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Hello, new to this site so bare with me :)

About 4 years I was diagnosed with epilepsy, after having loads of seizues. I am on medication for them and things have improved.

About 3 years ago while I was on holiday abroad I came out in a butterfly rash on my face, a rash on my palms of hands and soles of feet, and a rash on my legs and arms. My eye became very sore and swollen, my wrist and thumb swelled and my epilepsy went on overload. I also had an awful headache and my back ached loads. I was sick quite a bit too. I went to a doctor in Cyprus and he thought I had an alergic reaction to something. Every time I went out it became worse.

I got home 2 weeks later and everything died down. My GP just put it down to an allergic reaction. The rash had completely gone by this point.

Last sunday the same thing happened, but started with my eye. I thought I had conjuncivitis, my GP sent me to the hospital because he thought it was Irisitis. Hospital just said an infection, by the time I got home the same rash had appeared on my cheeks and nose and palms of hands. I was sick a few times but today, a week later the rashes have gone.

Lupus has been discussed before but I thought the butterfly rash would last longer. First time it lasted 2 weeks, this time 1 week. Is it varying on how long people's rashes last for?

Thanks, sorry rambled on a bit! :) :)
 

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Hi and welcome Martha May,

Sorry to hear that you have a few problems!

I have a Butterfly Rash - across nose , cheeks, neck and v-line chest rash. In my case the rash is flat but present all the time, especially on nose,neck and chest! It does look redder when I'm tired or flaring or when I'm hot!

Have you have more specific blood done yet; have you checked the criteria of Lupus to see if you have any other similar conditions!

Good luck and keep in touch!

Lesley
 

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Welcome to the forum Martha May

Like most everything else in lupus there is no set pattern to lupus rashes. They might come right after sun exposure or even several months later appear, or worsen. It is quite common for people to report worsening of existing rashes in late autumn. They can come and go in response to different stimuli.
Many of the anti convulsant drugs can cause rashes and some of these drugs can be photosensitising which might explain why you get them after unusual sun exposure. Often these reactions get worse with time so they become more likely.
It sounds as if you had a bad systemic reaction to sun too.

The most common form of drug induced skin reactions is the morbilliform or measles like rash - red pin point size which may grow and may run together but according to one source this doesn't appear on the palms or soles.
If lupus is for some reason suspected for some other reasons, the best thing would be to have a thorough check up -general blood work for any abnormality like thrombocytopenia which can also be drug induced, auto antibodies and urine, just in case. I'd also read through the lists of signs and symptoms on the info section of this site and the diagnostic criteria lists on the Not Yet Diagnosed section of the forum.
However lupus is diagnosed on symptoms too, very often joint aches and pains. If only the skin is affected and only from time to time it would not suggest a diagnosis of lupus unless it was proven by biopsy. A biopsy is unlikely to be done if there are no other symptoms.The anti convulsants very rarely cause clinical lupus although they might cause a positive ANA.
( Dr D Wallace ).

It is hard to get diagnosis of a rash which comes and goes because most people have to wait at least a few weeks to see a dermatologist. It might help for future reference to take pictures of your rashes. I would have my eyes tested, by an optometrist if you can't quickly access an opthalmologist.
If you are in the UK it would be worth seeing if there is an emergency ophthalmological service in your neighbourhood. They are more likely to be helpful than a general emergency dep

Meanwhile I would be very careful of sun exposure. This means no deliberate sun bathing or tanning beds and avoidance of the sun between 10 am and 4 pm or whenever your shadow is shorter than your height. It also means protection with clothing and hats with brims all round at least 4" wide, and wearing UV protective glasses as well as using an effective sun block.

Lupus can cause seizures but I suppose lupus seizures can be differentiated from other causes. People with lupus can have epilepsy too that's nothing to do with the lupus.

After all this I am not sure I have been much help ! :)

Good luck and take care.

Clare
 

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Discussion Starter · #4 ·
Thanks so much for the replies! Really appreciated. I have to admit I do feel very down today. I haven't been able to ride my horse for the last 3 weeks because my hips are so painful and I'm having to rely on friends to exercise her for me :sad: . Like my boyfriend says something must be wrong if he see's more of me and I'm not with my horse :lol: .

I am in the UK Claire. Maybe I'm just run down, it's just all confused me. I don't really won't to look at the symptom list to be honest. I'm seeing my neurologist soon and I feel happier talking to him than seeing my GP. He was the person who bought up the question of Lupus when the seizures first started.

Like I say thanks again! :) :) :)
 

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I'm Brand New At This

greenhaggis;506011 said:
Hi and welcome Martha May,

Sorry to hear that you have a few problems!

I have a Butterfly Rash - across nose , cheeks, neck and v-line chest rash. In my case the rash is flat but present all the time, especially on nose,neck and chest! It does look redder when I'm tired or flaring or when I'm hot!

Have you have more specific blood done yet; have you checked the criteria of Lupus to see if you have any other similar conditions!

Good luck and keep in touch!

Lesley
Hi Lesley:

I don't know if I'm doing this right. I also have the rash on my face and neck and chest with the v-line. If I am in the sun less than 5 minutes then it gets beat red. I will tell more of my symptoms but wasn't sure if I was doing this correctly. But my rash never goes away either.

CindyLou
 

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Hi Martha May and :welcome:

The butterfly rash can come and go, for many with ongoing untreated disease that is escalating though it can be present as a light blush at times and really flare up to beet red at others.

Hi CindyLou and :welcome: to you also.

To make a post of your own so that you can get responses go to the forum you want to post in (in this case Not Diagnosed). At the top of the page left hand side it says post new thread. You can then give it a title and post your message.

When replying to someone elses' post just hit reply to thread (not the quick reply button).

You will be zipping around the website in no time flat :)

love
Lily
 

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Cindylou, If you ever want to PM then please do! All this Lupus stuff is very new to me too!

Love Lesley
 

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greenhaggis;506454 said:
Cindylou, If you ever want to PM then please do! All this Lupus stuff is very new to me too!

Love Lesley
Hi Lesley: I don't know what PM is? Does it stand for post message?
 

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Hiya cindylou,

It means PRIVATE MESSAGE. If you click on the name of the person concerned in the lilac coloured strip to the left some details will come up. One says something like send 'X' a private message. If you click on that and send a message only that person will get the message making it private.

Good luck and welcome!
 
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