Hey all : Hey all, I just wanted to thank you guys... - LUPUS UK

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Hey all

Haylz2109 profile image
Haylz2109
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Hey all, I just wanted to thank you guys for all the help you have given its really been appreciated πŸ’•

Found out after 2 weeks of having really bad symptoms, low grade fever, sickness, facial rashes, severe joint pain and more that I'm currently in a flare.

Can not fault my new rheumatologist though as she rang me straight away and explained I'm in a flare and sorted out the new medication of hydroxychloroquine there and then and also put me on a 6 week course of steroids to try and help the current flare whilst the new medication has time to work!

Sorry for the ramble but just had such a rough couple of weeks and you guys are the only people I know would understand.

Here's to hoping things are on the up from here 😊 thanks for reading πŸ’•

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Haylz2109
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Spanielmadlady profile image
Spanielmadlady

Really pleased you got some help quickly and I hope the hcq helps.dont forget to have your eyes tested xxx

Haylz2109 profile image
Haylz2109β€’ in reply toSpanielmadlady

Thank you πŸ₯° yes fingers crossed now! Yes I've just had them checked recently and had the necessary scans so they can check them again when needed for comparison! Xx

Spanielmadlady profile image
Spanielmadladyβ€’ in reply toHaylz2109

There are currently supply issues with some brands of hcq. Be patient as it can take 6 months to gain full effect x

Haylz2109 profile image
Haylz2109β€’ in reply toSpanielmadlady

Thank you! Yes the pharmacy did mention that, luckily I've got 2 months worth currently so once I finish a month i will be putting the repeat in so hopefully there will be enough time to sorce it 🀞🏻 Oh 6 months ? I thought it was only 3, thanks that information at least I know now 😊 xx

Spanielmadlady profile image
Spanielmadladyβ€’ in reply toHaylz2109

It can take up to 3 months to start to work 6 months for full effect.ive been on it 5 years now xx

Haylz2109 profile image
Haylz2109β€’ in reply toSpanielmadlady

Thank you for that, that's good to know! Hopefully now these will be a long term option for me also 🀞🏻 xx

JCZW profile image
JCZW

Hi Haylz2109Sorry to hear that you have felt so rough.

Sounds like you have a really good rheumatologist.

I hope you start to feel better soon.

Xx

Haylz2109 profile image
Haylz2109β€’ in reply toJCZW

Thank you πŸ₯° I didn't know it was a flare to begin with and went to the gp in case it was something else but she couldn't say. I had a bit of trouble getting my new medication which was why my rheumatologist rung me and I explained to her and she's been amazing only started seeing her in January too! Thank you fingers crossed now 🀞🏻 xx

Krazykat26 profile image
Krazykat26

I agree with the others haylz..your rheumy is spot on! I hope you start to feel somewhat better soon.I'm gonna offer some words if wisdom about steroids. You don't say what doseage you are taking..usually when I'm flaring mines goes up to 20mgs daily. They are very effective however they do come with side effects which for me were increased appetite and quite volatile mood swings. I always felt hungry at first but it's settled down n I haven't gained weight..in actual fact I've lost weight. So if you want snacks make sure they are healthy ones so you don't gain weight. The mood swings for me were something else. I was going from euphoria to anger to upset to tears in very quick space of time at first! πŸ˜„πŸ˜†πŸ˜‚πŸ€£πŸ˜­So if you do feel a bit out of sorts don't panic it's the steroids!! All the best πŸ’œπŸŒˆ xx

Haylz2109 profile image
Haylz2109β€’ in reply toKrazykat26

Hey Kat, I honestly can't fault my rheumatologist she's been the best thing that's happened to me in the last 3 years of investigation. This is my 3rd time being on steroids in just over 2 months, the last 2 times I was on 20mg then tapering down those were both for only I think about 3 weeks. This time because I'm on them for 6 weeks and I told her last time I felt more stable on the 15mg she's put me on the 15mg tapering down. I totally agree with the hunger and the volatile emotions, I feel like it was more uncontrollable for me whilst on 20mg. Yes definitely the best advice lol I have definitely tried to stock up on all the healthier options because I know how much I ate last time which mainly consisted of egg wraps πŸ˜‚πŸ™ˆ don't know why! Thanks for that lovely πŸ’• seem to be all on the right track and at least not having the low grade fever as much already thankfully! Xx

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