Reduction in hydroxychloroquine : Hi everyone, I... - LUPUS UK

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Reduction in hydroxychloroquine

heda123 profile image
7 Replies

Hi everyone,

I pray that you are all well. I had a rheumy appointment 2 weeks ago. He's asked me to reduce the dosage of hydroxy to 200mg from 400mg. I'm already feeling the fatigue and a tiny flare. Has any one else reduced their dosage? What have your symptoms been?

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7 Replies
Angela-78 profile image
Angela-78

Hi I reduced my dose to 200mg about 4 months ago I have been fine a bit of pain in my fingers joints buts that's it really ! Hope you feel better soon.

heda123 profile image
heda123 in reply to Angela-78

Thanks I'm hoping its just a little bug too. But Thank you.

GloomyEeyore profile image
GloomyEeyore

Hi. I had my Hydroxy dose reduced last month as my weight has dropped. Not noticed any real worsening of symptoms. Extremely tired but that isn’t new. Hope you feel better soon. Xx

heda123 profile image
heda123 in reply to GloomyEeyore

Thank you

Hi, I was completely taken off of hydroxy (400mg) at the end of June due to a heart issue that trumped my Lupus issues. Prior to that my Lupus was stable and so far I am feeling relatively well. I do take tumeric (liquid version) and keep my diet quite pure, no sugar which feeds inflamamation. Old fashioned eating, lots of veggies and real food, nothing processed. I am a little achy in the morning, and had some numbness, tingleing but also was under a lot of stress due to my mom who was hospitalized for pnemonia. Please take good care of yourself, doing what we know is good for our bodies. I cannot stress enough how vital it is to just eat basic, pure, unprocessed food. And get some sound sleep. I've been burning the midnight oil due to life's demands but God has shown me that rest is crucial to our health. I wish you the best. It's a journey but I like God is with us on this path.

heda123 profile image
heda123 in reply to

Yes you are right God is with us. For the past 2 years i did this whole clean eating and exercising thing but one day i got so tired of preparing meals for myself and separate for my hubby and i just stopped. Its so much easier to just eat processed foods especially when your always on the go. I am slowly going back into it after a 5 month break. I am also taking turmeric everyday for the last 2 weeks and i just need to carry on and do it consistently. Thank you. I will give myself a couple of months and see how i manage with the hydroxy reduction.

in reply to heda123

I sure hope you do well with the reduction. I thrived on hydroxy, never had any flares. But I have a heart issue (long qt) and it hyroxy was on the "medications to avoid" list, so we made a decision to stop. My EKG was normal at my last cardiology visit. As far as eating pure, my diet is actually really simple. I eat an apple everyday, a banana, an avocado. I eat almond butter and coco aminos. Not sure if you have access to this brand, (Big Tree Coco Aminos) but I cut up any veggies I have and pour the amios over it and I'm addicted to it. I don't cook much, I just eat simply. I do make a big crock pot of soup every week, and my family is in heaven. I'm way too busy to make elaborate meals. My son, who is now 24, also has lupus, diagnoised at age 14. He has it much worse than I do and he has a lot of pain. He is not consistent with his plaquenil though. He is actually the one who started me on the "better eating" journey. We also both have Sjorgren's. The eye specialist cauterized my tear draining tear ducts to help me keep whatever moisture I have. That was a very good decision. Hardly ever have to use eye drops now. Also, I forgot to tell you that a very good internist told me that these things are crucial to our health: take probiotics every day for the rest of your life (I cannot stress that one enough), take Organic (Bragg) apple cider vinegar everyday, tumeric (which you already know), green tea with honey and lemon, and make sure your vitamin D levels are in check. Take care of yourself too with good sleep. The bible says, "Whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable -if anything is excellent or praiseworthy- think about such things". Phillipians 4:8. In other words, look on the bright side, find something worthy to be glad and grateful for, that will keep your heart in check and give you a reason to hope. Take care, I'll be thinking about you.

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