I (29 M) received a DILE diagnosis in July and I suspected my hydrochlorothiazide was the likely culprit. A little over two months since stopping, I've been feeling much better, with my fatigue levels dramatically improving and my shortness of breath also fading, coinciding with presumptive continued iron level improvement (I was iron deficient, as well).

However, I am still experiencing joint stiffness/pain and generalized fatigue. While body hair loss has since subsided, I am still seeing hair loss throughout my scalp, which has also created a receding hairline (and men in my family do not bald at my age). My follow-up AHA test this week showed a slight increase in concentration, though I am aware these antibodies can take some time to get flushed out.

Although the HCT was likely the cause of my DILE, given the improvement in my overall health, I can't say I know for sure that it was and was hoping the updated AHA would indicate a decline. Medicines I have been taking since August 2022 (when I first began taking the HCT) include amlodipine, telmisartan, and nebivolol for hypertension, and I take rosuvastatin for atherosclerotic buildup we found in my thoracic aorta from an unknown cause. I also take pantoprazole and famotidine for GERD, amphetamine for ADHD, and escitalopram and bupropion for generalized anxiety. I take additional medications for asthma and allergies, as well (I call myself a walking CVS lol).

I have a few questions for folks who have gone through the DILE recovery process and would greatly appreciate any advice you can offer:

1. How long did it take, post-cessation of your DILE culprit medication(s), for all your symptoms to recede or dissipate entirely? Is it normal for symptoms like my arthralgia and hair loss to persist at this stage?

2. What DILE/lupus symptoms do you still have, if any, and how do they compare to when they were at their worst?

3. When did you first see a notable decrease in AHA? Should I have seen one by now if I eliminated the correct medication?

4. For those who also experienced DILE-related hair loss, did it improve or stop? If so, when? If not, did any remedies work to regain hair loss? I've started taking biotin and using minoxidil.

5. Should I be pursuing additional PT for my joint issues? I've already had it twice on my shoulders and neck, to no avail, and for a finger injury I incurred but didn't heal as well as I'd like (I still have joint stiffness in the PIP joint I hurt).