Anyone else had this ? : The only thing that has... - LUPUS UK

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Anyone else had this ?

LouLamb profile image
20 Replies

The only thing that has changed for me is that I started hydroxy on Saturday . I feel worse than I did this morning . Looks like no hope for change tomorrow . I have to go to work tomorrow can't afford to lose the money .

Has anyone had this where hydroxy sends you backwards instead of forward . I have never had a flare up like this since finding out I had lupus and arthritis .

It's bringing back all the emotions I had from pre diagnosis . Can't live how I was before .

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LouLamb profile image
LouLamb
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20 Replies
Penguintaz profile image
Penguintaz

Hi Lou,

This is a shame. If you are really delighted sick you need to let work know, forcing yourself to work may make things worse. If things get really bad call your Rheumy in regards to advice for the medicine. Just go slow and look after yourself

Lupiknits profile image
Lupiknits in reply toPenguintaz

I agree with Penguintaz, Lou, about contacting rheumy to check whether starting hydroxy could be causing this. I hope you get some rest tonight x

LouLamb profile image
LouLamb in reply toPenguintaz

I haven't gone in today again . I am going to try tomorrow . Going to try for a Doctors appointment today .

kt11 profile image
kt11 in reply toLouLamb

Are you taking quinoric? Xx

LouLamb profile image
LouLamb in reply tokt11

Just hydroxy

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply toLouLamb

Does it say what brand the hydroxychloroquine is? Is it made by Quinoric, Zentiva or Blackrock Pharmaceuticals. Some people respond differently to each. You can read more about this at lupusuk.org.uk/hydroxychlor...

LouLamb profile image
LouLamb in reply toPaul_Howard

I have a look later for the brand when I take it tonight

Lupiknits profile image
Lupiknits

Let us know Lou x

LouLamb profile image
LouLamb in reply toLupiknits

Went to the doctors she said it has nothing to do with the tablet . ( I disagree ) . She it's just the lupus flaring up . It would have happened anyway . She told me to start taking my vitamin d . Got blood test tomorrow after noon .

Going to ring work and tell them I'll be back on Monday . I need to rest and not worry

Penguintaz profile image
Penguintaz in reply toLouLamb

Ah, that is not great. If it started when you started the medicine, it could have been caused by the medication, no?

I hope your results come back soon and you are feeling better by Monday. Rest well X

VanK profile image
VanK

Hi LouLamb sorry to hear you're not feeling good, sure you know your body best. Do you know what kind of hydroxy you are taking? I just started taking a month or so ago... had very bad side effects from the first kind I received (by Bristol Labs) now on one by Zentiva, which, touch wood I've had zero side effects from. Can you ask your rheumy about switching? Also, when I spoke to mine she said she would switch me to another anti-malarial if this one didn't work, so you have options.

Rest well & look after yourself x

LouLamb profile image
LouLamb in reply toVanK

My gp told me to get in touch with the specialist nurse at the hospital .

I was always thought when u started a new tablet u wear meant to have regular blood test ?

Cas70 profile image
Cas70

It can't be Hydroxy it takes weeks to kick in. You only need testing every few months by blood test. It sounds more like a flare. Flares occur when we get over anxious so it is a vicious circle. Take B12 with you Vit D and you will improve. Buy them in spray firm if you can they work faster - good luck.

LouLamb profile image
LouLamb in reply toCas70

I've never had anything like this before . Honestly I've had pain everyday which I got use to which is my normal pain . The pain I am having is what I had pre diagnosis . Every time I take a medication it seems to make me worse not better

GloomyEeyore profile image
GloomyEeyore

I was started on Hydroxychloroquine two years ago. The first time it was dispensed I was given the Quinoric brand. I didn't react well to that at all. Dizzy, nausea, stomach cramps and the joint pain was terrible. I spoke to my GP and he wrote another prescription saying I had to be given the Zentiva brand. I was fine taking it and pleased to say I still am. Different brands of the same medication can cause side effects so it may be worth talking to your GP about trying a different brand. Xx

Lupiknits profile image
Lupiknits

Sorry LouLamb that you're in a bit of a "might be, might not be" situation. I think checking the brand of hydroxy is worth trying, though. After I was on hydroxy for some months I was dispensed with the brand a lot of us react to. I've never ever had a problem with different brands of generics, and, to be honest, was suspicious of those that did. Changed my mind. Whatever they put in fillers between brands definitely caused a reaction with me.

Rest well (easier said than done) x

LouLamb profile image
LouLamb in reply toLupiknits

It's getting better not a lot . One minute it's pains in my legs then back then shoulders then everywhere . I rang work told them I'll be on Monday . I have a driving lesson tomorrow . I've decided not to cancel it . I said to my mum I need to know that I'm able to drive when having a flare . It will happen again in the future . I said to her it better to see if I can drive whilst like this while I am still learning

webar4780 profile image
webar4780

Like any medication, hydroxychloriquine suits some people, not others.

I hoped it would be the answer to all of my symptoms. I heard how safe it was. However, I tolerated it for 4 months before I ditched it.

During those 4 months, I developed more aches and pains, felt low. I suffered 2 bouts of flu symptoms. Tried self help, honey lemon, rest.... eventually had to see GP. Diagnosed chest, ear, sinus infections. Each episode lasted a month.

I decided to stop hydroxychloriquine when the hospital care worker phoned telling me my neutrophils and sodium blood levels were low and I needed another blood test. The blood form nor an earlier consultant appointment, I was offered, never arrived.

I have felt better off hydroxychloriquine but that may be because the drug helped despite taking it for a short time.

Only you can decide if/when to stop or continuing to take meds.

On another occasion, I may decide to restart hydroxychloriquine. Our decisions are based on our health issues and choices available at certain times.

I wish you well.

LouLamb profile image
LouLamb in reply towebar4780

My pains are nearly back to my normal pains . So I'll keep trying it for now until I get any more problems . It hasn't made anything better yet

webar4780 profile image
webar4780

Good luck. Many people say it takes 6 months on average, to feel much better.

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