hydroxychloroquine increase

[Adorable1]

Hi

I spoke with rheumy nurse a week ago and said my stiffness seemed a little worse, generally felt exhausted and unwell. Not improved

I only started on hydroxy around 3 weeks ago 200ml not really any side affects I’m aware of, slightly headachy at times but nothing else.

Received a letter today to increase Hydroxy to two tabs of 200 ml a day.ie 400ml they have informed my GP

Anyone else done this ? I’m a little unsure if to stay a little longer on 200 ml ..hard to make decision what’s best at times. I realise we are all different and it’s my decision , just wondered if anyone had any experiences and what their opinion was.

😊 thank you

[rmros]

Hello. Have always been on 400mg and only briefly dropped to 200mg - I was told to because I'd lost a lot of weight - and flared instantly. Went back up to 400mg and no problems. Make sure you have your retina toxicity screening.

200mg is a low dose of one of the weakest drugs in our canon. It's a well tolerated drug so if you can stay on it you might find it easier at a higher dose than the alternative. The alternative is trying another drug that might have more side effects.

[Adorable1 in reply to rmros]

Thank you for sharing. It really does help

Amazing how it helps to discuss it here.

Yes they mentioned the toxicity screening I’ve not had it as yet.

[Boxerlady]

I started on 400 mg and have had no problems with it. It's one of the weaker DMARDS, as I understand it and although it's enough for some people, many (myself included) take it alongside other ones. I've also been asked to try dropping to 200 mg on a couple of occasions but had problems quite quickly and they were happy for me to go back up to 400 mg. Personally, I have always followed my rheumy teams suggestions; when it hasn't worked as well as we'd hoped, I've got back in touch and they've been happy to readjust things. This is a marathon rather than a sprint but I've always been happy to try anything they recommend in the hope that it will get me down the road a bit quicker and so far, so good. 😊

[Adorable1 in reply to Boxerlady]

Thank you for sharing this. Really helps to hear how others feel and how they’ve coped or not ..we are all different And I realise that and take it into account. I find it helps when you get a bit overwhelmed to ask here and see how others have felt and their experiences ..im very grateful for that

[AgedCrone]

One thing we all had to learn at the beginning of our RA journey …is that 9 times out of 10 our rheumatologist is the best one to decide which drug we take & when to increase/decrease the dose.

If we decide not to take a drug as instructed our rheumatologist will be in the dark……thinking we are sticking to plan….so just try to stick to what is advised ….hopefully you will be pleasantly surprised…but it will take time….RA is not controlled overnight.

Good luck with the increased dose….it always takes longer than we hoped to get settled on the right drug & it is a new experience for you….but sticking to plan will pay off.

[Adorable1 in reply to AgedCrone]

Thank you for your reply. Yes agree and I guess if you don’t intend to follow his instructions for some reason would be good to discuss. I am going to follow what he’s advising I think it’s best right now. I have an appointment with him in November so can also discuss then.

Thank you again ,

[AgedCrone in reply to Adorable1]

In fact, unless a medication you are prescribed is causing really serious side effects…which should be reported immediately…RA treatment is not to be messed with at will.

If you have doubts please talk to your rheumy team.

When you have been reading here for as long as many of us….you will see that those who think they can pic’n mix as they feel inclined….don’t do too well.

[Amnesiac3637]

As Aged Crone has said, if you are on drugs prescribed by an expert rheumatology consultant please do what they advise for you and talk to the team if you have any problems so they’re aware of what’s happening and can help.

The problem with asking general advice about dosage is that people’s particular circumstances medically will not be yours even if they’re on the same drug so all that happens is you can get a lot of conflicting opinions which can totally confuse you.

Hope you get on well with the new dose.

[Adorable1 in reply to Amnesiac3637]

Thank you.