Log in
NRAS
24,239 members27,991 posts

Well much debating I have had my first Hydroxychloroquine tablet

I have been really bad since Thursday, feel it in every joint, couldn't get up the stairs Friday had to walk on all fours.

so I still waiting for hosptail re eyes but had optician look at them.

so hoping I have no problems, just took the first tablet even with the nagtive thread on here yesterday about itchy skin.

so is there any tips you guys can give me?

I managed to get the zentiva brand, that was hard as we live in wales, so all meds come from Bristol

sometime I get put off with drugs because you see people not seeming any better and more having to be added, and others for side effects,

I had been on the S one that made me so ill, but I know I can't go on like this and need help, so hopfully fingers crossed Hydroxychloroquine will do that for me

please excuse spelling

29 Replies
oldestnewest

I'm sure you understand that not every drug suits everyone - & if a drug really disagrees with someone they are far more likely to post on here....because they are so disappointed.

I must agree we rarely see posts saying what a wonderful drug X,Y,Z is.

I think that is because if a drug works we happily get on with our lives & don't bother to post here.

So try to ignore what happens to other people ...& concentrate on looking forward to the Hydroxy working well for you.

You know that eventually most of us find the drug that will work for us.

However, realistically we all know most drugs don't work overnight......it's not unusual for a drug to take 3/6 months to work & then you will be able to go forward & start doing all the things you want to do.

Fingers crossed Hydroxy is the right drug for you.

3 likes
Reply

Ahh thank you agaedcrone,

Reply

Onwards & upwards V!

Reply

I've been on hydroxy now for 11 days and haven't had any adverse reaction *touches wood* Hope it's the one for both of us :)

1 like
Reply

Dear VeronicaF

Well done

Glad you did it

You never know it may give you absolute benefit this time

I have definitely known people who have benefited from it.

I too have been on all fours to be mobile so I understand how utterly rubbish it is.

Take care and wishing you all the very best

2 likes
Reply

Hi Veronica - I too am walking around the house like a cat due to excruciating pain in my feet ☹️ brings tears to my eyes quiet frankly.

It’s such a frustrating feeling when you are left wondering, was it the food or light foot exercises I did yesterday. I couldn’t venture to work today, and felt pretty glum as taking biologics since August and wondering what's the point right now as doesn't seem to be helping. In fact I keep wondering is it the biologic that is making things worse. I am praying things heals as I must go in tomorrow.

Now I use to take hydroxy and felt it did help me somewhat, it was combined with mtx, however, was swiftly put onto biologics. I really hope it works for you. Take care, Hessie

1 like
Reply

Well done! That is such a big step for you, so you should congratulate yourself hugely for jumping in the swimming pool. I really, really hope it works for you.

1 like
Reply

I also live in Wales, so going by what you say about the difficulty in obtaining Zentiva then it's highly likely that I've been mistaken thinking that Teva and Zentiva were the same stuff.

Anyway, hope hydroxy does the trick for you. It certainly helped me get through a rough patch lasting a couple of years when I was taking it.

1 like
Reply

I would say well done but you promised me 10 days ago you were starting them the following day! Only kidding. I hope it's the start of something good for you. Remember though you won't feel better straight away, as with all DMARDs it's slow acting but you should feel some positive effects before the 12 weeks or so it takes to be fully effective.

Remember as well that even though meds can come with side effects you're not guaranteed to have any, or if you do they're more likely to be the more common & copeable ones. Also forums are generally used by people having problems, so the percentage of the ones you've read here really is very small, minute, diddy, few, not many compared to how many take HCQ without any problem at all.

I took HCQ for the first year following diagnosis. I had headaches to start with & light sensitivity but I just wore sunglasses & all was well, I responded very well & stayed on it with no further issues. I had to stop wearing contact lenses because I had dry eyes but again it was no real problem, I just used comfort drops & saw the Opthalmologist in hospital.

1 like
Reply

tee hee hee nomoreheels

this is how it went to going on tablets

I felt last few days as if I had flu, hips, knees didn't work and every step was hard to take, in bed every movement was very painful. my elbows killing, fingers bad swelling as if they were going to explode, I have not had swelling before now.

then my neck started because of my shoulders, and I was thinking, I need to be PTS, what was the point to life like this

then I starting knowing a 100 perecent there is no mistake I do have RA

then I thought the tablets can't be any worse than this

my hubby has a bad back and he takes tablets and has done for years, so I got him to read side effects to his, pretty scary they read and he has been on them for years

so that helped me

thanks everyone , please send me positive thoughts xxxxxxxxxxxxxxxxxxx

ps even diet didn't help, nothing did

1 like
Reply

I suppose if that's what it took then that's what it took. It's just a shame you'd to be floored to have the proof. It's true, all meds come with a raft of side effects listed in the Patient Information Leaflet but the drug companies are legally required to list everything found in all 3, sometimes 4 clinical trial stages. Your hubby is proof it doesn't mean you'll necessarily have any of them. A healthy diet can help, elimination diets mehhh. I generally follow a Mediterranean type diet, the only one that is recommended by NICE, NRAS & other Rheumatology charities & sites. As long as you eat healthily, avoid processed foods as much as you can & anything which causes you inflammation & drink plenty of water you should find you will be ok.

Onwards & upwards. 😉

Reply

thank you nomoreheel

I think its a hard thing to get your head round

I have always been the strong one and the well one and its hard to come to terms with it even though you know something wrong.

and hard to think there is no easy fix

Reply

I don't know, because we're all different & have our own ways. I was the opposite, I was just happy for a name to something that was causing me so much pain I had no control over my tears! Then when I was given something that worked it mattered even less, I had some control. As I say, we're all different. I hope it works as well for you as those two tablets, plus steroids & a couple of NSAIDs worked for me in the early months.

1 like
Reply

I got steroids to have, but scared to take them, as so many people on here strugle to come off them, and again worried about hair, silly I know but am going on steroids

I just didn't like the diagnoses at all

painkillers cause stomach problem for me

at moment I have heated been bag over my shoulders, feet in eptom salts, hot water bottle behind my back and one for comfort on my lap

look a right state,

Reply

If you take them short term I found they got me over that hump. I only ever used to be prescribed them a month at a time but I happened to be on them when I was eventually transferred to another Rheumy when we returned to the UK, when I really needed them in the mess I was in. I still needed that control so still took them by them time I saw her again & so I remained on them. Seems she's happy for me to remain on low dose given I've attempted tapering & failed, I call it lazy if I'm honest as she knows now I've tried 4 DMARDs & only one works (or rather hasn't failed me). I'm really tempted to try again & present the me without them, my h didn't think much to that but I've now left it too late anyway as I see her in Jan.

So my advice is ensure you only take short courses, they're most useful & safer, it used to work for me. I used to see my Consultant every 3 months so he had more control over how my RD progressed (or didn't). As I'm only seen annually now maybe at 6 months if I don't see a Registrar, there's not the same control so less chance of meds being increased/decreased in dose according to how I am.

By the way, they've not affected my hair in any way.

1 like
Reply

I think they are 5 mgs 4 times a day, two boxes, I will see how I go, if I keep feeling sh-t I will take them

thank you x

1 like
Reply

You're welcome. I only take 2mg once a day. You'll take yours as directed of course. Hope you don't feel rubbish enough to need them.

1 like
Reply

Veronica I have been taking hydroxy for 20+ years and steroids for nearly that long too with no side effects from either. Trying to reduce the last few mg of steroids now but only because the benepali is helping so much I’d like to be taking less tablets if possible. Well done for taking the plunge and I hope you get the benefit of it soon.

Reply

thank you kitty, its really helps me what your saying, a I feel really depressed and down tonight as if this is how its going to be my life full of pain in every joint, feeling a bit sorry for myself tonight

so thank you very much kitty

1 like
Reply

VeronicaF I've been on steroids a while now and am tapering off them. So long as you keep the course short you will be fine, they will help in the short term until the HCQ begins to work. I hope you feel better soon.

1 like
Reply

Hi!

well done on taking that step and swallowing that first tablet, I think I waited about two weeks after collecting my prescription to take my first dose of Hydroxy and I was so nervous, never having been on long term medication before... I started taking it just after the Easter bank holiday and it has calmed my symptoms no end.

I take 200mg morning and night with my breakfast and evening meal, and I have had no noticeable side effects this far, only the benefits.

This and ibroprofen are all I currently take, and the last big flare I had was just before that Easter weekend when I started the meds, I slowly noticed things calming and less morning pain week by week and I’m now just hoping this continues for a good while yet! I get what I would call “niggles” in my hand joints, a little dead and stiff in mornings but it doesn’t last long now, and unfortunately my feet were already effected before I got my diagnosis so they are a little deformed but there’s worse off than me!

I never intended to make such a long post here but I hope you’re a little reassured by it, all the best to you it’s one of the milder DMARDS to be on, and I hope you reap it’s benefits as I have xxx

1 like
Reply

thank you Ssmart, your really helping me thank you, its hard when your in so much pain and look half the person you were to see the light at the end of the tunnel

and you can't help think is there any point to life anymore, and think of my husband, how much better off he be with someone else who isn't going to go like me.

but I know I got to keep strong, and reading your posts, seeing your getting better keeps me strong, thank you from bottom of my heart x

1 like
Reply

well five days in and I been feeling less pain in the day its too early days with that but its back by evening, but today I felt really dizzy a dizzy moment and had to lie down fell a sleep,and just had the most horrendous upset stomach ( sorry to much information)

I hope that's all I have?? I had the same horrendous stomach on the S drug too

I will plough through it in the hope I get to the other side

Reply

It sounds rather than side effects it's just your body having a go at a newly introduced med, I've heard of others feeling similar when starting HCQ. Hang on in & hopefully things will ease but obviously if they worsen make your Rheumy's team aware. It is possible you're feeling some positive effects even though it can take around 12 weeks to be fully effective.

Just a thought, I may have asked or mentioned this before but if you're taking an NSAID & more importantly a PPI (tum protector, omeprazole or similar) don't take the both together, leave about 3 hours.

Hope things improve. x

1 like
Reply

thank you nomoreheels, my tummy is fine now, just that once and fine now, I have worked it out, I eat most of my meal -breakfast have tablet then eat the little of the rest that's left-rather than other way round, and that stopped it.

no all I take is CBD oil and voltarol that's it

Reply

Hey Veronica - I am sure going through what you are - doing the cat walk thing as my feet are soooo inflamed 😬 ouch. I was told to double up my meds - inflammation markers are worse 😱.... I did use to take hydroxy and to be honest I felt it did help. But then I kept thinking I was getting more floaters... plus he changed my meds to biologics. Hope you are on the mend.

1 like
Reply

I haven't had mine long, sometimes I think its working already and other times not, yes got the same feet

what are floaters???

Reply

Here you go specsavers.co.uk/eye-health... worth a read

1 like
Reply

that's bad hessie5, how long were you on it for, I was meant to have hosptail check them but I am still waiting, so went to our option and they said my eyes were fine to go on it, I had a bad weekend a couple of weeks ago where I couldn't even get upstairs,so couldn't wait, so just took them

Reply

You may also like...