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Determined radiographer
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Discussion Starter · #1 ·
Hi all,

I just posted in the welcome forum again after two years, and was wondering if what I am experiencing right now is to do with my lupus or not? Thought if other people have had similar then it maybe that!

I do get flare ups now and again when I get really nasty mouth ulcers, but at the moment, I have them AND I am getting constant large, red, angry lumps on my face, which appear to be spots? I haven't really ever suffered with acne, I mean I have had my fair share of spots over the years, but these are constant. As soon as one is going down, another one is forming near to it. They are really painful, red and angry and make the part of my face where they are swollen. I have three on my right cheek, one on my chin off to the left, one on my forehead, one right on the top of my ear and another starting to form again next to the ones on my cheeks. Even when they seem to have calmed down and the redness has gone away, I still have a hard lump under the skin.

Ok....tell me the truth....am I just suffering with a nasty case of spots at 35 years old, or is this related?? :lol: It is really starting to get me down now, and they hurt soooo much!

Thank you in advance!
Lisa
 

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I have experienced similar 'spots', I usually get them on my neck and chest. Mine look like hives, but they're hard and if you stretch the skin they look like blisters, but they are rock solid. They are usually quite painful too and they last for ages when I get them. Very annoying. Particularly as it looks like acne. So sorry you're getting them on your face, must be annoying, and they are quite itchy and painful. When I get them these days I just slather them with zinc cream, takes the angryness off them a bit.
 

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Hi Lisa,

Have you shown your rhumey or even a dermatologist?
Take pictures of them to have for your record.

I think you need to seek medical advice on this.

Take care,
Lyn
 

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Determined radiographer
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Discussion Starter · #4 ·
Thanks ladies,

I have called my GP today and she is off......again!!:mad: I could get an appt with another doctor, but to be honest, it is probably a waste of time as I will spend the whole of the appt explaining the lupus!!:lol:

I am gonna call the rheumatologist and see if they can get me in for an appt, even if it is with the rheumy nurse, as I know my rheumatologist is only there on Fridays once a month....

I will take some photos now, although if they ever get out, my reputation will be in tatters!!!:lol: :lol:

Thanks for the replies, it is lovely to have people to talk to who actually understand! :)

Love Lisa
 

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Hi Lisa, hope you get an answer from the gp or rheumy. They sound painful. Let us know how you get on.

I used to get something similar to this, I used to take it as a sign I was a bit run down, they were almost like boils, horrible on my cheeks, huge and lasted for ages. It will be interesting to see what the doc says.

Take care

Deb
 

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Hello again,

I used to get very severe skin infections (eye infections and huge abscesses) as a child and, more recently, just when my lupus flared before diagnosis, I got an attack of "late onset acne" (if one can call it that). It completely disappeared once I was put on plaquenil - I know that doesn't help you much as plaquenil doesn't suit you apparently. Hopefully it will clear up when the rest is under better control.

Katharine
 

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Determined radiographer
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Discussion Starter · #7 ·
Hi all!

Well I went to the hospital today to see the Rheumy, and have had another million bloods drawn, and saw a Dermatologist. He wants to see me next Thursday to do a biopsy, as this would give a definite diagnosis, whatever that means! He said I also have the typical butterfly rash at the moment, so obviously this is a flare up of some kind, but he wants to try to establish exactly what these lumps/spots are. I am on antibiotics in the mean time.

The rheumy mentioned they were testing me for (sounded like) Dashens?? I have heard of this, but I don't know how it is meant to be spelled to look it up anywhere? They are also testing for SLE again!:worried:

I asked why I was still diagnosed as having undifferentiated connective tissue disease and not lupus, when they always talk and refer to me having lupus, and she explained that I tick lots of boxes in many different types of lupus, but there isn't one that I tick all the boxes in, so it remains undiff!:(

They have also given me a becotide inhaler for the treatment of my mouth ulcers?!!!! Apparently it helps, so going to give that a go!

So, that's me uptodate!
Love Lisa
xxx
 

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Hi Lisa, glad you had such a good appt. I didn't know becotide did that, that is interesting.

Hope the biopsy is conclusive for you next week.

Deb
 

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Hi lisylou,

Sorry can't help you with what they might be looking at, I can't think what it might mean.

For my mouth ulcers when they are bad my doc gave me steroid tabs that I crush up with a little bit of water and then put them on the ulcer. Works a treat. In my country as far as I know we don't have an already made up paste, but I think the USA do. I guess her thinking was right in theory with the Becotide because it is a steroid inhaler, but not sure how effective it will be, do let us know. Watch out for oral thrush too after using it.

Take care,

love
Lily
 

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hi i get loads of spots but just under my right arm
that is a bit strange i think
i remember years ago about 15 years a got a load of spots also on the same place lasted about 4 months
the ones i get now one clears and another one appears
i also had a very large cyst and that has gone now maybe that is the plaq helping with that but teh spots can be sore and angry
 

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Determined radiographer
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Discussion Starter · #11 ·
Hi,

Well my skin is getting a little better now, and I am down to about 15 ulcers in my mouth so definitely getting there!

I have my appointment on Thursday about the skin, so will let you all know!
Thanks again for the support!
Lisa
 

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I am glad the mouth ulcers are clearing. I have been spared those wretched things they do sound very troubling and hard to live with.

Your dermy sounds concerned and helpful. Let us know what he does and what he says although you might have to wait for the results to get any sort of answers They can take a biopsy from unaffected but exposed skin, often inner forearm and even from unaffected unexposed skin like a buttock or tummy.

I know that Prednisone can cause acne like skin problems

There is no practical difference between UCTD and lupus. I am sure that many people get diagnosed with lupus usually preceeeded by ' mild' whereas more pedantic docs differentiate. You don't really want a formal lupus diagnosis because it can affect insurance possibilities


Best of Luck

Clare
 
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