Changes.....

[Kriss53]

Hi all, I've been on hydrachloxichlorin 400mg daily my rhumi halved the dose three weeks ago after 15yrs on it said that was too long as it can damage your eyes, now I'm in pain all over with chronic fatigue ,major flare ! Help ..... what should I do? Anyone else been on same for long periods ? Thanks for reading hope your as well as can be.take good care of yourselfs.

[MO3S50]

I just started this drug. I hate it. I am turning to a natural diet plan. I searched on Instagram ( lupus warriors) and asked for help. There seems to be a huge movement on Diet change verses taking all these drugs. For the pain which I get😩,I live with 24/7 , I take a few different things. I find Ibuprofen the best and MSM, b12 shots, good minerals ect helpful. Keep researching , be super proactive!! Use topical creams too! ( if you can get a card for natural pain remedies) MJ vapes.(depends where you live. ) all these otc drugs they keep putting us on cause one interaction over another, one more added problem! One more reason to withdrawl after stopping! When does it end? Best of luck to you! Praying 🙏 you get answers ! Xx

[Susan712]

Hi ive been on hydroxy for over 20yrs. My rheumatologist said exactly the same thing to me. I started to reduce the dose gradually until i was completely off it in May. Apart from feeling more tired and having alot of pain in my right foot i have been ok.i tend to pace myself and dont try to do too much in one day.

[chrisj]

Hi Kriss - When my rheumatologist decided to reduce my hydroxy for the same reasons as yours, he also said if you feel worse put the dose back up again yourself, I didnt need to wait to see him again. I persevered with the lower dose and haven't increased it but if you're feeling so bad maybe you should take more and stay with the dosage you've had all those years. Its 13 years since I started taking it and 3 years since the lower dose. I have my eyes tested once each year and am always reassured there is no damage to my eyesight. Difficult one but you need to do whats in your own best interests

[Paul_Howard Partner LUPUS UK]

Hi Kriss53 ,

I'd recommend getting back in touch with your rheumatologist to let them know that you are experiencing a flare following the decrease in dose. They may need to make a decision about balancing the risks and benefits of this treatment and maybe consider a slightly higher dose, such as alternating 200mg/400mg each day for an effective 300mg dose.

[Poshcards]

Hi, I have been on it for over 20 years now xx