From the beginning of treatment my rheumy put me on 400mg of Plaquenil daily. I take one pill in the morning and one at night. I struggled sticking to my meds and treatment plan for the first couple months or my diagnosis because I was in denial and didn't really believe it so I just recently started taking my medications again as prescribed (I was diagnosed October 2015).
I’ve been on Plaquenil for 17 years, I take 400mg every evening (2 pulls at same time), and have never experienced one side effect. I believe it has helped my Lupus for progressing. I have my eyes checked twice a year and so far no issues. I also take Tumeric and ginger supplements, eat only whole (unprocessed) foods (no dairy, gluten, peppers or corn). Did an elimination diet to find out which foods cause me to flare - so helpful!
I was having a very hard time with the generic version of Plaquenil, still achy, itchy rashes 😣 and then my doctor wrote the script requiring brand name and it works wonders. Side effects are gone and I feel much better.
I've been on 400mg plaquenil for 5+ years. I suspected maybe I didn't need it and discontinued it, and I got much worse. Turns out my lupus was progressing, and the medicine was holding it in check and also keeping my numbers good. I'm just getting to the point where I NEED something else ([[treatment:methotrexate):561862591fcaa3c0df0000fc]]). Remember you can't see what the lupus is causing to happen until it effects you enough to show up on tests. Suppressing the immune system and taking care of yourself keeps you in the "not dying" catagory. It is very scary to go from "not dying" to "organ shutdown" or "septic shock" very suddenly, but that is more likely to happen when you give your immune system freedom to play.
I know this may not be what you want to hear. But I feel your pain I was on medication for years for sleep and anxiety. Just like Oxy's the doctor got everyone hooked on them depend on them and now the next step is to get you off them. And if your doctor's are cutting your dosage you on your way to being cut off ...
If you are open minded
Best bet is medical marijuana. It's safe. Non addictive. Can you never OD on it and Dr will never take you off it.
Obviously do your own research. I just want to prepare you for the next step. Your doctor's are about to pull your pain meds from you.
I took plaquenil forseven years before I quit taking it. Because of taking plaquenil I got cadaracs on both eyes and had to have surgery. When I stopped I started having sharp pains in my stomach. So bad I called my son and told him I was dying. I passed out before he got to my house. He called 911 on his way. When I woke up I was in the ambulance with an IV taking Demerol. I felt the pain leaving me. Long story short I had a bad pancreas attack and my potassium almost bottomed out. They said I was very lucky. My doctor told me the Lupus attracted my pancreas. He asked me had I been taking my medicine and I told him I quit it because I thought it wasn’t helping. He put me back on the plaquenil and told me never to stop taking it. That was two years ago and I’m doing ok except the pain all over my body is sometimes hard to bare.My sister had Lupus and she quit the plaquenil to . She passed away five years ago. It does nothing for the pain I have in my body but I suppose it helps your organs being attacked. I know everyone is different . But I’m staying on it . I think my sister might be alive if she hadn’t quit taking it. Lupus attacked her lungs and heart. She had peumonia all the time. She was in the hospital all the time. I decided to keep taking it although it really affects your eyes , but I sure don’t want another attack like I had. I thought I was dying. Lupus doesn’t get the attention it needs. Maybe someday they will find a cure. That would be wonderful. God Bless you all... Vickie
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