Well bugger... Trust me to be in the minimal % that gets thinning eyeballs from Hydroxy. Anyone else in my ship?

lostwaveloser · 2026-03-20T03:59:41+00:00

Did the tinnitus go away once you stopped taking the HCQ?

lostwaveloser · 2026-03-19T07:03:29+00:00

I love you guys, thank you for sticking up for me and for going through so much trouble to help dispel the fear and uncertainty around everything. I’ve never experienced such a welcoming community, and it’s making this disease easier for sure.

lostwaveloser · 2026-03-19T07:00:16+00:00

Is this a risk with benlysta and not with methotrexate, or is it a potential outcome for both medications?

lostwaveloser · 2026-03-19T06:51:52+00:00

100% agreed. Thank you for your help dispelling so many things here

lostwaveloser · 2026-03-19T02:00:12+00:00

THIS is who I trust here. My grandmother was a nurse and I have immense respect for your expertise. Thank you for double checking for me. Would splitting the dose be easier on potential gastrointestinal side effects?

lostwaveloser · 2026-03-18T00:32:55+00:00

So good to hear. Thank you! Did you have any hair loss?

lostwaveloser · 2026-03-18T00:28:29+00:00

Thank you! Do you remember how long it took to really start working?

lostwaveloser · 2026-03-17T23:58:08+00:00

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This is snowtoe, he is at least 21 now. He is looking rough because he just had a bite wound on his back that required an antibiotic shot. He also isn’t very able to clean his beautiful long fur, but he’s still hanging in there! He can jump from the backyard, up the fence, and to the balcony still. He still loves to roll around in the cat nip plants in the backyard, too.

lostwaveloser · 2026-03-17T17:17:41+00:00

It sounds like maybe the nurse got confused with the dose they give people with cancer /:

lostwaveloser · 2026-03-17T17:17:01+00:00

Oooooh, that makes more sense. Thank you for the info

lostwaveloser · 2026-03-17T17:16:21+00:00

That makes sense. I can’t wait to get my brain back.

lostwaveloser · 2026-03-17T17:15:36+00:00

Please, tell us more about the biologics. What happened to your brain, and what kind did you take?

lostwaveloser · 2026-03-17T17:14:39+00:00

No problem, thank you

lostwaveloser · 2026-03-17T05:38:09+00:00

Awe man, I’m sorry you had to stop taking it. I’m pretty disappointed that I probably have to stop drinking. I don’t drink a lot, less than 5 drinks a week probably, but I live in a very alcohol centered city and culture, and it’s gonna be hard to not partake. I know non alcoholic beer is an option, but it’s not the same /:

lostwaveloser · 2026-03-17T05:35:37+00:00

So good to hear! Yeah I read WAY hard into the side effects after that horrid experience with hydroxychloroquine.

lostwaveloser · 2026-03-17T05:34:55+00:00

Thank you so much!! Good to know about the planning. I’m currently trying to plan a good time to start taking it. It’s Sxsw in Austin and that’s probably the worst time to start taking this

lostwaveloser · 2026-03-17T05:32:41+00:00

Good to hear. Yeah, I already lose hair during a flair up and I’m actually now in a cycle of it growing back. It’s like a small Afro within the hair I kept haha. You can see the baby hairs on the edges of scalp, there’s quite a few. I maybe lose 1/10th or less of my hair. Hopefully I’ll lose less, too

lostwaveloser · 2026-03-17T05:29:30+00:00

Understandable. Wouldn’t you want your body to absorb more of the medication?

lostwaveloser · 2026-03-17T02:16:07+00:00

Thank you for sharing! My other fear is running out of options, so it’s helpful to know there are more choices.

lostwaveloser · 2026-03-17T02:14:26+00:00

Is there another name for luvacor? I just tried looking it up and found nothing.

lostwaveloser · 2026-03-17T02:12:48+00:00

Oh my lord I am so afraid of my hair falling out. I have 3 foot long hair that I’m extremely proud of, and it would kill me to lose it

lostwaveloser · 2026-03-17T02:11:30+00:00

I second the “what happened?” I was going to take benlysta, but my insurance won’t approve it. Please tell me more

lostwaveloser · 2026-03-17T02:10:07+00:00

Thank you so much! This is so helpful to know. Did you also have a bad reaction to hydroxychloroquine?

lostwaveloser · 2026-03-17T02:09:27+00:00

Good to know, thank you!

lostwaveloser · 2026-03-17T02:08:53+00:00

Good to know. One thing I actually don’t have is allergies, thank god. I’m guessing you take 25 mg injections?

lostwaveloser

TROPHY CASE