does anyone know if you reduce hydrox ie go from ... - LUPUS UK

LUPUS UK

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does anyone know if you reduce hydrox ie go from 400 aday to 200 with the side effects ease up ?

kittykat68 profile image
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kittykat68
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Pipido36 profile image
Pipido36

Hi kittykat68

My rheumy reduced mine in January and now from 400mg to 200mg and now I am suffering with Vasculitis which is so nasty. So I had to go back to 400mg again. I am not saying that will be the same with you becoz we all different and the side effects can be different too. Hope you will achieve that. I also wish I could reduce as my eyesight is now suffering.

Take care and stay positive!!

mstr profile image
mstr

Hi Kittykat68, I too am on 400mg daily and twice over the past couple of weeks have tried to cut down. I have not even got past one day. The pain had intensified and my joints were aching so much. I also could not concentrate enough to even be able to read a paragraph from a book. The first time I tried I thought it was just withdrawal but it seems that it is impossible to cut down without bad side effects. I too worry about the effects on my eyesight so a good question you asked and I too look forward to the responses on this one.

E-Say profile image
E-Say

Hey,

I started on 400mg a too, and starting getting splitting headaches! Like, couldn't see anything, couldn't look at lights, couldn't keep my eyes open, they totally knocked me out etc so I got cut down to 200mg. I'll be honest, for me, my side effects stayed exactly the same! I then got told to take it every other day, then every 2 etc and they still didn't get any better so I got taken off it completely by my GP & Rhuemy. Obviously, that's just my body, but I cannot handle that drug at all. I'd rather be achey and stiff than have that headache as it was awful!

Hope it all works out for you.

Em xx

kittykat68 profile image
kittykat68

thanks em , i was exactly the same cluster headaches and constantly felt sick so instead of taking me off them then they gave me antisickness AND migraine tabs, so i asked my gp and they didnt seem to know so i was about to bring it up with my dermy when he said (july last year) right you need to wean urself off of hydrox as your on too many meds !!!! so i have, ive been free of headaches since jan yeahhhh, however ive been progressively loosing my hair in patches and my skin is itching like errrrgggg, so ive been trying to get hold of my consultant to ask for his advice but its been a month so far and he still not answering my emails or phone calls so dont know wot to do at the min:( xx

luupysue profile image
luupysue

You have just answered my question thanks. I stopped all meds in Oct/Nov last year within 3 weeks I was begging for help and told to take hydro at 200mg a day instead of 400mg, since then the pain has been constant and everywhere and the headaches are almost constant, i feel sick and sleep no more than 2 hours a night. I have said I felt better on 400mg but have been told by my gp she doesn't know enough about sle and i must see the rhumy who will advise me if Iam right or not. In the mean time bring it all on no one cares, except us on the end of it all.

kittykat68 profile image
kittykat68

yep lupysue im in the middle of email the director of my local hosp, ive had enough, they treat you like ur a piece ofmeat

Fighting profile image
Fighting in reply to kittykat68

You said it. I think it. A friend of mine states she has an internist who doesn't believe she needs to do it all. She writes referrals, fills out what is necessary for billing and then turns away from the computer and talks. She has to be 1 in a million.

If so many people are experiencing similar side effects surely the doctors cant be unaware.

Fighting profile image
Fighting in reply to overnighthearingloss

Maybe that symptom or side effect didn't happen to be one in the medical school curriculum. The other option: the med student partied the night before and fell asleep in class the day it was mentioned.

luupysue profile image
luupysue

Hope you get answers kittykat68 good luck keep us informed.

Its like if you are tared with a connective tissue disease no on wants you or listens cause your too complicated i guess

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