Hydroxychloroquine: Hey there, can anyone give me some... - NRAS

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Hydroxychloroquine

Milo247
Milo247
36 Replies

Hey there, can anyone give me some feedback on how you have reacted/responded to this drug, I'm avoiding starting it.

36 Replies
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Jess_doyle

I’ve been on it for 10 years, I haven’t had really any of the side effects my eyes have been good, I been put down a dose now because u can get immune to it. Some people do get the side effects it’s just have to see how it goes for your self, I personally haven’t had any bad reports about it, without it I wouldn’t be able to do a lot.

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Milo247
Milo247
in reply to Jess_doyle

Thank you Jess_doyle

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popsmith1874

Hi it didn't make any difference to me and binned it

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wishbone

I've been taking it for a couple of years and think it might be helping cause some acid reflux issues, but they're not too bad at the mo. It's less toxic than many other RD meds, which unfortunately means that it's usually less effective too. However, a big plus for my condition is that it has little effect on the immune system, which is a must for me, and is the only RD med I can take. It doesn't work as good as other stronger RD meds that I used to take, but it does help with my RA and gives me some mobility. My rheumy told me that hydroxy will not put the disease into remission but can stop it progressing, or at least slow things up. Keeping all digits crossed that my stomach issues remain stable and I don't get immune to it. If I do then I'm going to be in big trouble!

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Milo247
Milo247
in reply to wishbone

Thank you Wishbone, I appreciate your response.

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sylvi

I have never had any side effects from this drug.xxxxx

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helixhelix

It found starting this drug easiest of all of them.. no side effects, no problems with digestion, nothing....and it did help the RA. It is usually described as the mildest of the RA drugs. I've been on it for 7 years now, and get my eyes checked once a year just in case but again no problems.

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wishbone
wishbone
in reply to helixhelix

7 years and still working!...I'll be pleased if it lasts that long for me.

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Matilda_1922

I was in hydroxychloroquin for about a year Which was added alongside Mxt. Had no initial problem. Had an eye test just before starting it. Approx 7 months noticed some visual problems. Had eye test sight change due to ageing rather than the hydroxychloroquin. About a year started to have migraines. Never had them before. Eventually hydroxychloroquin stopped migraines stopped.

This is my experience of hydroxychloroquin

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Tinkerbell5

I suffered migraines to on this drug

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Jess_doyle

I do get head aches just never put I down to the medication thought it came with everything else lol

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hatshepsut

No problems for me too. I have my eyes checked regularly, at least once a year. Compared to the other meds, it has few side effects. Certainly no reason for worrying about trying it.

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Milo247
Milo247
in reply to hatshepsut

Thank you hatshepsut

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allanah

Been a great drug for me. Sickly for two or three days but that passed. I get my eye check yearly. And it has given me more mobility !

Worth a Try,, if you read side effects of all drugs you probably wpuldwould be worried about them all. I found this the easiest dmard to take xxx good luck

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Milo247
Milo247
in reply to allanah

Thank you allanah

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Dianne123

Been on it over 30 years and never had any problems. Have extensive eye testing done at hospital once a year. Has helped my RA.

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Twitty999

This is all quite reassuring for me as im being given this next week alongside MTX which im hoping to change from 25g tablets to injections. Then hoping for better results than im having now!.

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juneann

Thirteen years still taking it. After all the other stuff I see Hydto like Parscetamol now

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Barbara17

I’ve been on hydroxychloroquine for two years now. No problems and it does help. Only thing I would add is that different brands seem to affect different people. I can only tolerate Zentiva brand so it might be worth trying a different make if you react badly to the one you’re prescribed.

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Matilda_1922

This is interesting I did have change of brands during the time I was on hydroxychloroquin but can’t say when as too far away to remember. All I know is I felt a lot better now I’m off it.

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Milo247
Milo247
in reply to Barbara17

Thank you Barbara17, I will keep that in mind, it is true for me with Prednisone.

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Mandalou

Been on Hydroxy for two years now, have the usual eye tests done of course.

I'm allergic to it and it gives me a horrendous all over itch so I have to take an antihistamine alongside it.

Morning and night always after food.

Can take more antihistamine if I need to if I get a breakthrough roving itch, one minute my forehead, one minute the back of my knee the next my shin then my fore arm, you get the picture!

As I couldn't tolerate any other DMARDS the Hydroxy seems to work well alongside Benepali.

Plus as it's an anti malarial it us very handy as I travel to Africa a fair bit with my job.

Good luck with your drug choices.

Mx

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SunshineInGA

I too have the horrendous itching & burning with the drug. I've recently lowered the dose & have started taking an antihistamine with it too as others said this helps. My itching runs down both arms from the hand to the elbow & can last anywhere from 15-20 minutes up to over an hour. Normally, if it only hits one arm, it doesn't last as long as it would if it hits both arms. The only other thing that gives me any relief when it happens is to keep rags in my freezer & wrap them around the inflamed areas. Trying to get FMLA at work right now so I can log off when it happens. This scares me & saddens me as it was the only drug that seemed to help my discoid Lupus. :( Has anyone seen that it would eventually stop doing this after taking it for a long period of time? I have only been on it for about 3 months. Thanks a bunch!

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Mandalou

Hi Sunshine

I would report your side effects to your health care team its important you dont just try and deal with it yourself.

Here in the uk we also have a system where we can report side effects so data is collated to help people.

I take my certrazine alongside my two doses of hydroxychloroquine without fail plus 10mg Certrazine in the middle of the day.

I also believe from personal experience that I need to take these doses of antihistamine prophylacticly , keeping the itch at bay rather than to treat it when it occurs if that makes sense?

I totally agree that cold water or ice or chilled cloths is the only thing that relieves the agony.

I run my arms under the cold tap.

I find showering can set the itch off as well.

I hope you get some relief from your Lupus Sunshine.

Take care

Mx

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SunshineInGA

Thank you so much for your reply. My dermatologist knows of the side effects & I have started taking the antihistamine every morning as well. I take Allegra. Certrazine is basically Zyrtec, correct?

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Mandalou

Yep, or Benadryl in some cases. Certrazine Hydrochloride or Certrazine Dihydrochloride is the active ingredient marketed under different brand names in different countries.

My Rheumatologist said the benefits of Hydroxychloroquine outweigh the itching so Im willing to cope with it.

Dont forget to get your eyes checked once a year while on Hydroxy too.

Mx

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SunshineInGA

Absolutely! Did the first tests 2 weeks after I started the Hydrochloride. Automatically scheduled for next year. :) Also keeping a check on my kidneys.

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Cassey00

I did not like that drug. It irritated my mood and I always had nausea and vomiting.

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Milo247
Milo247
in reply to Cassey00

Thank you Cassey00

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Kikideelili

Hi Milo

No one likes to take drugs but unfortunately we have an autoimmune disease that will attack and damage our joints if we don’t suppress the immune system. I was on hydroxy for years along side 2 other suppressants and did not experience any side effects.

If you are worried talk to your pharmacist or rheum team.

Kiki

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Milo247
Milo247
in reply to Kikideelili

Hi Kiki, thank you I appreciate your response and will be brave!

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Jules13

I started it 3 months ago. Was supposed to take 1 in morning and 1 at night. I had a few side effects... nausea and headaches so nurse told me to cut back to just 1 a day. I did that for 6 weeks and then went back up to full dose. Now I’m fine with it.

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Milo247

Hi all really appreciate the feedback very helpful, Milo x

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snis

Hi Milo,I have been offered this too and have decided NOT to take it!!!!!!!...I have been on Methotrexate for 4 years had to come off due to repeated chest infections.Then I started

Sulfasalazine I was so ill had to stop that .I am now on a course of Steroids for a while.I do not want the risk of having BLIND SPOTS which are permanent even though the risk is small.I need to be able to drive .It is very difficult re these meds we are offered !The doctors do their best .it is their job to give us meds.But it is our bodies that take the risk eh !!But this HYDROXYCHLOROQUINE !!!I am wary ...I know there are bad side effects with the others but we have a warning with them .Take care .x

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VeronicaF

I was very scared to take this drug

until I couldn't walk upstairs or get out of the bath, and that scared me more, its 9 weeks on and feel its starting to work, although still have a few niggles now and then in the day but its not meant to be fully effective until 12 weeks going on to 6 months

I am having stomach issues at the moment

it could be a bug but also the meds

I went to the doctors today, as I been having impacked constipation and gripping stomach ache

so he sent me to the hosptail today to check kidneys and liver is okay. and a full blood count

so at the moment it might be a bug or might be me reacting to meds??

but don't be put off I am not, I am keeping fingers crossed its not meds and just a bug as I don't fancy going on the others

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VeronicaF

it must have been a bug, as no stomach ache today and have a bit of upset tummy, so it wasn't the drug

and its the first bug illness I have had in over a year, so its good to know I am started to catch bugs

also drug is starting to work a few niggly bits but so far so good

always scared to count my chickens before there hatched but hope it helps you decide to start the drug

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