Have you tried turmeric with black pepper? I got that idea from HenryEy who is a doctor that contributes here. My older sister has lupus and I had her try it a couple of years ago and I believe that it has helped her lungs get through the winter. I honestly thought she was going to die a couple of years ago because the dry air was upsetting her lungs so much and they get inflamed, but this seems to be helping. She takes two pills a day. They don’t bother her stomach at all, but then she doesn’t really have stomach issues. But she even takes them on an empty stomach and she’s okay with that. I believe the brand I buy her is Swanson. They’re not terribly expensive either. I also have her on a liquid vitamin D. I know you have to be careful with that, but she can’t go out in the sun, so I think it’s helpful. I’m not a doctor. But I thought I would pass that on. Take care! 💕

I agree with others that it can be dangerous to stop your meds and can trigger flares. Especially if you have had any organ issues, it's very risky.

Please find a new doctor, Machel, as there are many caring doctors out there! Have you tried your local university hospital rheumatology department?

@Laurie211--I agree that turmeric with black pepper is a power anti-inflammatory and helps us, but it's important to avoid if you're on aspirin or other blood thinner, as the combo can cause bleeding. It's best to discuss it with your doctor first, too.

@MaryDacey--You've been through so much, and I'm sorry you had retinal damage from hydroxychloroquine. In the past, the doses given were too large, and it was only later determined that limiting the daily dose to a maximum of 5 mg/kg of body weight markedly reduces the retinal risk, though there are other rarer risks with very long-term use. I was lucky and could take HCQ with very good results for 32 years.

Have you tried scleral lenses for your severe dry eyes, Mary? They help tremendously!!!

@TammyNegelein--You may want to consider a second opinion, as Cellcept is primarily used for nephritis or other major organ disease. To my knowledge, it's not been shown to be effective for joint problems, and it's a strong immunosuppressant! It generally should not be used except in organ disease, as the risks likely outweigh the benefits for joint issues, fatigue, and other symptoms.

I’m with everyone else , I seriously think it’s a bad idea to stop any medication without discussing it with your doctor first .
I certainly understand how you feel, I’ve gotten some uncomfortable side effects with my meds but then I realize my doctor has weighed the risk vs benefits and figured the benefit would out weigh .
I certainly hope you can find a solution that you and your doctor can agree on .
God bless