Hydroxychloroquine

[Susan55]

Hi, has anyone had any side effects front hydroxychloroquine please? I’ve been off all drugs for about 8 months now due to side effect on my stomach , I’ve tried methotrexate , sulfasalazine and one other which I can’t temember the name of but none of them suited me . I was diagnosed 3 yrs ago with RA but since then now suffer with IBS plus occasional migraines. Last appointment I was offered methotrexate injunctions or hydroxychloroquine but decided to decline them and see how things go , well 8 months later I’m feeling pretty awful pain is horrid I’m living on naproxen trying to work all be it only can manage 4 hr shifts as I’m a waitress so on my poor feet. I’ve got 5 lovely grandchildren bit feel I can’t enjoy them as I’m always limping and tired to be honest I’m feeling pretty low and emotional trying not to feel sorry for myself as I know from experience there’s a lot worse things to have. My mum died from dementia dad died from heart failure after a fall then brother died from lung cancer that had spread to his bones so I’ve seen the suffering and pain of these horrible things. Sorry for the long post but I’m feeling like I really need to be on some medication to get the RA under control if there is such a thing and at my lady appointment having turned down the offer of medication they kindly said if things get too bad to give them a call and they’ll start me on either methotrexate injections or hydroxychloroquine so any advice or experiences would be very welcome. Thank you

[medway-lady]

Its sad but true all drugs have side effects including Asprin and Paracetamol and I don't know why you can't tolerate so many but the RA website will be able to give you a lot of information. Its not been very long to have tried so many drugs so why were you taken off so quickly? I take Lefludamide and at first it was horrific but then it began to work and work extremely well. If I were you I'd have a long talk with your GP, RA nurse or consultant or ring the NRAS for some advice as there is no one cure all medication, and when you get another don't read the PIL if like me reading is almost garenteed to give me that effect. Best of luck. x

[Susan55 in reply to medway-lady]

Hi, thanks for the reply. I was taken off due to bad stomach problems although I was on sulfasalazine for about a yr and half but it stopped working so they upped the dose which then made the stomach issues worse although I do suffer from anxiety especially with medication which doesn’t help. The one I couldn’t remember the name of was lefludamide , I was really happy with it as I only had to take one a day and starting to feel good but then the stomach is issues started and I couldn’t leave the house so had the dose halved but still no luck.

[medway-lady in reply to Susan55]

I had that and kept on it and it did ease. Along with severe pain again it did stop after a couple of weeks. My RA nurse said try to stay with it and so glad I did.

[Susan55 in reply to medway-lady]

Mine just took me off it even though I was gutted thought I had found something that was going to work for me. Where you on 20mg a day ?

[Susan55 in reply to medway-lady]

Wondering now wether to ask to try it again maybe try 10mg for a while then up it to 20mg once I’ve gotten used to it.

[medway-lady in reply to Susan55]

yes 20 and I take at night with a good drink also Omeprazole to protect the stomach, were you given this?

[Susan55 in reply to medway-lady]

No I wasn’t given anything to protect my stomach I take something along with naproxen though which is similar to omeprazole but told to just take that alongside naproxen.

[PFKAAde in reply to Susan55]

If it ends with ‘...azole’ then it is the same class of drug (PPI) and will do the same thing.

🙏🏻

[woodstar1]

Hi I'm on hydroxychloroquine along with others and if I was you I'd definitely see what brand you have. I was on it for ages and without noticing they changed the brand and it really, really made my stomach bad!! Once I got Zentiva brand I was fine again, apparently these tablets have different fillers and can make you ill, might be worth checking and changing brands to see if that helps, it did me.

[Susan55 in reply to woodstar1]

Hi thanks for the reply , I’m not on them yet but that’s a bit of a worry.

[Susan55 in reply to woodstar1]

But good to know .

[Lomo1964]

Hello. I am on hydroxychloroquine and azathioprine because I have sensitive tummy been fine but keep getting flares so now want to add sulfasalazine which I haven’t started yet because I am anxious about a new drug. I don’t think they should take you off all medication because your joints could become damaged try hydro I believe it’s on of the gentler drugs. If don’t help maybe you would qualify for biologic drugs. Xx

[Susan55 in reply to Lomo1964]

Hi, thank you for your reply. I totally understand your anxiety to new drugs as I’m the same I dread taking them which is why I chose to stay off them and see how things go but unfortunately the damage is getting worse and I’m in a lot of pain which is causing me to feel very low in mood.

[Lomo1964 in reply to Susan55]

I totally understand give them a go you don’t want your joint to become damaged let us know how you get on. X

[Susan55 in reply to Lomo1964]

I certainly will let you know it’s very helpful to have something like this to get a perspective of other peoples experiences. Unfortunately I don’t qualify for biological drugs yet as the I only have hands and feet effected and they don’t count feet in with the assessment so I’ve not got enough points apparently.

[Lomo1964 in reply to Susan55]

It is nice to speak to people who have been through it a few years ago I wouldn’t even take a paracetamol for a headache and all of a sudden became very poorly I was so frightened I thought I was dying then diagnosed with ra and my liver readings were very high too I was so frightened but after a few weeks of just looking at my tablets I started taking them but I didn’t know how I was ever going to feel better. I still am very tired and do get pain hence why I have to start taking another tablet which has been sitting on my shelf for two weeks but all in all there is a light at the end of the tunnel. I am a lot better than I was and hearing that people do still live a relatively normal long life help just keep as healthy as you can. Look after yourself because you are important. Good luck xxx

[Caza]

I’ve been taking hydroxychoroquine for five yrs now. They can affect your eyes so you need to have to get your eyes checked before starting them & then every 9-12 months. I’m more sun sensitive so I use sun cream & don’t stay in the sun for to long. It’s been great for me. I don’t take any other meds.

[Susan55 in reply to Caza]

Hi thank you for your reply. That makes me feel a little less anxious about starting on them but also have the choice of methotrexate injections.

[wishbone]

I've been taking 2 x 200mg of hydroxychloroquine daily for a couple of years with no side effects of note. According to my rheumy it is a mild drug, which won't improve someone's RA, but can stop or slow down progression of the disease. I can't take other drugs, though that may change soon, and It has helped me, but I do need to take pain killers with it.

[Susan55 in reply to wishbone]

Hi thank you for your reply. I too was told it was one of the milder drugs. I’ve rang for an appointment as my next one is a yr away.

[wishbone in reply to Susan55]

Good luck.

[lisac123]

Hi my husband had the same issue. He was moved to the Methetrexate injections and the stomach problems went away. Hope you get sorted.

[Susan55 in reply to lisac123]

Hi thanks for your reply very interesting that your husbands stomach issues went away once on methotrexate injections. I’ve only just got my stomach back to near normal but now have IBS so have to be careful what I eat.

[lisac123 in reply to Susan55]

Hopefully they can find something suitable for you. I see the pain from an outsiders view and it's horrible. The Methotrexate alone is not working so they are adding a biologic injection too.

[Julies49]

I tried all sorts but had to stop because of stomach issues and allergies but I’ve been fine on Methotrexate injections had them for a few years now

[Susan55 in reply to Julies49]

Hi thanks for the reply good to know you’ve been fine with methotrexate injections , is it a weekly injection?

[Julies49 in reply to Susan55]

Yes I have mine on Sunday before bed I found this the best day for me hope you can find medication to suit you

[Joy_1]

Hi

I have found HCQ a walk in the park compared to MTX.

My only issue was having to visit the loo twice a day instead of the usual once a day. Folk on the Forum talked about splitting the dose. So I take 200mg with my breakfast and 200mg with my dinner now and the extra visit to the loo stopped after about a week.

Sorry for the 'graphic' details!

Joy

[Susan55 in reply to Joy_1]

Thanks for the reply and the advice Joy.

[Jste]

I have been on plaquenil for 9 months and it really has helped my fatigue, brain fog and overall achiness. I will warn you it may take a while to kick in.....my doctor told me to be patient. After three to four months I noticed that I was feeling much better. I have had a bit of itchiness on my scalp and back , but again I used anti itch cream and it went away. Good luck and try to allow time for it to be fully effective.

[Susan55 in reply to Jste]

That’s good to know Jste, thank you for replying. Did you try anything else before plaquenil?

[Jste]

No...we just started with that. The first time I only tried a month and gave up. The second time I stuck with it.