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Does anyone have Lupus? I have an allergy type question.

20 replies

HoHolepew · 08/12/2013 09:33

Do you find that you are more allergic, or suddenly allergic to things? Does anyone get swollen/puffy eyes?

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HoHolepew · 08/12/2013 15:47

Pathetic bump

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spottyblanket · 10/12/2013 22:58

Re-bump

I don't know about lupus (off to google) but I get swollen puffy eyes, angioedema. I have a high white blood cell count so doc has made me an appointment to see him at end of week.... which is why I'm trawling through general health & dr.google.

spottyblanket · 10/12/2013 22:59

(Sorry I can't help - other than a bump)

Shosha1 · 10/12/2013 23:21

Yep:( from having hay fever I now have allergies to all sorts of things ( one of the weirdest is to something in make up and hair products that make me sleepy!)

I'm ok with short haired fogs which is luckyvascwe gave two staffies. But long haired with dander are lethal

Anything can set me off and there seems to be no rhyme or reason to it either.

HoHolepew · 11/12/2013 15:41

Thanks for the bump! Grin

It's so bizarre. I'm a sneezy, watery eyed bint usually but my face is getting puffy and nm eyes are just ridiculous.

I have a dog but so far so good in regards to her.

I git a steroid ibjection that really heloed but ut only lasted two weeks [ssd].

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HoHolepew · 11/12/2013 15:42

I hope you get sorted too spotty!

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BasketzatDawn · 11/12/2013 17:14

I don't have lupus (as far as I know!) but have several other autoimmune conditions and my allergies have certainly got worse over the last few years. But one/the only? good effect of being on high dose steroids this year has been my hay fever and all-year round rhinitis has been better. It has come back in recent weeks due to reducing dose.

Aquelven · 11/12/2013 17:16

Hi, I get the same problem. It starts with an irritating itch in my eye, usually the corner, or a runny nose, sometimes both. Then bang, within anything from five minutes to half sn hour my face swells up, especially my upper & lower eyelids till my eyes are just tiny slits in beach balls, just awful. I look & feel like Elephant Man. Sometimes, later, my face behind to burn too & I get rashes on my arms & chest.
It just seems to come out of the blue, no obvious cause. When it first started,a few years ago, my GP sent me to an allergy consultant who did blood tests. He changed a drug I was on, for an ongoing condition, thinking it might be that & said other than a mild allergic pointer for a grain not severe enough to cause the reaction, he was a bit stumped. He gave me a direct number to his office in case it flared up again but unfortunately he retired soon after. It's happened lots of times now, had other tests, nothing showing up as an obvious cause. But the last doctor I saw, a locum standing in for our GP who seemed more clued up about allergies than she is, said it's often impossible to pinpoint a cause of this facial oedema type reaction. It can be absolutely anything. Even something as hard to believe as someone walking past you with something on their clothes, industrial or something.
He said all you can really do is be always prepared to act fast to co bet the symptoms. Carry Piriton always, take at least two at once, four if you can feel it getting bad, then another an hour later & another after another hour. Then carry on with the dose on the box. Get antihistamine eye drops. Chemists & Tesco sell Opticron & use them at the first sign, four times a day.
If you have it bad though, do see your doctor. I have Piriton & steroid tablets along with steroid & Opticron eye drops on prescription to keep handy for flare ups plus a daily antihistamine & an Epipen in case my throat begins to close up. Please take it seriously & see your GP as you never know which episode is going to turn severe very quickly.

Aquelven · 11/12/2013 17:19

Apologies for all the typos in that post, on my phone. Wish there was an edit button!
Forgot to say I've ended up in A&E on ventilator more than once so don't just ignore it.

HoHolepew · 11/12/2013 17:42

Thanks for that post Aquelven, I'll make a note of what you suggest. I'm seeing the rheumatologist next week for, probably, a formal diagnosis of lupus and I'll mention it to him.
Hopefully I'll get another steroid jab until my anti malaria tablets start to work.

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Shosha1 · 11/12/2013 20:29

HOHo, Ive been on Plaquenil for ten years and although it has helped with the Lupus, it hasnt made a jot of difference to the random allergies, unfortunately.

I do have a hay fever jab some years tho ( it has depended on which Dr I see weather I get one or not)

HoHolepew · 11/12/2013 20:53

Oh damn!

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spottyblanket · 13/12/2013 23:32

Well, my allergy test results for common foods are negative. I have a bacterial infection somewhere as high white blood cell count. Looks like I have ideopathic urticaria & angioedema and I'll be lucky to ever find the cause. Sob.

A dermatologist told me to take as many antihistamines as it takes to control it. He said he takes 10 a day himself! So I'm taking the "big guns": fexofenadine 180mg. 4 - 6 a day seems to be helping so far.

Good luck hohoepew, hope you get all your symptoms under control.

HoHolepew · 13/12/2013 23:53

Oh no. Poor you! It's's awful not knowing Sad

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Lonecatwithkitten · 14/12/2013 08:59

I have mixed connective tissue disease which belongs to the Lupus family. I find my hay fever in particular is much, much worse when I am on Plaquenil. I have recently given up plaquenil as the side effects were worse than the disease at this point and allergies have not been so bad. However, my immune mediated disease cease pit is changing as I have developed pernicious anaemia and coeliac disease as well. I also have a suspicion that the mixed connective tissue disease has finally developed into Sjögren's syndrome.

Davros · 14/12/2013 14:41

I have scleroderma but have not noticed any allergies at all. Not very helpful, sorry!

wilbur · 14/12/2013 14:52

Similar to Lonecat, I have undifferentiated connective tissue disease, from the lupus family. I have been on plaquenil on and off for the past few years. At one point I was on too high a dose and developed terrible vertigo as a side effect, so do watch out for that. Re allergies - I have been allergic to cats, dust, horses etc for years, but not hayfever unless there is a lot of pollen. I did have a flare up of my tissue symptoms this summer and a bit of hayfever at the same time, but then it was a bad year for pollen, I think. TBH once you are in an autoimmune situation, I think allergies can flare up as part of that, but everyone is different - might be worth keeping a symptom diary so you get an idea of what might be triggering things? For me, plaquenil makes a huge difference to my symptoms as long as I keep the dose low enough to stop the side effects.

HoHolepew · 14/12/2013 15:29

Thanks for the replies.
I'm going to the rheumatologist on Thursday so I'll see what he says. I wanted to wait until I've seen him before going to my own gp.
Hopefull the tablets will help but I'll know to be wary of the doseage now.
I have very painful hands today, and while my eyelids aren't too bad the tissue around my eyes feel puffy.
I have noticed that a lower carb, low sugar and keeping away from artificial sweetners does help.

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wilbur · 14/12/2013 17:58

Agree re lower carbs - don't know why that is, but it does help. I have also just stopped drinking diet coke so I'll be interested to see if that helps as well.

KringleCandleLover · 14/12/2013 18:06

I have Discoid Lupus and tend to suffer with allergies.

Alongside Plaquenil I take 10mg of loratadine daily which keeps any symptoms at bay.

I also have a knockout antihistamine which is taken at night 25mg hydroxyzine hydrochloride to take as and when needed.

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