Moved onto Hydroxycholoroquine

[gr95]

Hi all,

Been moved onto just hydroxychloroquine which puts the risk factor down, can anyone clarify this?

Also any experiences on this med?

[helixhelix]

It is an anti malaria drug, so does not suppress or compromise immune system. And it is generally thought to be the mildest of the RA drugs. i took it for 8 years with no problems. Just get your eyes tested before you start, and then regularly afterwards.

[gr95 in reply to helixhelix]

Wear glasses so get regular check ups. Latest was about a year and will book one next year.

[nomoreheels]

It was my first DMARD & was on it for a year. It worked well then just stopped working so well. Unlike other DMARDs there are only two doses & as I was on the higher there was no option but to change, though I did stay on it whilst its replacement, MTX, had time to work.

You were probably told this but you need to have your eyes checked before or just after starting it & annually thereafter. I had light sensitivity & headaches on it so as well as my first normal optometrist exam I had other checks in hospital with the ophthalmologist. All was fine though, I had no other issues.

I hope it works well for you.

[gr95 in reply to nomoreheels]

How soon after starting considering the current climate? A month? Two?

It being milder now only in Social distancing category would having an eye test be okay?

[nomoreheels in reply to gr95]

I know in England Specsavers are doing eye tests, routine ones anyhow. I believe they contact you prior to your appointment, I would think just general questions, so that you don't need to be in store answering them, can have your test & go. Don't know about other Opticians I'm afraid. I know because coincidentally I received a text this morning reminding me mine is due.

[gr95 in reply to nomoreheels]

So being just on hydroxychloroquine are we just social distancing now? Maybe more strict with shops etc but mostly in the same ballpark as others now.

[JFlay in reply to gr95]

That's what I have been doing, strict social distancing, it was the advice in the letter I had from rheumatology re hydroxy. I wear a face covering in shops and keep a distance when meeting up with people outside.

[cass24 in reply to gr95]

As far as I'm aware, those on hydroxy only never fell into the shielding category anyway so I would guess that sensible social distancing should be fine, although if you were taking something stronger previously then maybe worth letting any lasting effects of that wear off first?

[JFlay]

Hi, I take just hydroxychloroquine. The only thing I've noticed with it is it gives me wind and grumbling guts, it's better to take with food or a cup of milk to remedy that. My eye test is overdue but haven't been able to get one booked yet.

[Sheila_G]

You need an Amsler test chart for daily eye testing. If you haven't been given one, ask for one. x

[cass24 in reply to Sheila_G]

OK you have me worried now... I've recently been prescribed hydroxy to add to the Mtx I'm already taking, and I've had problems with my eyes in the past. My rheumy has specificaly checked with my eye consultant to make sure my past issues do not contra-indicate the use of hydroxy and I've been advised to have regular tests of course but... no one has mentioned the Amsler chart or *daily* checks... I also understood that any risk of hydroxy causing eye sight issues tended to come with longer term use...

I've actually been delaying starting the hydroxy anyway, but you've got me thinking I maybe need to do some more investigation before I do...

[Sheila_G in reply to cass24]

Sorry, I don't want to worry you. It is just another safety check. It is at least 15 years since I took it. Maybe things have changed now. They always gave this chart when on hydroxy because of a risk with sight. It is a small, approx. 5"square card with a grid on it and a little spot in the centre. I was told to keep it on my fridge and check every day. If there was an issue they just stopped the hydroxy and things went back to normal so no need to worry. Did your Rheumatologist put you on it or GP? Speak to whichever one and if you need one they will tell you how to use it. x

[cass24 in reply to Sheila_G]

Thank you for the clarification and that sounds a bit more reassuring

It was my rheumy who prescribed the hydroxy, and I know he checked with the opthalmic consultant who treated me for my previous eye problems (because I've seen the letter he received) so hopefully I'm not at a much higher risk than anyone else in that respect...

Due to past experiences, I'm already hyper-aware about my eyesight anyway so I think/hope I'd notice any changes pretty quickly (and that's certainly reassuring if they could/would be reversible if they do occur) but I may just look into getting my hands on a chart anyway. Google shows me I can download one from online but I'll mention it to my rheumy too.

Thank you again x

[Ferret18]

It tastes vile. I take mine with Greek yogurt

[NanaFifi]

Hi gr95, I’ve been on hydroxychloroquine for nearly 40 years. My Rheumy told me it’s the best drug for controlling my Lupus. I’ve never had any side effects and no longer have my eyes tested. I also inject methotrexate for my RA.

I hope it works for you. X