A little guidance please: Have mild lupus for which... - LUPUS UK

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A little guidance please

weg1 profile image
weg1
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Have mild lupus for which i am prescibed hydroxychloroquine, started on two tablets and then got down to one, recently got the cold bug thats going around and stopped meds completely as i wondered if hydro... suppressed my immune system, would i get over the cold quicker if i allowed my body to fight unaided.

This morning i feel i am boarder line sinus infection and feeling proper rough, does hydro.... help with other symtoms of lupus or is it just for joint pains.

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weg1
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Chapter profile image
Chapter

My understanding is that Hydroxychloroquine is a Disease Modifying rather than an immune suppresser. i have found that Hydroxy helps with skin flares, muscle and joint pain, and headaches. I have also read that there is some evidence that it helps to lower blood preasure, and nausea. It takes a while to work but ri you do quit taking it you will find out how much it was helping, and you don't want to get a flare well already sick with cold. Hope you feel better soon.

loretta1106 profile image
loretta1106 in reply toChapter

It definitely helped with my nausea which I got often before I got on Hydroxychloroquine! I also was told it helps with joint pain which I still have but..... I thought it helped fight a depressed immune system.

grannyjogger profile image
grannyjogger

Like Chapter it's also my understanding that hydroxy does not work by suppressing the mine system. I've been taking it for over three years and after a few months noticed big improvements to my skin as well as a reduction in joint pain. When I first started taking it I was given a booklet explaining about the drug and why it was used for autoimmune diseases. It might be useful to speak with your rheumatology nurse for some advice. Good luck

misty14 profile image
misty14

Hi weg1

Sorry you've got this nasty cold. You should talk to your GP as you may need antibiotics for your sinus infection and you must not

Come off your lupus drug without the advice of your GP or lupus nurse. Last thing you need is a flare!. Hope you feel better soon.X

weg1 profile image
weg1

I wrote a lovely reply and obviously didn't send it and now i'm tired and lost the thread! Hope this makes some sense

Thanks for the info, conveniently got rhumy tomorrow, just need to be sure about hydro... only missed 2 days. it's mild SLE, I still had joint pain on hydro... and this along with IBS has actually stopped since not eating wheat and changing positions at work. do i continue with hydro... for flares i may not have.

I also take levo and lio thyroxine for hypothyroid and tamoxifen for breast cancer, all the meds have the similar side effects and i am struggling with it all, I have three consultants at three different hospitals (all ok in their own way) and I along with you guys to help need to join it all up, was tested for addisons today aswell and I'm terrified of what I might come up with next!

Thanks for the support it's a lonely path some days

x

misty14 profile image
misty14 in reply toweg1

Hi weg1

Good luck for your Rheumy appt . I 'm sure you will get good advice. I've got mine today so maybe we'll bring each other luck?.

You have a lot to deal with3 Consultants in different hospitals is tough to coordinate along with your health. I've got 3 Consultants but in the same hospital so I feel for you.Hope you feel better soonX

weg1 profile image
weg1 in reply tomisty14

Went ok nothing new to report now down to once a year, will stay on 1 a day hydro.. for now while levels are still leveling and then maybe every other day, decided not infected yet just rubbish cold, more rest rest rest, bored bored bored!

hope your day went well

x

misty14 profile image
misty14 in reply toweg1

Hi weg1

Glad your Rheumy appt went well and your illness is stable , hope that continues.

My appt went well, learnt a lot as diagnosis for me is difficult!. I'm reducing steroids and have been given new advice. I hope your cold soon goes, lots of Vit C and tic as you don't want to flareX

chrisj profile image
chrisj

Along with other comments from people I've found that hydroxychloroquine (plaquenil) helped me with the fatigue....

Lucy74 profile image
Lucy74

Ok I was wondering about hydroxy, as I thinking about starting it early next year. Does it help with the sun sensitivity? My Rheumy said it helped with skin, but then I realised I should have asked him what he actually meant by that! My skin is fine, unless I go in the sun.

weg1 profile image
weg1

Morning

Rhumy enforced the hydro... was good for fatigue joint pain and skin I didn't get a definition of skin, as i understand hydro.. makes you more prone to sunburn so another reason to stay out of the sun, she also said that some other blood levels were coming down whilst i'm on it so she would prefer me to continue. I see people mention plaquenil I didn't like this version gave me nausea and found quinoric more tolerable.

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