Author Topic: INFO ON PLAQUENIL RETINAL TOXICITY  (Read 745 times)


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« on: November 24, 2019, 01:33:00 PM »
Over the years people have been mentioning plaquenil toxicity and the fear of taking Plaquenil for their Sjogrens or autoimmune issues.

I recently discussed this again with my DIL who is an optometrist. This was a more in depth conversation and I did take some notes 8) plus she showed me images of different kinds on line. I saw the normal retinal scans and the abnormal scans of a toxicity. There are many kinds of scans to be seen and this new training on retinal toxicity came out after around 2010 and the information changes from time to time 

My daughter-in-law calls it Plaquenil retinopathy or Maculopathy or Toxicity . I asked her what people should be looking for and she said a doc should mention a Retinal OCT.  A person needs to have a baseline scan done before starting the Plaquenil so that there is the baseline to use for comparison. If a person is told to stop their Plaquenil it might be prudent to get a referral to a retinal specialist to get another opinion.

DIL says that she has seen so many cases of incorrectly diagnosed retinopathy attributed to Plaquenil. It is sort of tricky to identify so one needs to have a doc who knows what it is. My DIL says she wishes she could put out a list of docs who are trained in this but there is no list. Then again it amounts to the fact that probably every state is different on continuing ed training, etc.

This sure makes us work for correct diagnostics so that we can take our Plaquenil because for most of us it does help. She also mentioned that she has never seen a case of retinopathy from Plaquenil and that it is very rare. This is just some info for guidance and is not considered to be medical advice. It is confusing for us when we have to take so many meds, isn't it. This is just from my discussion with my DIL and not even considered my medical advice from her at this time. I have to make an appointment next month to see how my eyes are doing and to get ready for cataract surgery. Take care. Irish
« Last Edit: November 24, 2019, 03:05:25 PM by irish »


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« Reply #1 on: November 26, 2019, 07:56:45 PM »

Thanks for all the good info.  I found it all very interesting.  I know that Plaquinil has really helped me and I would hate to have to stop it and go back to what I was!😱. It?s definitely not a cure all but it has helped me to function again.

Have a wonderful and relaxing Thanksgiving.

62 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.


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« Reply #2 on: November 29, 2019, 07:24:53 AM »
irish I hope your cataract surgery goes well.

Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi