u/Own-Example7079

I have recently been diagnosed and just started on hydroxychloroquine + prednisone (200mg and 15mg pred). Based on my labs and symptoms, I think I seem to fall into the moderate disease activity range. I have been experiencing symptoms for the last 8 months

- labs over the last few months (High >300 dsDNA, very low complements, low WBC, leukopenia)

- symptoms (rashes, hair loss (80%), chest/rib pains (which were currently investigating with echo, ecg, cardiac mri), joint pain (which isn't completely controlled prednisone I'm still experiencing minor aches), fatigue, brain fog/cognitive slowness, memory, word recall etc, petechiae, tingling/pins/needles)

My rheumatologist wants to give the HCQ+pred combo 3 months to see how I respond before considering adding an immunosuppressant (like MMF or methotrexate). She's also referring me to a colleague for a second opinion, but I won't get that appointment for another 3 weeks.

I've been reading up on treat-to-target approaches and hearing from some webinars that earlier combination therapy (adding an immunosuppressant sooner rather than waiting) can help control disease faster, reduce organ damage risk, and shorten prednisone duration. That's making me second-guess the "wait and see" plan and raising my concern and anxiety levels...

For those of you who've been through something similar:

• Did your team wait on HCQ alone first, or start immunosuppressants earlier?
• If you waited, how did that go — did you end up needing to escalate anyway?
• If you started immunosuppressants early, do you feel it made a difference in your long-term course?
• Any questions I should make sure to ask at my second opinion appointment?
• since this is a progressive disease wouldnt we want an immunosuppressants to be started earlier to control the disease activity?

Thank you all!

edited a few points here.

Im newly diagnosed, and cant help but anticipate the future... from the research ive done it seems to take some time to get your lupus under control. How did you maintain employment while still searching for a treatment that works?

I keep seeing posts about people going through 6-9 medications over several years before finding something that controls their lupus. that's years of unpredictable flares, fatigue, side effects, and appointments all while trying to hold down a job??

I'm currently on prednisone + hydroxychloroquine and on medical leave while we figure things out. I'm genuinely struggling to understand how people navigate this long-term with a job?

Did you take extended leave? Go part-time? Change careers entirely? get accomodations?

Im trying to do some research before my new rheum appt - I was recently diagnosed and I think there is a good chance they'll recommend adding an immunosuppressive.

How do I know which immunosuppresives are better/better fit than others? Ive seen that methotraxate makes a lot of people nauseous...

Did you just take the prescribed immunosup medication? or did you propose one that you thought may be better for you?

I have recently been diagnosed and started on HCQ and prednisone during the bridge period (10mg) and then we would taper off slowly once the HCQ starting taking affect.

Its been 11 nights on 10mg prednisone and ive slept 2 nights... but I dont feel tired during the day, im WIRED.

its getting to the point where I am genuinely worried Im going to lose my mind or have a severe flare up from lack of sleep...

The two nights I slept it was because I took some thc oil. I have tried taking prednisone at 4 am, 5am, 7am, to see what would work best... the timing does not seem to make a difference.

I dont drink any caffeine throughout the way, I still get adequate exercise by walking... hydrating plenty. I have tried meditation, yoga nidra, basic sleep hygiene, no screen time before bed, reading, magnesium, melatonin, l theanine, sleepy tea... Im at a loss...

Im newly diagnosed and my doctor had me start HCQ and 10mg prednisone. The prednisone was as a bridge for a month and then we will assess how the HCQ is going... and start to slowly taper. Whats typical for a prednisone taper? and curious how you guys have reacted to it?

I have been diagnosed this week and I dont now here to turn... I am really struggling mentally with accepting this. I feel like my whole life has been turned up side down and there is so much to read up on and understand... Are there any resources you suggest that could be helpful for someone newly diagnosed? Lifestyle, mental health etc? Thank you!