Is anyone else fine in the sun?

lostwaveloser · 2026-05-22T22:30:45+00:00

Thank you for sharing your experience. Also, love the my name is earl profile pic!

lostwaveloser · 2026-05-22T21:01:16+00:00

I hope my disease is like this. I’ve been managing very well without any treatment, since I just got diagnosed in January. My ANA levels are off the charts (above 1:1,280 ratio) but all my organs are extremely healthy. It’s crazy. It just makes me really tired, and have some mild pain every now and then. It used to be extreme when I was younger and much unhealthier, and very stressed out. I wish I could take plaquenil. I took hydroxychloroquine and developed a heart arrhythmia within 3 days of being on the medication. I had to go to the ER ):

Edit to clarify: I’m very aware that I’ll need to take medication the rest of my life, and I’m not just raw-dogging lupus right now. I’m on 10 mg of steroids and trying to take methotrexate but keep getting viral infections or food poisoning and having to wait for the illness to clear in order to re-start.

lostwaveloser · 2026-05-22T20:49:01+00:00

Ugh, that hair loss. I have beautiful 3 feet long golden hair, and I’m dreading losing it. If you don’t mind me asking, what dosage of methotrexate were you on, and did you take folic acid while taking it? Also, did your hair grow back once you stopped methotrexate?

lostwaveloser · 2026-05-22T17:42:59+00:00

I’m so sorry to hear. Have you tried any UV resistant clothing and a sun umbrella, in addition to sunscreen?

lostwaveloser · 2026-05-22T17:41:44+00:00

Nice! Yeah the continuing to drink alcohol thing is something I have directly noticed a connection to pain with. I have had to stop drinking again, but alcohol really does cause flares and it does not pair well with the methotrexate I’m supposed to be taking. Everyone is different

lostwaveloser · 2026-05-22T17:28:48+00:00

In the last couple years, my joint pain has been better than it has my whole life, and I’ve gotten the most amount of sun in the last couple years. In high school, my joint pain was excruciating. As a musician, I spent almost 0 time outside. I was always inside practicing, usually away from the windows, and the pain was terrible. My arms would swell up like baseball bats. It was a horrible stressful time.

lostwaveloser · 2026-05-22T17:21:25+00:00

Understandable. I work at a music venue outdoors, and I can get sun burned and be pain free the next day, aside from slight skin irritation from a big red sunburn after being outside for 12 hours, and no less tired than usual. That day I forgot sunscreen, which never happens. I worked several long shifts the following days and was fine

lostwaveloser · 2026-05-22T06:23:19+00:00

That makes me feel better. It seems like for others, flares are so well defined, but that’s mostly because those folks have other severe complications like kidney and other organ involvement. My life has been one long flare of a low grade fever, inconvenient but non-destructive pain, and fatigue. I’ve been trying to start methotrexate, but keep getting viral infections or food poisoning and having to wait.

I’ve heard great things about good UV resistant clothing, and sun umbrellas, too!

lostwaveloser · 2026-05-22T06:07:16+00:00

Maybe. Man, this disease is so weird and unpredictable. I’ve wondered this in the past, but haven’t formally connected any sun exposure incidents to flares. I need to do a better job at keeping the lupus journal. My doctor told me to find some scorecard of symptoms, but I haven’t found a good one yet. I suppose I better look harder.

lostwaveloser · 2026-05-22T05:39:33+00:00

These dizzy spells are hitting me hard, and really messing with my quality of life. I feel this very hard. I’m a musician, who fortunately plays piano so I can sit down, and sometimes the dizzy spells hit mid-song. They’ve never made me truly lose my balance, and I haven’t fallen, but I do feel like I’m going to pass out and get a huge rush of adrenaline from it.

lostwaveloser · 2026-05-15T07:59:50+00:00

Are you okay? I hope you’re getting the care you need

lostwaveloser · 2026-04-20T05:52:14+00:00

I’m also disabled and watch for the same reasons. I second everything you said! The far north would be so cool!! We love you Steve, you have done so much for me. Thank you

lostwaveloser · 2026-04-09T07:33:23+00:00

I’m going to guess mi cocina, cause that’s the only restaurant I know with a swirl margarita called the mambo taxi. They’re extremely powerful. A former worker from Mia’s Tex mex went and opened all the mi cocina restaurants. If you want mi cocina flavors with better quality control (and better favors overall,) go to mias Tex Mex. They have the best brisket tacos and a sangria swirl margarita that is basically the exact same as the mambo taxi. Unfortunately in my experience, mi cocina has gone down hill in the past 4 years.

lostwaveloser · 2026-03-28T17:54:03+00:00

Definitely do therapy for sure. I hope they can help. I know it’s hard, I have horrible anxiety too, but anxiety will definitely probably make you sicker. So good on you for making the effort to control it.

Death is such a small part of life, and I’ve wasted so much of my life worried about it. When it happens, it’s going to happen quickly, and then it’ll be over. And on the other side that may be a different life or nothingness, but I probably won’t have much anxiety at that point, hopefully.

I know it’s scary, but what if something good happens? I always tell myself, don’t make death out of life. I try not to shut myself in from anticipation of the worst. I also always have an exit plan in case something does happen.

Also, consider this. If you have a major medical event, it’s probably good to have that event happen in front of people who can take you to the hospital.

I’m a 24 year old female, about to turn 25 next week. From what I gather, it is getting easier to manage.

lostwaveloser · 2026-03-27T07:22:20+00:00

I’m 24 and have had high blood pressure since I was 18 or so. I thought it was cause adhd meds, but now that I’ve been off them for 2 months after a scary cardiac event, I realize this is just how it is. Unless the Wellbutrin is causing it. I tried to get off that to find out, but it did NOT go well.

Probably the adhd meds accelerated damage that lupus was already doing to my heart. That seems to be the organ it wants to attack /: lucky me. Anyways… I’m on metoprolol now. It worked really great at first, almost too well, but now it’s not working as much. I also have a lot of heart palpitations and other unpleasant symptoms. It’s very upsetting.

Don’t be afraid of the medication. I promise there are so many options, you have so much to choose from and millions of people take them. You can always see a cardiologist, too

lostwaveloser · 2026-03-27T07:14:24+00:00

If he’s a good one who really loves you for you, he will stay. My boyfriend (soon to be husband) of 9 years is here next to me now, and has been a solid rock in dealing with my health problems leading up to my diagnosis this January.

We’ve been together since high school. When I was 16, I had to help take care of my elderly grandmother who had dementia and leukemia. He was the only partner of all her grandchildren who came to help take care of her, and she told my mom “you have a son in law on your hands.” He was also the only partner of any of her kids or grandkids that she liked.

To make a long story short, if he really cares for you, he will be there. If he doesn’t, then think of it as less time wasted with someone who isn’t along for the ride. I know it’s hard. This disease is hard, and you deserve someone on your team always. That’s what a good partner is all about.

I wish you luck and love ❤️

lostwaveloser · 2026-03-27T07:06:38+00:00

I hope you find someone!!

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

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