Unhappy with treatment

[littlemissp]

I have been a lupus suffer since 2004 and have been on many different medications. I have posted before telling my story of retina toxicity due to hydroxychloroquine and chloroquine in the post. I went to my yearly ophthalmology appointment yesterday and really wasn’t happy with the treatment or non treatment that I received. I feel it’s time to make an official complaint. This is two fold - the first will be regarding my recent appt. And the second will be regarding the neglect that I feel I have suffered in regards to getting the toxicity. Has any try to do anything similar and what has been the outcome. I just wonder how you even start this process. Any advice would be greatly appreciated.

[Mimi1900]

I have been in hydroxychloroquine since 2009. I have been going twice a year to an opthamalogist since then. My most recent one was this week and they do something called an OCT. My opthamalogist said that this allows th to see retinal toxicity much earlier than in the past. I have been getting this test once a year since about 2018 - not quite sure exact year but I had to make sure that my doctor had the equipment to do this once it became available.

The only treatment I’m aware of is that if they detected retinal toxicity they would stop the hydroxychloroquine although I have read that one could possibly switch to chloroquine if need be (but I don’t know if they really do that, at least in the 🇺🇸- From the way that my rheumatoid arthritis and my opthamalogist have spoken about it over the years is that I would have to stop.

For reference I am on hydroxychloroquine, methotrexate and Benlysta.

[DogHospiceMom]

I was taken off hydroxychloroquine after 18 months after it trashed my eyes. I have optic nerve atrophy and I also had severe balance issues. My eye issues continued and I was told by my eye doctor that the harmful side effects could continue long after stopping the medication. After seeing a balance specialist, I was cured of falling from balance issues as soon as prisms were put in my glasses. It only took a year to retrain my brain. To combat the harmful effects and get the chemicals out of my body, I used an infrared sauna, liquid glutathione and stem cell patches. After 9 months my Lupus was in remission, however my Sjogrens, degenerative disc disease and Vasculitis is worse. If you research infrared sauna you can find information saying that in one use it removes toxins including heavy metals and reduces inflammation by up to 30%. It was well worth the investment.

[Lex54]

I'd be interested regarding the dose prescribed of Hydroxychloriquine? I go to my optician every 6 months or if I feel my eyes have changed. I have a retinal scan every time. Not had a problem to date and have been on this plus others for 10 years.