Medication

[loopylyn]

I was prescribed Hydroxychloroquine for several years, with yearly visits to the optician. In the past few years I was asked by my rheumatologist to ween off due to the side effects on the eyes. I took major flare up with joints, I was asked then to continue with hydroxylhloroquine instructioned by the consultants secretary.

My concern is staying on this, how will this effect my eyesight as there no alternative for an antinflamatory painkiller?

[TonyWT Partner]

Thank you for your understandable post. Whilst noting its brevity, I have taken advice from an expert Ophthalmologist with knowledge of Behçet’s. He kindly and swiftly got back:

[Without including the background history also given] the Royal College of Ophthalmologists updated their guidelines in December 2020 for monitoring in hydroxychloroquine and chloroquine users (lay summary on this link):

rcophth.ac.uk/news-views/hy...

Some relevant quotes:

"The prevalence in long-term users appears to be around 7.5% and depending on dose and duration of therapy can increase to 20-50% after 20 years of therapy. Risk increases for patients taking more than 5mg/kg/day. This is important as the only intervention to prevent further damage is stopping the drug.

We recommend all patients be referred for annual monitoring after five years of therapy and be reviewed annually thereafter whilst on therapy.

Monitoring may be started one year after therapy is initiated if additional risk factors exist e.g. very high dose of drug therapy.

Baseline testing for new initiators of hydroxychloroquine or chloroquine is no longer recommended.”

In the past when asked by Rheumatologists if it is OK to start some of my patients on hydroxytoluene, usually the answer is yes except if they already have pre-existing macular disease, e.g. uveitic macular oedema, diabetic maculopathy, age-related macular degeneration as if their vision got worse it could be very difficult to know whether it was due to their underlying eye problem or the drug.

So as long as she is sent for monitoring according to the new guidelines then I cannot see why she cannot continue on it.

I (Chair Behçet’s UK) recommend that you request your ophthalmologist and rheumatologist directly consult with each other and agree the optimal way forward – dependant on your precise medical history/clinical requirements at this time.

[If it might help you to encourage this course of action please forward the recommendation with my comment to them!]

Hope this helps.

Tony

[Hidden]

Hi from New Mexico. The reply from TonyWT quoting an expert opthalmologist who is familiar with Behcets is on point and the best medical advice a patient can follow. I've been on hydroxychloroquine for 13 years and have been consistently monitored by eye and retina specialists every 6 months. I have been very fortunate regarding my eyes. Behcets has affected my heart, caused blood clots, affected reproductive organs, lungs, GI, neuro, autonomic system, inner ear, skin and joints...but quite minimal affect on eyes except for Behcets causing periodic inflammation in tear duct and nasolacrimal area. I'm on a good treatment plan at this stage of my life in my early 50s, and hydroxychloroquine is part of it. I'm not able to take biologics like enbrel or humira because of strong predisposition of cancers in my family ..especially melanoma. I was immediately taken off humira when melanoma popped up on front of my neck. Instead, I am on weekly chemo injection with a vast array of other meds, low dose steroid, along with sublingual and oral vitamin and mineral supplements. Having a team of drs who go by unbiased research, aren't pressured by big pharma's incentives, use logic, and who consider your particular factors as well as approach plans with a calm process will be best for you. Go with your gut and make your voice heard. You are your own strongest advocate during this time of chaos with the global medical and big pharma professions.

In the USA, drs and hospitals are driven and bullied by govt agencies and big pharma to continue the covid chaos and agenda as long as possible and to demonize the use of hydroxychloroquine in every aspect. That our hospitals are given incentives to push covid agendas is dangerous and so damaging to patients with rare diseases who need to be treated on a personal and specific basis. Hydroxychloroquine has been safely used for decades and is a very inexpensive drug compared to the more dangerous and expensive experimental drugs being pushed. Hydroxychloroquine could cause side effects as any other drug, and that's why it's best to be monitored every 6 months by eye specialists. In the USA, the FDA and CDC and big pharma have demonized hydroxychloroquine, because it doesn't rake in trillions of dollars for govt agencies and big pharma as the newer and least tested experimental drugs do. Praying your journey brings you to better health as well as safest and best treatment plan for you.