Connect with others who understand.

  •   Learn from expert-reviewed resources
  •   Real advice from people who’ve been there
  •   People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyLupusTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyLupusTeam Member asked a question 💭
Side Lake, MN
May 3, 2024
 · 
Be the first to react
A MyLupusTeam Member

Kellie, don't worry about possible side effects. Docs are aware of possible side effects of medications, but prescribe you the best medications that will help you taking into account other illnesses you have and other medications that you take. Yes, retinal damage can occur as a rare side effect of plaquenil. It's the possibility of such damage that rheumies strongly encourage you to have your eyes checked every year; I certainly do. Early detection (thus the annual eye check) is key in detecting any retinal changes. If detected, plaquenil is stopped. The only way for serious damage, including vision loss, to occur is for someone to spend years on plaquenil without ever getting their eyes checked. As for seeing a cardiologist, I've not heard any such thing. From what I've read in the literature, cardiac toxicity is still debated. I was diagnosed with SLE 12 years go and put on plaquenil then. I've moved around several time for my job and not a single rheumie has said I needed to start seeing a cardiologist annually. I just saw my rheumie last week, but I do plan on asking her about it at my next appointment. While such check ups may not be considered necessary now, new studies are done rather frequently and additional data may now suggest at least having a cardiologist as part of your care team, regardless of how often an actual exam by them is needed. I would expect the frequency of such an exam to vary with age and length of duration on plaquenil among other factors.

May 6, 2024
A MyLupusTeam Member

Hi Kellie, alas, there are way too many medications to answer this question. Unfortunately, the only answer is that it depends. SLE varies from person to person and what works for one, doesn't necessarily work for someone else. Talk to your rheumatologist about what you can try to start with. Just realize that you will likely need to try different combinations and at different dosages to find the ones that work for you. One staple med that seems to be in most SLE patients' pharmacy is hydroxychloroquine (AKA Plaquenil). I'm also currently on Cellcept (mycophenolate mofetil). My nephrologist had me start taking that again about a month ago to treat IgA Nephropathy (or the lupus since I was experiencing some low-level lupus activity). I take a number of other meds for lupus related conditions, such as Gabapentin for nerve pain, Tramadol for joint and muscle pain, and Bupropion for depression. Psoriasis is a tough one. I don't have it, but my mother did. She passed away about 8 years ago and she'd told me that there weren't really any medications for it specifically (just the symptoms, such as itchiness and I think, sometimes for pain). I've heard that that's changed in the last few years. I believe she was working with a dermatologist to manage it (and/or primary care doc?). One thing that she said helped is sunlight, which of course can be the complete opposite of what you want to do when you have SLE. However, if you don't have any or much photosensitivity, you might try it. She was lucky to be able to go walk around in warm ocean water for about 15-20 minutes several times a week.

May 4, 2024 (edited)

Related Questions

View All
A MyLupusTeam Member asked a question 💭
Pensacola Gulf Breeze, FL

A MyLupusTeam Member asked a question 💭
Concord, CA