Plaquenil and mylar rash
Hello Everyone 🙂,
I've been dx'd with RA, Psoriatic Arthritis, and Hashi's for almost 10 years now. My Dr and I both suspect Lupus (despite negative ANA). She prescribed Plaquenil and I was wondering if anyone found it helpful for the mylar rash? I've been using steroid cream but it is still pretty prominent so I'm hoping it might help but haven't been able to find much evidence of it working for the rash. Any advice and experiences would be great!
Thanks!
Leanne
Hi
I haven't had personal experience using Plaquenil, but one of our patient leaders has been using it for years and has written several articles about it. Here is one of her pieces: https://lupus.net/living/about-hydroxychloroquine. How long have you been taking it? Sometimes it can take little time for your body to adjust before you see any changes. I hope this helps manage your symptoms sooner rather than later!
Gabby (team member)I've been on the Hydrocloraquin, or Plaquenil, for about 2 years now. My Lupus was diagnosed with skin biopsies over 3 yrs ago. And after a firey skin rash showed up on my shoulders, across my back, on my neck, jaws and Cheeks. This was following a 10 day pack if Prednisone. Dermatologist diagnosed it. She sent me to a Rumatologist, he started the Hydrocloraquin. After a rough couple weeks of nausea, we discovered that this helped. The painful red firey splotches started to clear up. The achey flu like symptoms, I'd always chalked up as part of the Psoriatic Arthritis, even started to clear up. Another more severe flare up of the flu like symptoms, now has us wondering if this may be part the Lupus instead of the Arthritis. If so, the Hydrocloraquin is no longer keeping it at bay. They've suggested bringing an Endocrinologist on board, to help with all these mounting problems. And the list of medications gets longer and more complicated. Some things that have helped with the Psoriasis & Psoriatic Arthritis, the Gout, and the Fibromyalgia... may not be so good for the Lupus. Except for the Rumatologist that just retired, the rest of the medical world seems to still have a lot to learn about the many faces of Lupus! At this point, I need a gate keeper, someone that knows how to choreograph a routine that can manage all the medications that I need, not a witchdoctor that is mixing up deadly concoctions that do more harm than good.💃 🕺
, Managing the revolving door of doctors that are needed when managing lupus alongside other conditions is a full-time job! We hear you. We need better technology and coordination of care so that you don't have to do checks and balances on all of your doctor's treatment plans! I wish they would communicate with one another better....
Gabby (team member)
I am on plaquenil and it helps. It took a bit to take effect for me. The butterfly rash can be a nemesis and can be hard to settle down. Although plaquenil helps when the butterfly rash comes I find I just have to let it be. If input anything on it really aggravates it. Fresh Aloe Vera seems to calm it down a bit for me. I hope you find something that works ~Racquel~ lupus.net team member
