Hydroxychloraquin

[Mandypandy1969]

Hi all, I have been on hydroxy for two days. Yesterday and today I have been frozen. Hot water bottle in bed last night and in the day today. I have had a blinding headache and been asleep most of the day. Feel worse than ever. Anyone got any feedback on side effects of when you first start hydroxy?

[LLH76]

I started on 200mg six weeks ago, still waiting on the benefits which can take 3 months, the only side effects I think I'm having is mood swings and a bit light headed, feels like a placebo at the moment!

[Mandypandy1969 in reply to LLH76]

I am on 200mg twice a day. last 2 days I have been so cold and a really bad headache today. been sleeping for most of the day.

[alisoncrowther in reply to LLH76]

I have on it for last six months not made any difference to my symptoms at all still feel terrible

[LLH76]

As I'm only on the lower dose at the moment I'm giving it the benefit of doubt and obviously I still have an increased dose open to me, but if after 6 months nothing was changing, I'd probably be going back my rheumy to discuss..I would still want to exhaust it as an option because the whole steroid thing scares me!

[Mandypandy1969 in reply to LLH76]

I was put on steroids after my first visit to rheumatologist. the effects were fantastic and i felt well for 3 weeks until my course was coming to an end. ever since then I have been in deep depression. on my second visit I was given a steroid injection and it only have some relief for 2 days. I am now in hydroxy and feeling even worse, although only been on it for 3 days. I had a blinding headache yesterday and slept most of the day along with feeling really cold and had to have a hot water bottle, went to bed with one night before also as so cold. waiting for rheumy nurse to call me back as I rang her and said she would speak to rheumatologist as she thinks I may need another course of steroids as e.s.r. rate is 66.

[Lupiknits]

It has taken quite some time for hydroxy to make a difference for me, but it does. When I started taking it, it upset my stomach a bit and made me very itchy. The stomach resolved after 2-3 days and the itchiness after a couple of weeks. Any coldness I have is from Raynaud's.

[Mandypandy1969 in reply to Lupiknits]

yes I have raynauds. I was absolutely frozen. x

[Cas70]

Been on 200mg per day for a year. Never heard of this side effect - only know it gave me my life back - take this symptom to your docs as it sounds like it needs investigating. Good luck

[Paul_Howard Partner LUPUS UK]

Hi Mandypandy1969 ,

I'm sorry to hear that you've not been feeling well after starting on hydroxychloroquine. Out of interest, what brand have you been given? Some people find that one brand of this medication suits them better than others. You can read more about this at lupusuk.org.uk/hydroxychlor...

Please keep us updated with how you are getting on and what your consultant says.

[Mandypandy1969]

quinoric.

[Paul_Howard Partner LUPUS UK in reply to Mandypandy1969]

That is the brand that more people have adverse effects from - although I am not saying that is necessarily what is happening here. It may be worth discussing trying a different brand though to see if it has an effect.

[Mandypandy1969 in reply to Paul_Howard]

I have only been on them 3 days but I will mention this when I next go to the surgery as I have to pick my steroids up tomorrow.

[DonnyJM in reply to Mandypandy1969]

Quinoric is not good for us Lupies - something in it tends to react in us but it's the cheaper and common brand so it often gets given. You need to ask for another brand which is the following:

HYDROXYCHLOROQUINE SULPHATE (ZENTIVA) 200MG FILM COATED" and the 'PIP number' (product code) is 1201730.

You may need to ask you GP to specificity add this to your prescription as some pharmastists will not listen....

Ask your pharmacist first and if not GP but INSIST on this and don't accept Quinoric - hopefully that will help

[Mandypandy1969 in reply to DonnyJM]

Thank you. I will tell the pharmacist when I next go to the chemist to pick my other medication up which will be before I pick the next lot of hydroxy up.

[Mandypandy1969 in reply to DonnyJM]

ThankYou. X

[DonnyJM in reply to Mandypandy1969]

Is it wait and ask them to change it now rather than continue to take it 😊

[Mandypandy1969 in reply to DonnyJM]

why are you given this cheaper brand in the first place if not good for our condition and what side effects does it have? since I have been taking it for the last 3 days I have been very cold and have had to have a hot water bottle which is not like me. I had a splitting headache yesterday and slept nearly all day. picking my steroids up tomorrow as the injection didn't work and aching all over and so tired. really don't need to be on this quin thing as only just started on these damn meds don't need anymore problems. had enough now I have heard this about what I have been given as a cheaper alternative. sorry for moaning but i have been really struggling these past few months. x

[Mandypandy1969]

ok. I have to pick up my prescription for my steroids tomorrow. who should I speak to?

[Mandypandy1969 in reply to Mandypandy1969]

why is this brand not good for us?

[DonnyJM in reply to Mandypandy1969]

It can have different affects on different people just like Lupus does itself. I was told it's the stuff they use to fill out the tablet that causes issues - for me it made me sick and they give it cos it's what's commonly available- the Zentiva one needs to be specially ordered in

[Mandypandy1969 in reply to DonnyJM]

I haven't felt sick just very cold and couldn't stay awake for 2 days. I don't feel as bad today but I will take your advice and make an appointment.

[DonnyJM in reply to Mandypandy1969]

I'd Ask to see a GP to redo your prescription