Hydroxychlroquine

[Hels1989]

Started my first DMARD, Hydroxychloroquine yesterday an wondering what side effects people have experienced please? I also start methotrexate in 2 weeks time!

[SoulmanPaul]

Hi. I've been taking it for 2 years along with Mtx and never had a problem. I was warned about upset stomach but I take it after breakfast and no issues. They'll have told you about yearly eye tests I'm guessing? My advice to you and anyone else about side effects is don't worry about them unless you get them. When I was first diagnosed I read up on all the meds and was terrified. My fears were mostly unfounded.

Best wishes

Paul

[Hels1989 in reply to SoulmanPaul]

How do you find Mtx? I'm going to be on both but started one at a time so if I have side effects they know which is giving them, makes sense I guess!! Do they both work for you and what is your disease? (Sorry for the many questions I'm still very new to all of this). I am a little worried il get side effects but if they help me il just deal with the side effects I guess. Thanks for your response 🙂

[SoulmanPaul in reply to Hels1989]

Hey no problem...ask away! I've got Seropositive RA. I've only had 2 issues with Mtx. Like most people I gather...it drains the life out of me for a couple of days after taking it. Not in a scary way...just a lack of energy and a bit drowsy. Not really an issue as I've not worked since diagnosis! The other issue for me is high Liver function scores. I've had these since the early days and its recently transpired its due to 'Fatty liver'. In practice it means I've never been allowed a dose higher than 15mg...low compared to most people and to my mind the reason my RA isn't better controlled. I'm sure you'll have 2-4 weekly bloods once you start Mtx so don't worry!

Paul

[Hels1989 in reply to SoulmanPaul]

Thanks for the reply Paul 😊

[SoulmanPaul in reply to Hels1989]

You're welcome Hels

[Mandy8175 in reply to Hels1989]

I had hearing issues on the Hydroxycloroquine so it was stopped. I am on Sulfasalazine and mtx now. I took mtx for 3 weeks then had to stop for head cold/antibiotics. Mtx made me pretty sick week 1, a little sick week 2, and week 3 I was just tired! Been 2 weeks without mtx and my joints are hot, red, swollen, and painful! I can't wait to start taking it again!

Best of luck to you, and make sure they give you daily folic acid supplements to stave off mouth sores!

[Sitka2018 in reply to Hels1989]

I have been on methotrexate for 30 years. I have arthritis and proriasis. The doctors tried everything but way back then there was not many drugs available. I am on a low dosage, 3 2.5 tabs weekly. They are a godsend. My eyesight has been affected, especially with night driving. But it is a small price to pay to relieve my pain. I make sure I do take the meds with food or I will get a little nausea. 30 years on a med is a long time. Just make sure I eat a nutricious diet.

[Juliemorrison1959 in reply to Hels1989]

Taking methotrexate shots& Hydrox oral no side affects only sore mouth. I was misdiagnosed by a rheumatologist for over five years. Did no test just said I had fibromyalgia. Went for a second opinion & I have had RA for a long. I thank god I went for a second opinion Just be careful when going to a doctor, would hate to see anyone go through what I did.

[Sweetheart0377]

I woke up with my mouth feeling like gandis flip flop lol x

[Hels1989 in reply to Sweetheart0377]

Ah yes I remember you saying now haha x

[Sweetheart0377]

With methotrexate it goes one of two ways , you either get on ok with it or it gives you severe side effects , mine where terrible xx

[Hels1989 in reply to Sweetheart0377]

😬 hopefully I will be ok with it xx

[Birthdaygirl]

I think Sweetheart has hit it on the head!

It seems that our bodies either love MTX and it works or it hates it and tells you! But that probably applies to all the DMARD drugs we are offered to get this disease under control. For some MTX seems to like them and is their friend and have really good results.

Hope all goes well for you and I wish you well

BG

[Birthdaygirl]

We are so different .....For me my eyes were affected by Hydroxychloroquine and it affected my reading. My optician kept checking until it got so bad I had to stop. It did actually help my joint pain so, in a way, I was reluctant to stop but I did. I was probably only on it for less than 3 months. The side effects started quite quickly.

BG

[Jules13]

I've had a bad time with this when first diagnosed. Terrible nausea and headaches. But my prescription was then reduced and a felt better. Then 4 weeks later they tried it again, 2 pills a day and it's better this time.

[AgedCrone in reply to Jules13]

Great you are being positive Jules. One day at a time & you'll be up that ladder painting in your new house!

[Hels1989 in reply to Jules13]

That's great Hun, great to hear so many people stories and what has worked for them. It's good to hear stories so I can see how things could possibly go for me. It helps keep positive I suppose xx

[Caza]

I've been taking hydroxychoroquine for 5 years now with no real problems, apart when I took a different brand. I do have my eyes checked every 9 months. I am a bit more sensitive to the sun but apart from that it works really well for me. Along with hydroxychoroquine I have a good diet take plenty of exercise & try really hard not to worry over things that I can do nothing about. Good luck I hope they work as well for you as they have for me.

[Hels1989 in reply to Caza]

Oh fabulous glad it works for you Hun. I'm just interested to see people's stories. Xxx

[Jules13 in reply to Caza]

Omg I hadn't even thought about my eyes til you mentioned it. I have started rubbing them all the time and can't bear bright light. Still in sunglasses in October in England!! That must be it.

[Caza in reply to Jules13]

Do get them check out by a qualified optician

[JEM95]

I am on both, and I have to say I suffered awful side effects with both - however I persevered and have been fairly stable for the last 18 months - enough to feel some semblance of normal life again 😀

Each time my dosage has increased I had the same side effects, but they eventually settled.

HCQ was mostly tummy aches and tummy upsets. My tum used to sound like a washing machine churning away, and I had to visit the loo all the time!

MXT was nausea, mouth ulcers, hair loss, fatigue and generally feeling crap. My LFTs are often high, but the benefits are far outweighing the side effects.

My GP worries about my LFTs but the Rheumy is far more relaxed.

My advice is give it a chance, have an open mind and hang on in there - in my case it was sooooooo worth it x

[Hels1989 in reply to JEM95]

Oh sounds fab Hun (not to begin with) and shows perseverance is key!!! So glad your feeling better now Hun xxx

[nomoreheels]

Experiences of meds are as individual as we are so really you'll never know until you've started them but here are mine. HCQ was my first DMARD, I was on it a year 400mg daily - 200mg am, 200mg pm. It worked well for about the first 9 months, by a year it wasn't. I had light sensitivity (eyes) & bad headaches at times but it worked so I donned sunglasses & stayed on it. MTX was added (tablets) 15mg - 5mg am, 5mg 2pm, 5mg pm no side effect of note, a little hair loss initially, HCQ was stopped a few weeks later. Now 8 years later I'm on MTX injections, 17.5mg, & the day after MTX day I'm just more tired & have less appetite. I'm prescribed folic acid 6 days, not MTX day.

I hope you react well to both & if you have any side effects they're minor & tolerable, best not to concentrate on side effects though, it may be you'll have none at all. 😉

[Hels1989 in reply to nomoreheels]

Thanks for your story Hun. Yes it's crazy how these drugs effect us all so so differently but it's good to see side effects people experience so if I do experience them too I have a good idea that it's down to the drugs. Knowledge and education on all this is definitely key. I'm glad your doing well on Mtx now 🙂 il be starting it in 2 weeks so let's see how it all goes xxx

[Louis-]

Hi I really hope the cocktail works for you. I am on mtx but have hadto go on injection as it hurt my tum so sorting that out and then like you will be put on another dmard. Good look everyone is different and you will know what works best for you .

[Hels1989 in reply to Louis-]

Thanks for the reply Hun, it's crazy how things work so differently for different people isn't it! I've always had what I thought is a 'strong stomache' but I guess these kind of drugs may prove that to be right or prove me wrong, we shall see. It's interesting to hear people story's! Haha I like how you said 'cocktail' good way to look at it! Hope yours are working well for you Hun xx

[AgedCrone]

I'm not having a go at you Hels, but please don't EXPECT ANY side effects.

Try to think how lucky we are in the 21st century to live in a country where we can get free at the point of need all these amazing drugs for RA!

Things may not be perfect, but on the whole we don't have to " go without" as people do in other countries to afford medical treatment!

The number of people who post that they have side effects on this site is minuscule in the grand scale of things.......horrible for them, but it's not like that for everyone..

So just pop the pills & get on with your life. You'll soon know if you are unlucky enough not to get the right meds first time round!

But hang on in there...there is light at the end of the tunnel!

Good Luck!

[Hels1989 in reply to AgedCrone]

I was just asking what people experienced that's all, I wasn't complaining. Its just a leaflet pretty much says every single thing one could suffer with as a symptom so just wondered which people had actually experienced. I'm not the kind of person to not take a treatment because I'm scared of the symptoms, I'd much rather feel better in the long run.

I got diagnosed 2 weeks ago so I was using this site to find out about things and medication I am on. I've never once implied that I don't feel lucky to be able to have this medication.

[JEM95 in reply to Hels1989]

You are right to ask, and there are plenty of friendly peeps willing to share their experiences. This place has been the biggest help for me. It's a bit of a scary ride for all of us.

I understand all the things the docs have told me, but there is no substitute for hearing from people actually sharing the journey. People can't possibly really, really understand it unless they have lived it.

Please ask away - we're all experiencing similar things, and if someones' words can help you feel more comfortable or reassured that can only be a good thing.

Keep positive! It's a poopy disease but not the end of the world x

[Hels1989 in reply to JEM95]

Thankyou so much for that Hun! That's what I was getting at, real life experiences are always gonna be better than a list of a million possible effects.

Thankyou for the support, hearing people's story's is liberating and knowing people have got to a good point in their treatment also helps so if I do happen to get a side effect I know to soldier on 🙂

Lots of love and thanks xxx

[Hidden]

I got a rash on my trunk that became increasingly severe.

[Hels1989 in reply to Hidden]

Oh dear hope your ok now!! Xx

[Cynthialcj]

Hi hels 1989I felt great, but couldnt beat the nausea .

[Hels1989 in reply to Cynthialcj]

I'm on day 2 so 4 tablets down and no symptoms yet. X

[Cynthialcj in reply to Hels1989]

Good , i felt nausea right away

[Hels1989 in reply to Cynthialcj]

Maybe I've managed to avoid it or it may strike later haha x

[helixhelix]

I've been on hydroxy for 7 years now, so that's about 5,000 tablets down. And from day one it's been fine. With MTX & Sulpha it took me a while to get used to them , but I took to hydroxy like duck to water.

[Carolsos in reply to helixhelix]

Hi I am on hydroxychloroquine 200g and mtx 20g injection and have just started leflunomide about 8 weeks ago. I was on sulfasasazine for a couple of years but it stopped working and was making me very tired. I am finding the drugs ok now and am not as tired as before.

I did not have any side effects with hydroxychloroquine and I hope you don't. But with mtx I was on the tablets and was so ill I asked to go on injections instead and what a difference!

Am hoping you will be ok with your drugs. Don't be afraid to ask anything on here, it's a brilliant site.

Take care. Carol. X

[Hels1989 in reply to Carolsos]

Thanks so much Hun it's good that I can still feel that I can ask 🙂 glad your feeling much better xxx

[Jhac27]

I've been on hydroxychloroquine about 10 years with MTX added in about 5 years ago. I sometimes get nausea and vomiting but it is absolutely worth it as my RA has gone into complete remission 😃 Just wanted to mention that my nausea is much worse with the Hydroxychloroquine brand 'quinoric'

[Hels1989 in reply to Jhac27]

Oh that's such a nice story to read!! When you say it has gone into remission do you mean you get no symptoms? Sorry still new to all of this! Mine have no brand name on them so not sure which they are x

[Jhac27 in reply to Hels1989]

I very rarely have active inflammation 😃 Some days I can forget I have RA! My CRP is often below 1 now. I spent 9 years with painful active RA which now seems like a dream - or nightmare! However I do have some joint damage so there are still some things which cause pain so I just try not to do them 🙂

If your hydroxychloroquine have no brand on them then they are generic and are not Quinoric. But it's worth noting the manufacturer and asking your pharmacist to always supply those ones. The Quinoric ones just taste so nasty !

Good luck with finding a combination and dose of DMARDS which works for you and don't give up hope x

[Hels1989 in reply to Jhac27]

Thankyou Hun xx