Hydrocloroquine stopped working: My wife has been... - LUPUS UK

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Hydrocloroquine stopped working

jimbo1605 profile image
6 Replies

My wife has been on Hydro for around 2 months now and it really has made a difference - less fatigue, better breathing, fewer pains, better sleep. But about a week ago all of her old symptoms have returned.

Anybody else experienced this ?

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jimbo1605 profile image
jimbo1605
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6 Replies
Lupiknits profile image
Lupiknits

I haven't, but the hydroxy took a lot longer until I noticed any results. I don't know what your wife's dose is, but I'm sure a rheumy could advise best.

Puska profile image
Puska

I didn't notice that much effect until around the 3rd month. It's early days.

Silvergilt profile image
Silvergilt

I've had this happen with some medications. I didn't find this particular med did much good for me personally - moderate improvement then my levels raised high again and side effects kicked in. But it was a necessary step for me to take to get on the biologics tier by giving it a trial. Sometimes medications just don't work for some folk and you have to try something else. Could your wife get a blood test done to see how her CRP/ANA levels are doing? It might be a flare or it might be hydro just isn't right for her.

whisperit profile image
whisperit

Hello jimbo1605,

My guess would be that most people here get good and bad periods as part of their disease process.

As others have mentioned, most of us were told that hydorxy takes a few months before it has a significant effect - my rheumy said it would be 3-4 months.

So I wonder if the improvement your wife has felt was nothing to do with the hydroxy, but instead down to something else - maybe some other, quicker-acting med that she is taking, maybe just a random, temporary calming of her disease?

I'm no expert, though. It would be a good thing to ask your specialist rheumy nurse about - if you have one?x

amygene0522 profile image
amygene0522

I was diagnosed with Sjogren's about 20yrs ago and I can attest to the ups and downs. Most days I feel great with the exception of never feeling rested (I wish there was a pill for that). I do have bad days and just chalk them up to having a flare up and hopefully, the next day will be better. I have had flare-ups last up to a week and you just have to get through it. I am only 40 yrs old and living with this so young really can seem unfair at times but it has really taught me to work through it because it is worth it.

jimbo1605 profile image
jimbo1605 in reply toamygene0522

Thanks for your reply.

My wife has had this since february and it has turned her, and to a significantly lesser extent my, life upside down. It looks as though it was a urinary tract infections ; she had many with this condition. So things are on the up again but not sure how up they will go.

One great thing this has taught us is to make the best of what you are given each day - sorry sounds a bit religious, but echoes your thoughts. On behalf of my wife (pooh bear) and myself good luck to you and thank you for your post.

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