Hydroxychloroquine

[Ncoff]

Wish me luck starting the above mess tomorrow for 2 months, 5 days a week.

Any recommendations gladly received re side effects etc...

[Ricexxjm]

I did fine....no bad side effects, on hydroxychloraquine,

Unfortunately....not enough of stopping the c r e s t symptoms or mild scleroderma.i will need to add probably methatrexalate to try and bring to better results. Hydroxyl was not too exspensive.

None was too comfortable for my oncologist and for bringing the cancer back.

Good luck.

[LucyJean]

Hi there, there are a lot of posts on here about HCQ so I would stick the term in a search and see what comes up. HCQ is a funny drug, being an anti-malarial you wouldn't expect it would be routinely given to people with connective tissue disease like scleroderma and lupus, but if you tolerate it well it is a drug that has many many beneficial effects. In fact one of the Consultants I used to work with said it should be put in the water (like fluoride!)

Not only does it provide good symptom control for mild disease but it has a beneficial effect on the cardiovascular system and lowers blood sugar levels. So, please don't start taking it with the attitude that it is a terrible mess, because it is aiming to get you out of a mess. It has been used in treating Lupus since the 1800s! If you are concerned, and you are generally a person who does not tolerate medication well then discuss with your Doctor and start on a slightly lower than recommended dose and build up your tolerance gradually.

It is not a drug like paracetamol that has an immediate effect, it can take 12weeks to start making an impact, and up to a year to be having a significant effect, but give it chance.

All my best

Lucy xx

[Aotearoa78]

I've been on it for ages and it's fine

[Kingfisherblue2009]

Hi I had terrible side effects with Hydroxychloroquine. Everyone is different and it may suit you. I took this tablet for around 2 years. I just told my consultant I am not taking it anymore.

From the second week I started taking the tablet, the eye problems started and I found it has taken some of my sight. I was having pains in my eyes, like a very dull ache and there all the time. It was just so uncomfortable. Also very dry eyes and mouth. I took myself off it in October last year and found my eyes stopped hurting and the ache has gone. No dry eyes.

I hope it helps you.

[MFC911]

Hi,

When I first started on it I was feeling disgusting. However, after some homework I discovered that different manufacturers use different binding agents in the recipe, some of these agents can be detrimental to the symptoms. In my experience Plaquinel caused me more trouble than it was worth. I have been taking "Zentiva" brand for three / four years now. No problems at all. I hope it goes as well for you. There is no reason why it shouldn't.

Good luck. Regards. Mark.

[hunkyd0ry]

I had it prescribed to me since I complained of pains in my joints. I have limited Scleroderma with most of the CREST symptoms. I understand that it is a regularly prescribed drug for RA, which seems to be loosely linked to Ssc. So far no side effects and the joint pains are gone. So happy days for now!

[Dunhorse123]

Hi, I’ve been on it or ten years with no side effects at all. It’s considered to be a very mild medication.

[trunchalobesity]

Ive been prescribed this for a few months now. I take 4 tablets a day every day.

I felt a bit nauseous to begin with but i take them with food and that has worn off. My finger joint pain and my hip were really quite bad. It is slow to make an affect but it is good for me and I will continue to take it.

I have Scleroderma.

I do need to make an eye appointment, but that is not a problem and will have my eyes monitored at the hospital too.

Good luck

[Ncoff]

I take zanteva on recommendations from consultant he was very specific I use this one.

Thanks guys fingers crossed it helps

[Gmargs]

Been on this med (200mg a day) for years. No problems (ie: no nausea etc.) but reading other comments here, I’m on a low dose (I take others meds as well with it).

Not sure if it is helping my condition symptoms or if causing other issues I have developed, but it’s always hard to know if the symptoms are due to one medication or another one or one counteracting with another or if it’s just the condition one has. That’s why it is important to have the follow up checks and blood checks to make sure things are in control.

I have less leg cramps since being on Hydroxychloroquine.

One more point that Mark (MFC911) brought up is different binding agents can disagree with some people (had this issue once when given an alternate brand ‘omeprazole’ med, so know I can’t take that brand but no problems with my usual one.

Try not to worry, it’s a slow acting drug and hopefully your doctor starts you off on a low dose and goes from there.

All the best, Marie

[AnnieMc]

Hi there, I have been on Hydroxychloroquine for some years now for joint pain connected to Scleroderma, however I don't find it very effective. Long term use has caused slight deterioration in eye sight which is being monitored, apart from that no other side effects. I would give it a go, as not everybody will have the same or any side effects, it just might work for you. Take care.

[Tranhare]

I've been taking it for just over a year now, originally on double dose now on a maintenance dose daily 7 days a week. No problems at all with it and yet I've tried methotrexate twice over recent years and has no benefit at all, in fact I was so ill with it I had to stop work, once stopped I was then started on hydroxychloraquine and haven't looked back

[Ncoff]

I have been getting really bad headaches and throbbing in ears would this be side effect of this drug