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Discussion Starter #1
Hi all

I've been reading the site uklupus

It's answered many questions, but also opened many questions as well. So I thought I'd speak to other people who have been affected by lupus.

As the title says, my mum has today been diagnosed with LSE. She got a rash on her face about 4 weeks ago, she had some tests done in hospital and they've confirmed it's LSE.

They've said she'll need more tests and medication - just what are these tests?

I searched wikipedia and the first thing it mentions is that LSE can ultimately kill. My mum is 55, but strong and fit. I'm obviously really worried - has wikipedia exagerated this?

Also, just to add, my brother has been diagnosed with ME as he is pretty much tired all the time. Is there a chance this is misdiagnosed and could be lupus as well? They've checked his liver and said it's not in a good state for his age - he put it down to drinking too much!!!
 

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Hello Bernard and welcome :)

I'm sorry to hear about your Mum's diagnosis but please let me reassure you, SLE rarely kills nowadays. My Mum has had lupus and polylmyositis for over 30 years now and she is a very fit, 'healthy' 70 year old with plenty of life in her.

You have to be very very careful when using the internet for information. It is an invaluable tool but can also be quite dangerous. First of all make sure you don't look at any information that is over 5 years old and, secondly, when it comes to anything medical, it is best to stick to medical sites. Also beware of any site that has un underlying commercial aim. Anyone trying to sell you something has every interest in making their product interesting but that is often done with little regard for facts.

Wikepedia can be useful but you have to remember that its content can be changed by other contributors and that a more global view can be had through specialised sites.

You can get a lot of information through the Lupus UK site (link on this board) and also through the London Bridge Lupus centre site (address below) as well as places like the John Hopkins centre (again address below).

http://www.londonlupuscentre.co.uk/contact.html

http://www.hopkins-arthritis.org/arthritis-info/lupus/

There are many other useful sites and also a lot of information to be had by asking questions here.

As to which tests they may run. It is difficult to say without knowing what tests have already been done and without knowing more about your Mum's symptoms or health problems she has had. Lupus is an incredibly complex disease and a wide variety of tests may be carried out to ensure the best treatment plan or see how it is affecting her.

Please don't hesitate to ask any questions you may have, the people here have a wealth of experience and can be of great help and support,

Katharine
 

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Welcome to the site - your mom is lucky to have a daughter like you that is looking to help her and learn as much about her illness as she can.

Lupus can and does kill - but it does not happen nearly as often as it used to. Over 50 years ago, 50% of SLE patients died within 5 years. Now the vast majority of lupus patients will have normal life spans! There are also different types of lupus, with some types being more responsible for SLE deaths. If your mom has non-internal organ involving lupus, then she is very unlikely indeed to die from SLE.

Your mother may be getting additional auto-antibody tests done and other tests to check her kidney functioning. It's hard to tell...

As for your brother, given your mother's recent diagnosis and his ongoing symptoms and liver test results, I definitely think it would be wise to check him for autoimmune disease. It can affect the liver too, and treatment would go a long way to helping him if it was really due to some autoimmune cause.

Best wishes to all 3 of you!
 

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Dear Bernard, You have been given good advice by Katherine and Maia.
Your Mum will find diagnosis an emotional time,so we are here if you need help to be strong for her.
She will improve with treatment.
x Lola
 

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Thanks all

You've cleared up a few worrying things for me. Guess we'll just have to wait for the test results.

Mum said the hospital told her "at the moment it's only on the skin", I presume by that they mean it will eventually spread to organs...? She's got swollen hands and feet. She's not been able to wear her wedding rings for weeks now. The rash on her face has cleared up, but it's still on her scalp under her hair and on her chest.

...oh, something that you lot made me do is laugh - "your mom is lucky to have a daughter like you":rotfl:

....I'm her eldest son!!:rotfl:
 

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I can only hope my son turns out to be as caring a individual as you are. Your mum is lucky to have you in her life and proud I am sure to call you her son.

Keep us posted as things progress.
 

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Hello Bernard and Bernard's Mum

It is extremely difficult to get a good understanding of this disease, when you are suddenly plunged into it cold. It doesn't compare well with the chronic diseases one might be familiar with.

First of all, it's not regarded as progressive. It's hard to tell how it might develop if it does at all, but one thing is sure: the sooner it is effectively treated the better

Second, lupus takes many different forms, affecting each person individually and with differing degrees of severity. Another feature of lupus is that it tends to come and go with periods of stability or even remission and unpredictable greater disease activity known as flares.

When somebody says they "have SLE" the first question has to be, " and how does it affect you?". It's a multisystem and organ disease and although it's classed as rheumatological because the most common feature is joint aches and pains, many other specialists can be involved in the more complicated cases.

For many lupus sufferers their symptoms are mainly arthritic with fatigue, photosensitivity with or without skin involvment, maybe a tendency to blood abnormalities such as anemia. Their symptoms are relatively easily controlled. and they respond well to medication. They lead normal lives have normal lifespans, making whatever lifestyle adjustments they need to make, and they rarely post on forums because they have no problems.

There's an overwhelming amount of information about all the possible guises of lupus and similar conditions and a lot of it will never affect a particular individual. To get to grips with a particular case you need information about that case and to cope with it effectively you need to be proactive.

Find out why your Mum was diagnosed - what symptoms and what tests have been done so far. What are the further tests and what are the results of those. You will be empowered by information and better able to dialogue with the doctors. You can also judge if everything has been done as it should be, and if medications prescribed seem appropriate and adequate.

It makes no sense to to give a systemic lupus diagnosis and then say the skin is the only organ affected. If that were so, the diagnosis would be some form of cutaneous ( skin) lupus, not SLE. Not to over dramatise, but SLE is a weighty diagnosis because it makes insurance virtually impossible even if the person is minimally affected without any inner organ involvement.
Clearly you are still in the investigative stage and will be having follow up consultations when hopefully your Mum's status will become clearer.
This forum is a fantastic resource with many very well informed and experience members through whom you can access reliable "pre digested" information to save you wading through innumerable articles some of which are poppycock and others very misleading. I would swear that Wikipedia article is very different from what it was a couple of years ago and has some very odd features. That's another topic, but it certainly is not very helpful.
Also beware commercial sites making huge claims for "natural" cures. Do your Mum a favour and don't start recommending these sorts of things.

Another excellent source is the Lupus Foundation of America's site at www.lupus.org

For now, I suggest you look at the symptoms, and diagnosis and testing sorts of articles as well as the criteria lists at the top of the Not Yet Diagnosed section. See which of the signs and symptoms your Mum has or is experiencing.

Make sure that urine has been tested. Very often thyroid, diabetes and B12 deficiency are tested too. It sounds as if your Mum should take great care with sun exposure: most lupus skin problems are UV sensitive and it's thought exposure can worsen systemic disease even when the skin doesn't seem affected

Just let us know if you need any help :)

All the best and bye bye for now
Clare
 

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bernard, just to let you know that clare is right, everyone is very diffrent with their lupus, ive had it for 20 years now and ive been in remission most of that time the only thing i experienced was chostochondritis and depression

and that was in 2007 i came out of that and am feeling fine, no pain no depression absolutely nothing.

my only medications are plaquenil and an aspirin aday. so dont worry too much. stay on top of things with the doctors and the right medications.

i used to go in the internet and read about the worst case senerios out there
and to tell you the truth thats what i thing brought my depression on.

i got educated about the disease with the right information and the wonderful people on this site and am living life. whatever concerns you have about your mother, please post them on here you will get excellent advised
just like youve been getting so far.

so take care and stay positive. :):):)
 

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Bernard, All the best. I thought you might be male. It is hard for Sons, I know mine worries.
Give our Regards to your Mum, and let us know how we can help.
Please take the advice about UV protection seriously. It can make a big difference.
x Lola
 

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Hi Bernard, welcome to the site. It's great to see you joining a support group, hear you'll be able to get lots of information based on personal experience which will enable you to help your mom. I know my son and daughter worry over me and I always try to put on a brave face when there around. Once your mom has good medical care she should do fine. Just remember tiredness is often one of our biggest hurdles its so difficult to get on top of things when your constantly tired. Come back again and let us know how your mom is doing and maybe you can tell her about the site. It would be a good source of support for her also.
 

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Hi Bernard,

I'm 52 and I was diagnosed 2004 although I had a few years of tests etc before then. Along with all the other great advice from Katherine and Maia, which has gotten me through some rough spots, I will just add what I learnt from them at the beginning.

Before your mums next appointment, there will be loads of questions that you want answers to...keep a note book handy and write them down, then take the book with you to the appointment. It can often be daunting when you meet the Rheumy doc and you will have so much going around in your head that you'll likely come out of there thinking "..why didn't I ask him/her about that". If you have the questions written it makes it that much easier to get the info you want.

Also, keeping her spirits up is key. My son is most probably about your age too and I also have 5 grandchildren. I can honestly say that 'rolling around' with them is a sure fire way to bring a smile to my face. Okay so they roll..and I watch. But you get the gist of what I'm saying.

I am fortunate to have my son..even if he sometimes gives the medical staff a hard time, I'm betting your mum is thinking the same. You can also introduce her to this site, don't worry, lots of us are two finger typists and some days when the fingers don't work so well or we've been hit by the Mac truck (Luppy joke), there's always a ((hug)) on this site.

Love and gentle hug to you both
 

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To the last two posters. This is a very old thread - July 2008 - so it is unlikely the OP will reply to you. I'm going to close the thread to prevent any further confusion.

Katharine
 
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