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I have just been diagnosed but I have been telling Doctors for twenty years that I had Lupus. I don't feel like the medication is going to make any difference. I am being prescribed hydroxychloroquine and I'm supposed to go get a eye exam and because I have had blood clots a few years ago my Rheumatoligist wants to change my blood thinner from Eliquis to Warfren. It really just makes me wonder why all the changes? Has any one else gone so long without a diagnosis and found that when they started… read more
Yes the plaquinil has helped me substantially.Even though I am getting over a small flare...i haven't had one since end of March early april...Mine come more often and more pain,cog fog,etc...Everything symptom was much worse...I believe it wven help my gastro issues...
hydroxychloroquine was a genuine game changer for me. I didn't realize how much until I was off it for 2 years (long story) and in a constant flare. It is one of those meds that takes a while to kick in though, I think when I started taking it again, it took about 3 months or so to really start helping.
I can understand the skepticism. We have to do what's best for us and be our own advocate. But if there is a chance to improve and the benefits outweigh the risks for you, it's a chance. Hopefully you can address your concerns with your doctor and ask questions.
Everyone has to take an eye exam annually on hydroxychloroquine, because there is a very small risk of retinal issues.
Here's my perspective from my own lifestyle, I was holistic from 2017 until 2024, I was originally diagnosed with borderline lupus and sjogren's syndrome in 2016. I got covid 4 times between 2019 - 2022 and each time it got worse. It was 2024 when I got officially diagnosed with lupus and I still remained holistic fully, great nutrition and just low stress lifestyle. November 2025 lupus started progressing because my labs got worse and joint pain and fatigue were severe and I still was holistic. Then March 2026 my BP was severe at highest 203/113 and that made me say wait medication might be needed. Lupus is still active and I began benlysta in March to a 4 week break and began in June again, I also take 2 BP medications and next week potentially changing medications or adding them. I'm not sure if they are fully working, but I'll say this what are your numbers, symptoms, lifestyle, nutrition habits? Managing lupus holistically is not easy and even when you do there's things that can come up so you have to be careful. Find a great Rheumatologist and then find a great functional medicine doctor
@A MyLupusTeam Member you're most welcome beautiful 😍 it's a journey
@A MyLupusTeam Member awww thank you so much beautiful 😍 yes it's been quite the journey, many times I have felt so broken and many times I've felt amazing. And now I realize there are ups and downs and to pause and be patient. I am grateful to share my journey and hope to impact others in a great way to advocate for themselves! Sending you love and hugs boo 😘 have a fruit filled weekend!
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