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My ophthalmologist said the hydroxychloroquine was beginning to affect my eyesight and she felt I should either not take it or take half the dosage. So my rheumatologist’s PA prescribed 1 hydroxychloroquine and a low dose of methotrexate. After reading the product info, I decided I didn’t want to take the methotrexate because of the warning for people over 65, those who use PPIs , or have CKD and I have all 3! Anyone take an alternative to hydroxychloroquine?

October 18, 2025
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A MyLupusTeam Member

@Jacque3--That's interesting about colchicine, which I had read is being used more in various conditions for its anti-inflammatory effects. I did a medical literature search and found a small study that found it helpful for pericarditis in lupus. If it's found effective for lupus as a whole, that would be great, since it doesn't suppress our immune systems.

Is it helping you, Jacque?

October 23, 2025
A MyLupusTeam Member

@Marsha5-- That's a really good point about checking levels, Marsha. Interestingly, I've been treated over my 40 years with lupus at some of the top centers in the country, and only Johns Hopkins checks levels, I have found. It is still not standard practice, and weight-based dosing is still favored, staying at less than 5 mg/kg of body weight.

Donna, the alternatives are all immunosuppressants, unfortunately. Turmeric supplements and omega-3 fatty acids have anti-inflammatory effects and can reduce our symptoms, though turmeric can't be taken with blood thinners. if you don't have organ disease, might you want to talk to your doctor about staying on just the HCQ for now and seeing how you do? Azathioprine (Immuran) or Benlysta are alternatives to MTX to consider if HCQ isn't enough.

October 19, 2025
A MyLupusTeam Member

Let's hope it's enough!🙏🏽

October 21, 2025
A MyLupusTeam Member

No I’m trying a lower dose now, im just not confident that will be enough. I’ll give it a while and see how I feel. I hope that will help my eyes. Thanks for your input!

October 20, 2025
A MyLupusTeam Member

I was not able to take it for very long due to side effects @Nirjana I have been on 150 Imuran daily for quite awhile now.

October 23, 2025 (edited)

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