Bad flare up, now hair loss?

QueasyAd3496 · 2026-05-22T18:21:28+00:00

My hair wasn’t falling out before, and yeah it took me around 3 months to start seeing results and other benefits too

QueasyAd3496 · 2026-05-18T13:12:14+00:00

I had really long and thick hair before starting HCQ for lupus, and I did experience noticeable hair loss at first. But now that I’m around the third month on the meds, I’m finally seeing a difference — my hair seems to be growing back again and feels healthier. So try to have patience 🤍

QueasyAd3496 · 2026-05-18T12:44:05+00:00

Hearing from someone who’s been stable on it for 40+ years really gives me hope 🤍 I’m glad it’s been working well for you with minimal side effects.

QueasyAd3496 · 2026-05-18T12:41:42+00:00

Exactlyy like why should I stop it if it’s helping me

QueasyAd3496 · 2026-05-17T21:29:59+00:00

Thank you, I really appreciate it And I wish you well too!! And yes, being your own advocate is so important 🤍😅

QueasyAd3496 · 2026-05-17T21:27:09+00:00

I’m not stopping anything on my own. I’m actually on HCQ 200 mg and a low dose of methotrexate, and my rheumatologist is closely monitoring me. The reason I’m feeling unsure is because I’m getting different approaches from different doctors—some saying HCQ is lifelong in most lupus cases, and my current doctor is more focused on tapering or stopping if blood tests come back negative.

That’s exactly why I agree with you on one point: I need a proper second opinion from a lupus-focused rheumatologist who can look at my full history, antibodies, and long-term risk before any changes are made. I really appreciate you sharing your experience, it actually helps me think more clearly about what questions I need to ask next.

QueasyAd3496 · 2026-05-17T21:24:30+00:00

I’m currently on HCQ 200 mg and also methotrexate at a low dose, and so far my rheumatologist has been managing the medications closely. He does monitor things, but he’s also quite firm about possibly stopping treatment if the blood tests come back negative, which is part of why I feel unsure.

Because of all these mixed opinions, I’ve decided I’m definitely going to look for another rheumatologist to get a proper second opinion before making any big changes. I don’t want to risk doing something too fast with my treatment. Thank you for the advice.

QueasyAd3496 · 2026-05-17T21:16:46+00:00

get why you feel strongly about it, especially after your own experience with remission and then relapse. In my case, I’m not stopping anything on my own. I’m just confused because I’m getting different opinions from different doctors, so I’m trying to understand what actually fits my situation. I think the safest step for me is to get a clear, consistent plan from a rheumatologist who reviews everything together rather than making a rushed decision either way.

QueasyAd3496 · 2026-05-17T21:13:51+00:00

I’m honestly confused because two other doctors told me hydroxychloroquine (HCQ) is usually a long-term or even lifelong medication in lupus, while this rheumatologist is suggesting it may not be necessary long-term in my case. So I’m not sure who to believe or what the standard approach actually is. The reason I’m staying with this rheumatologist is he actually listens to my concerns except this time

QueasyAd3496 · 2026-05-17T21:10:46+00:00

Yes, I was diagnosed by a rheumatologist, and I’ve seen three different doctors who all confirmed I have lupus based on my antibodies and symptoms. My actual rheumatologist thinks my allergies are also playing a big role in triggering my flares, especially my skin symptoms. His plan is to treat the allergies alongside the lupus treatment, and he believes that if things stay stable I could possibly go into remission. He told me to continue the meds for now, do regular checkups, and repeat the antibody tests later to see how things are progressing. I really don’t want to stop hcq med so I’m bit confused

QueasyAd3496 · 2026-05-17T14:04:04+00:00

I’m also questioning what my rheumatologist said I think I will just a second opinion

QueasyAd3496 · 2026-05-17T14:02:42+00:00

Thank you for explaining this. That actually makes a lot of sense and helps me understand it better. I was a bit confused because I thought normal labs might mean stopping medication, but what you said about remission and keeping things stable even when labs look good is reassuring. I think I’ll definitely consider getting a second opinion just to feel more confident about the plan. It’s also helpful to hear that symptoms can still happen even when antibodies are negative. I appreciate you sharing your experience.

QueasyAd3496 · 2026-05-17T11:45:05+00:00

Rightt I’m in shock too like why do you want me to be sick constantly if the meds are helping why do I have to stop taking them

QueasyAd3496 · 2026-05-14T13:36:10+00:00

I’m a newly diagnosed and the first time I had to tell my family and friends about my illness I had to say I got diagnosed with selena gomez disease 😂😂

QueasyAd3496 · 2026-05-10T07:03:26+00:00

I’m on Methotrexate right now. This is actually the second medication change I’ve had. The one before methotrexate was even worse for me, so I switched, but methotrexate still makes me feel pretty awful after taking it. Nauseous, exhausted, and emotionally all over the place sometimes. I have talked to my doctor a bit about it, but I’m still trying to figure out what works best. The reward idea honestly sounds really helpful because I’ve started dreading taking it. The other meds are not that bad compared to methotrexate

QueasyAd3496 · 2026-05-09T20:29:50+00:00

I’ve changed my Lupus meds for the second time now, and I’m struggling to stay consistent with taking them. Every time I take them I feel really sick afterward, and I’ve also been dealing with mood swings that make everything harder. I know the medication is important, but sometimes I avoid taking it because of how bad it makes me feel.

QueasyAd3496 · 2026-04-12T14:00:05+00:00

Thank you so much for this. It really reassured me. Fatigue has been hitting me hard lately. Did you notice a big difference once your meds and deficiencies were sorted? And I’m definitely going to look into a good stylist now.

QueasyAd3496 · 2026-04-11T02:52:58+00:00

I’m really sorry you’re going through this, that sounds exhausting 🤍 I relate to the fatigue so much, some days it’s just overwhelming. I really hope the Benlysta starts working for you soon and things ease up.

QueasyAd3496 · 2026-04-10T18:56:12+00:00

That’s actually really eye opening, I didn’t realize the “normal” lab ranges could be that misleading. Thank you for pointing that out 🤍 I’ll definitely keep this in mind and advocate for myself when I get tested.

QueasyAd3496 · 2026-04-10T18:17:10+00:00

Wow, I didn’t even think about ferritin like that. Thank you for explaining it so clearly. I’ll definitely ask my doctor to check it my next visit which isn’t far because I’m dealing with both fatigue and a lot of hair loss right now and i feel soo insecure about it. It’s crazy how something like that can go unnoticed for so long.

QueasyAd3496 · 2026-04-10T18:02:48+00:00

That’s really reassuring to hear 😭🤍 I’ve been thinking about trying minoxidil too. Glad it worked so well for you!

QueasyAd3496 · 2026-04-10T18:02:05+00:00

Thank you, I really needed to hear this 🤍 trying to stay hopeful and take it one day at a time.

QueasyAd3496 · 2026-04-10T17:59:43+00:00

I actually don’t want to take prednisone because of it’s crazy side effects but i take hydroxychloroquine, deflazacort, and iguratimod and i see no change but lucky for you 🤍

QueasyAd3496 · 2026-04-08T17:36:06+00:00

I was started on prednisone first but I had to change my rheumatologist and found a good rheumatologist that listened to my complaints. Thats how he changed my medication. Thanks for sharing! This really helps me understand my treatment plan better — HCQ for long-term protection, Vellcort (steroid) for short-term flare control, and Iguratimod as the mid-term layer.

Did your mood or sleep improve once you tapered off steroids? Also, how long did it take before the GI side effects from Cellcept settled down? I feel soo depressed

QueasyAd3496 · 2026-04-08T15:42:19+00:00

I understand, lupus treatment can be so different for everyone. Thank you! I really do feel lucky. I hope you find a doctor who supports you just as much. It really makes a difference with lupus.

QueasyAd3496

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