Hydroxychloroquine side effects

@tisme be careful with Meloxicam. It’s a NSAID and can damage kindeys. Up to 3000 mg Tylenol may work for you.
There always a trade off unfortunately

this drug seems to me to be attached politically. it's hard to get what you need. I would like to use it. how many mgs are you taking for 20 years?

@cptrayes Yes, I’m in the US. Here you have the eye exam the first year you start it, year 5, and then annually after that (or at least that’s what they do at Mayo, where I’m seen). Though I feel like that changed between when I started my meds and when I clarified this fall..? I seem to remember during the medication education appointment that it was every 3yrs, but that was in 2022. Could be they updated the standard recently or I was just getting incomplete info that was nonspecific to my case/circumstances.
I suppose my age could also factor in - I was quite young at the time of diagnosis (34), so it could be the age of my eyes, liver, kidneys, etc and ability to metabolize meds may impact the initial frequency of the eye tests.
It’s always interesting to hear how standards of care differ from one country to another!

@naturalcranberry interesting I am supposed to have an eye exam every year but I have dry macular degeneration.

@naturalcranberry I wouldn't be happy with that schedule of eye exams. If my memory serves me right, 1 in 13 people will have retinopathy at 5 years. If they are only being tested at 5 years, then some of those people could have been saved further eye damage at 2,3,4 years.

@cptrayes Well, I’m sorry to hear that you’re unhappy with the care that I’m receiving. I, however, am incredibly happy with my care team and the balance we’ve struck between meeting my health/family planning goals and choosing medication to manage RA symptoms.

My care team has been extraordinarily mindful about treatment and monitoring for a variety of reasons, not least of which is that I have been ttc, pregnant, or breastfeeding for my entire treatment course.

I do sincerely hope that concerns over retinal toxicity don’t deter folks desiring to grow their families from at least trialing HCQ to see if it works for them - it’s one of the few DMARDs that’s considered safe for pregnancy and breastfeeding due to low/virtually no transfer of the meds across the placenta or into breastmilk. It’s also been great since it’s an immune modifier and not a suppressant, given I’m constantly exposed to childhood illnesses.

I’m sorry to hear so many folks have had retinal issues as a result of HCQ, but it is my understanding it’s considered a rare side effect in folks under 60 without other risk factors regarding kidney and liver function.

I’m sure I won’t be on it forever, but it’s been great for now! I also know quite a few other folks my age that have been on it during childbearing years and done well (including having successful pregnancies).

@bswpb It certainly seems like many rheumatologists base the frequency of exams on a variety of factors in your health history! I’m glad to hear the approach is individualized to so many folks.

I have post traumatic vision syndrome after a concussion, but no macular degeneration or family history of it (and I’m 38), so following the general standard makes a lot of sense for me given my circumstances.