Realistic expectations 6mo into treatment. Help!
Firstly, I know everyone is different. But please chime in where you can.
I was diagnosed with UCTD (and told, “your symptoms are identical to Lupus, but there are specific criteria, and I can’t diagnose you with Lupus right now because you don’t meet them.” The main reason being a good one — my organ function is fine!) in December 2025.
Been on HCQ just under 6mo now. Added Sulfasalazine mid January, and have been on maximum dose for 2.5mo.
Reacted poorly to steroids, Meloxicam didn’t help me (was still in pain from writing and typing at work while on, so he ruled it out). Using Tylenol and 1% topical Voltaren right now.
Noticed cognitive improvement after 3.5 mo on HCQ. Fatigue is kind of better now, too, but still a major issue.
Still in pain that disrupts sleep, makes it nearly impossible to complete & maintain household tasks, and I cannot work more than about 20hrs/week without having a major flareup and crash out.
Venting/BG you could probably skip:
Even those 20 hours are brutal, and I used to be able to work OT without batting an eye. Historically, I’m a super active and driven and disciplined person; now I feel like a shell. Took me about a year to get diagnosed, but symptoms worsened over 3 years before becoming nearly debilitating. That last year was when it was so bad I had to seek help.
I’m 24. I carried a heavy box of dishes 3 days ago and have been in severe pain since. I can’t play instruments anymore without struggling to work the next day, often I physically can’t play at all.
Again, I’m in so much pain I wake up often or simply can’t fall asleep, and then everything snowballs.
I know all of these meds take a long time to work. I’m discouraged and worried.
TLDR:
- Been on max dose Hydroxychloroquine for 6 months, Sulfasalazine for 4 (full dose for 2.5) months. Voltaren & Tylenol.
Struggling with daily life and can work 20hrs/week max (with difficulty) and am in near-constant severe pain.
How long did it take for you to see improvements?
What should I expect?
Do I need to advocate for reassessing my treatment plan (my next appt isn’t for almost 4 months)?
If this is normal and you’ve seen great results with more time, okay. Helps me to hear that, too!
But if I need to course-correct, I want to ASAP. Even like…should I ask about Celebrex, etc.?
I am having to manage all these health details completely alone. It’s a lot to figure out when I’m already struggling to function/make ends meet.
Insight deeply appreciated!