Hydroxychloroquine Reaction possibly??☹️ - LUPUS UK

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Hydroxychloroquine Reaction possibly??☹️

weathervane profile image
17 Replies

Hi everyone, im feeling a bit low lately , my joints (hips and hands) are more inflammed, lymph nodes sore again , head is foggy and increased fatigue. I am due 3rd rituximab infusion the end of july so are the increased symptoms because im on the run down to that ?? I have also developed a rash on right hand up my forearm , increased eye burning ( i use hylo -forte) and a wavy head , is this a reaction toHydroxychloroquine which i have been taking for 18 months or all part and parcel of a flare up ? Im getting a steroid jab in sacroiliac joint next week and then going on holiday the middle of july, I would love a bit more energy for that but will probably be running on empty until rituximab takes effect ☹️. Best wishes to all 🌸🌸

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weathervane
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17 Replies

So sorry that you're feeling low and in pain W. Can't comment on the Hydroxy aspect apart from that I had to stop taking it when facial hives and angioderma started after about 18 months on it. Sounds more flare like to me re the pain and other symptoms. Hugs TX

weathervane profile image
weathervane in reply to

Hi TW , I think it probably is a flare up, the rash is just across knuckles and up one arm and looks a bit like a heat rash rather than hives . Just feeling a bit ☹️Rather than 😀 , cant even take chocolate as a treat as its causing heatburn 😂. Thanks for hugs xx

in reply toweathervane

Oh dear W - you do sound out of sorts. Chocolate? What's that lol?! X

Wolf1 profile image
Wolf1

Hi

I was on Hydroxychloroquine for a month- and woke up covered in itchy rash all over!! They thought it was because I was reducing my steroids. But when they were increased, the rash just got worse. I ended up having skin biopsy. Confined lupus and ?? Drug allergy. I was meant to re start Hydroxychloroquine, but I havnt as I too concerned. Xx

weathervane profile image
weathervane

Thanks wolf , the rash is quite localised so may not be drug then . Is there an alternative to hydroxy that you can try ? It is a real trial and error thing isnt it . Best wishes xx

Wolf1 profile image
Wolf1 in reply toweathervane

They wanted me to re start it!! I havnt as too scared to. Just still on azithoprine, steroids xx

weathervane profile image
weathervane in reply toWolf1

The rash i had is now gone and other symptoms have reduced , it may just have been a short term flare .i hope you decide the right thing to do with your meds xx

misty14 profile image
misty14

Hi weathervane

I reckon your suffering because your needing the next infusion which is end July!. Difficult to decide though!. Just want to wish you luck for your injection this week into sacroiliac joint!. Painful they are but I hope it gives you relief!. I'm having my injections tomorrow and can't wait for relief!. Keep us posted. X

weathervane profile image
weathervane in reply tomisty14

Thanks misty , I think you are probably right , you are more prone to inflammation when you have an autoimmune disease and mine are definitely flaring ! I have had aches and pains for so long now that if they disappeared i think id miss them ha ha !! I hope your injections go well tomorrow and you get relief , i dont find them too bad , this is the second one for the sacroiliac and it did work well the last time . Best wishes let us know how it goes xx

misty14 profile image
misty14 in reply toweathervane

Hi weathervane

Somehow, i don't think you would miss the aches if they went!. It is difficult though to know whether symptoms are flare or drug reaction or infection. When do you have your injection?. Glad it helps Thanks for your good wishes for mine will update. You let us know how you get on too. X

weathervane profile image
weathervane in reply tomisty14

I get ( hopefully) a steroid injection on Friday and then 28th july my 3rd rituximab infusion. Heading to dentist shortly to get broken tooth fixed , I feeling like im falling to bits at the moment. Good luck with your injection as well . Best wishes xxx

misty14 profile image
misty14 in reply toweathervane

Good luck for dentist weathervane, it's all go isn't it?. X

weathervane profile image
weathervane in reply tomisty14

How did your injections go today?

misty14 profile image
misty14 in reply toweathervane

Really good thanks weathervane, getting good relief!. Good luck for yours on Friday and how's your tooth?. Hope sorted ok. X

weathervane profile image
weathervane in reply tomisty14

Not a bit of if !! Its going to be a big job so have to go back a couple of times . I hate the dentist as my jaw gets sore keeping it open so long , also mouth very dry ☹️☹️ . Glad you got sorted today , hope it last for a while xx

misty14 profile image
misty14 in reply toweathervane

So sorry your tooth is complicated weathervane. We never do things easily with having health problems. I don't like the dentist either and have same jaw and dry mouth problems. I use Biotene toothpaste for dry mouth. It's great as also anti bacterial but more expensive. You can buy it in boots, also a mouthwash. Good luck with it all. Keep us posted. X

weathervane profile image
weathervane in reply tomisty14

Use the biotene mouthwash but got told off for not using duraphat tooth paste , its high fluoride to protect delicate teeth . Ive been using sensodine ☹️

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