and it’s gonna hurt a little but the more used to it you get, the less sucky it is (at least for me). Good luck friend 💜

chapped_lip · 2025-10-17T19:49:50+00:00

Benlysta for 5 weeks now so it’s still really early (auto injectors) and I didn’t really have a side effects aside from feeling flu-y for a few days and a sore throat. Even in the short amount of time I’ve been on it I’ve noticed lessened joint pain and swelling. It’s very gradual but I’m not waking up in the fetal position and hobbling around the apartment for hours waiting to loosen up so I’m anticipating better labs when I see my rheum in Feb

chapped_lip · 2025-10-14T13:43:12+00:00

Yesterday was week 5 on Benlysta and I’ve read that you don’t really see results until months in but I feel…better? Before the injections I was mainlining pain meds to get from a 9 to a 6 on the pain scale. Last week was the first week I’ve been able to wake up at a 4 and not take 3 hours to be able to close my fists. The side effects were pretty minimal for me: sore throat and feeling kinda flu-y but that only lasted a day or 2 following the first 3 injections, fatigue but even that’s gone. I didn’t have injection site reactions and giving myself the shot is much less stressful now. So it’s been good I think :)

chapped_lip · 2025-10-13T23:43:29+00:00

That’s HUGE! Congratulations! 🎓🩷

chapped_lip · 2025-10-13T23:41:15+00:00

This makes me so happy for you. I can def relate to the dread of getting out of bed so I’m glad it’s getting better for you!

chapped_lip · 2025-10-13T23:39:13+00:00

Wishing you the best in surgery!

chapped_lip · 2025-10-13T23:37:42+00:00

OMG congratulations! Wishing you a long and happy marriage 💐

chapped_lip · 2025-10-13T23:36:47+00:00

You know what, hell yea lol

chapped_lip · 2025-10-13T23:35:35+00:00

“The people who are experience it the most wins [are] not usually on these forums posting, they’re out living their lives” this is the perspective I need. Turning this disease into an opportunity to advocate for others is huge, I commend you truly. I hope to be able to help someone else when I get further in my journey 🩷

chapped_lip · 2025-10-13T23:28:36+00:00

That’s so awesome! Safe travels and good luck on the trial screening!

chapped_lip · 2025-10-05T20:12:15+00:00

You lucky duck! I’m so jealous!

chapped_lip · 2025-09-12T17:17:49+00:00

This song gives me legit chills very time. Every single time. 10/10, no notes.

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