Increased Hydroxychloroquine : My meds were doubled... - LUPUS UK

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Increased Hydroxychloroquine

Kazwaz1980 profile image
8 Replies

My meds were doubled this week - I had been on one a day and it was doubled to 2 now- I know the loading dose took 6 months to get in system but I presume it’s quicker rate when it’s increased? As per other meds? Anyone know how long it takes to kick in?!? This heat has set me off and it’s horrible!

Also I have a second question!! I’ll put it in a separate question though

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Kazwaz1980
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8 Replies
whisperit profile image
whisperit

Not sure I know the answers to your questions, but hbere's my best guess! Steady-state plasma concentration is reached more quickly with higher doses, but how long this takes varies quite a lot from person to person, and is delayed if you are vitamin D deficient. Once you have reached your maximum dose, it would be unusual to continue taking HCQ for more than an additional 6 months if you show no signs of improvement. Other people might know better! x

maggielee profile image
maggielee

When I was first prescribed hydroxy it took a few months to suppress the rash & begin feel better, but it was many months to get the full benefit. I was asked to reduce during winter months & it took about 4 week's to realise I was achy & felt like I had a flu, no rash yet. When increased in response to this I was back to two tablets a day it did take me months before I felt the full effect.

I was very disappointed that behind this my sjogren s was 'kicking & I have never quite felt right after reducing it the first time & now stay on 100mg per day plus taking small dose of mycophenolate (plus other meds for various ailments) to combat sjogren s as well as SCLE... Agree whispering that it is individual response, but I better with it then without it...

Hope you feel better soon...ml

Kazwaz1980 profile image
Kazwaz1980 in reply tomaggielee

Hey thanks- yes I too am Sjogrens... clinging on at the moment. Titres are all mild positive but I feel dreadful.

I think it’s different if you increase from a drug that is already in your system but I was looking for confirmation.

I feel 50% better on the drug... and I don’t think that is placebo. It took 6 months to feel good and I had expected it to work in 3 or 4. I now wake up on a morning!!! Haha

puffyface profile image
puffyface in reply tomaggielee

I am wondering if this is why I'm feeling so bad. I reduced from 400 to 200 about a month ago and feel like I have Flu with rash. My hips are aching, feet burning, legs aching and very stiff and sore in the morning. Was presuming it was a flare, but maybe reduced dose? My kids have just broken up from school so v bad timing. I now also have awful tummy. It might be a bug, but nobody else has it? Could this be SS/SLE related?

maggielee profile image
maggielee in reply topuffyface

Just like I felt when I was reducing hydroxy, it does make doubt why you feel this way, for me increasing it again made a big difference. As I am if sensitive reducing during the spring / summer would really cause problems.....discuss with your gp if you can... ML

Frosty1960 profile image
Frosty1960 in reply tomaggielee

I was on that, but was making me sick a lot, I am now on mycophenate and feel bit better.

Sarahd1609 profile image
Sarahd1609

I did the loading dose of 400mg for 6weeks but when they dropped me down my flare ups worsened so they put me back on to 400mg and I have been for 3 years xx

MandaM profile image
MandaM

Ive only just been introduced to Hydroxy last week and am on 200mg twice a day. I was told it takes 12 weeks to kick in. I also take two lots of immune suppression, mycophenalate and Tacrolimus which I've been in since transplant in 2006. I can see others saying that it actually takes six months to feel better. I really hope not 😣 Good luck with the mass. X

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