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Thread: Diagnosed with SE Lupus this week - Not quite sure how to feel.

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    Cool Diagnosed with SE Lupus this week - Not quite sure how to feel.

    Hello,

    Firstly I would like to say a big THANK YOU to all who have posted their stories on here. Reading through them gives me hope, understanding and a feeling of not being alone with this diagnosis.

    In a weird way, I feel relieved to now know what is happening to my body. As so many of you have expressed before, it is such a hard path due to 'looking normal' (had that comment repeatedly the last 12 weeks of flare up) but feeling so awful and knowing in myself that something is quite wrong.

    A lot of pieces of puzzle have fallen into place, in hindsight, with my health issues over the last 5 years. Fatigue, stress-induced illnesses & frequent susceptibility to infection, extreme sunlight reactions (especially since moving to live in the Caribbean 3 years ago) all now make a lot more sense. I always wondered why I got, what I called my, "fatigue crashes" after sun exposure at work and now I know there is actually a reason behind them - it's not just me going mad!

    A misdiagnosis of reactive arthritis, after a gastro infection in 2010, now looks as if it was my 1st full lupus flare.

    I have been lucky enough that my GP is the head of the Lupus support group here, and spotted my symptoms quickly enough to refer me straight to the University Rheumatologist. It has taken 12 weeks of crazy symptoms, but we now can treat them accordingly and I am on 60mg of Prednisone, reducing 5mg a week until I can be placed on Plaquenil. My ANA did come back negative, but the Rheumatologist said that he is without doubt this is the correct Lupus diagnosis, based on my history. My mother also has MS.

    My symptoms have been as follows:

    E.coli urine infection from initial stomach infection
    Strep D infection
    Painfully itchy scalp with little bumps
    Severe joint pain in hands, feet, knees, elbows and shoulder
    Severe fatigue (12 weeks so far and still hard to cope with)
    Photosensitivity on chest, arms, neck and face (blood vessels burst in direct sunlight)
    Temperature and feeling hot constantly
    Painful mottled red palms and soles which go red in the creases and mark easily when in contact with objects.
    Cold feet
    Severe Headaches from sunlight exposure
    Hair breakage and loss (getting worse)
    Glands up and down/ dry throat
    Shortness of breath during light walking
    Dry red eyes (worse when very fatigued)
    Insomnia/depression
    Muscular pain in calves and back of thighs
    Weight change
    My memory is awful - (I always thought that was weird compared to everyone else!)
    Thirsty all the time

    So... any advice on coping and living with Lupus would be warmly received. If you have experienced similar symptoms as above, I would love to hear how you have dealt with them. There is a support group where I live so I will be contacting them this week too. My main concern is getting out of this flare and then figuring out a way to return to work (not easy as I work on boats in direct sunlight!!!)

    Sending you all positive thoughts
    Last edited by Polly; 05-01-2013 at 03:32 PM.

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    Hi Polly,

    First of all, welcome to WHL.
    As for the flare you are in, hopefully the Prednisone will help, it is the only thing that helps me, when I am in a bad flare.
    I have alot of your symptoms, my major problem is joint pain, muscle pain, tissue pain, shortness of breath, fatigue and many others. I have these pains every day, but when I am in a flare, it is even worse. The daily pain level is at 5-6 and in a flare I am an 8 or more.
    The only thing I don't have, is depression and I am very thankful for that. Maybe it's because I have a very supportive, helpful, loving husband and family.
    If you have any questions, just ask, we all try our best to answer all of them, if we can.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Hi Polly-

    Welcome to WHL! It's a fantastic and diverse group of people that are each impacted in such different ways by SLE and it's AI cousins. Know that there are no stupid questions and if it hasn't been asked, someone has wanted to.

    Like you said, getting a diagnosis is a relief, because you finally have the answer to what ails you. Up until now, it's been a mystery. At last, your individual concerns can be addressed and treated.

    Again, welcome to the WHL family. We're happy that you've joined us.

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    Hello BonusMum and DebbieB!

    Lovely to talk to you both, and I thank you for replying to me

    I'm sure I will have lots of questions cropping up and it is great to know you are all out there, as a supportive network for each other.

    Debbie-B: When I started the Prednisone it took about 4 days to first feel joint pain relief. Do you have to take the Prednisone long term or do you balance it with other (eg Plaquenil) medication, depending on whether you are in a flare or not?

    I know this may be a stupid question, and I think I know that the answer is "How long is a piece of string"; but how long do flare ups last on average for you guys?

    I am a bit worried about working as I won't be deemed medically fit to work unless I'm taking no medication and in remission from a flare (due to the physical nature of work I do in direct sunlight). Living in paradise in the Caribbean has now turned into a prison as I can't go outside at the moment

    Wishing everyone a good day.

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    Hi Polly,
    I was diagnosed 3 yrs ago and w/ lupus and have been on meds (prdnisone,plaquenol & mycophenolate) ever since . I do feel better because of the meds but also due to the my new understanding of how sun exposure (even minor) affects me. I work full time mostly outdoors but I make sure to use sunscreen year round and wear long sleeve shirts w/ built in spf protection. Even w/meds the quickest way to trigger a flare for me is to not take precautions against the sun. Ill effects from the sun do not necessarily mean sunburn or rashes in my case it means joint pain,muscle aches,overall fatigue-general all over bad flu like(with out the runny nose) symptoms.

    What sort of work do you do that your not allowed to be on any meds? At my job we required to submit to frequent routine drug testing- but nothing I take prevents me from working or triggers a false positive for illegal drugs. In fact I have not told my employer I have lupus and when required to disclose info about meds I take for a job related drug screen this info is protected by HIPA and not given to my employer.

    Take Care! and Welcome!

    Niall

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    Hi Niall,

    Thank you for sharing your experiences with working in the sunshine. It seems that I am really sun-reactive too. That's great information that I can get UV protection long sleeve shirts to wear - I'm going to check them out now.

    Unfortunately, my career is as a Scuba Instructor :S Luckily my employers understand the situation and have been a tower of support so far. My professional DAN Diving Insurance specialist has advised the following:

    "The severity of symptoms in LE can vary, ranging from mild to life-threatening and can affect the lungs and kidneys. Lung damage occurs in 50 percent of these cases and can vary from being asymptomatic (having no symptoms) to life-threatening. It can affect the nervous system, causing stroke, neuropathy (nervous system disorder), seizures, weakness or other ills. In this wide-ranging disease, many body systems can be affected subclinically. There is a concern regarding exposure to sunlight, which can induce or exacerbate LE activity, though this varies among individuals

    Clearly, consideration for diving must be made on the basis of symptoms and their effects on the individualís ability to respond to the exercise requirements of diving. Many cases are mild and should pose no problem for diving once the individual has been evaluated, found in remission and no contraindicated medication required and so cleared for unrestricted activity as a diver. Do be aware that the fitness benchmark for diving instructors and professionals is very much higher than a diverís.

    Individuals with impaired pulmonary or cardiac function, and perhaps chronic joint inflammation with tissue changes, will carry a higher risk of compromising these body systems during a scuba dive. Individuals with CNS damage may be at greater risk of seizures, and hence drowning. As a result, they may be not be medically certified to dive. Whether diving is synergistic with the disease or its treatment (corticosteroids and others), and can increase the probability of aseptic bone necrosis, is not certain and many physicians who may permit a diver to dive once he/she has been made suitably aware of the risk and warned will consider an instructor, being also responsible for others, as unfit.

    I advise you to wait until you are in full remission on no medication and then discuss your future diving career with your diving Physician."

    That kinda throws a spanner in the works!! Are there any other divers on here?

    Take care,

    Polly.

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    Hello and welcome to the WHL family! We are so glad that you found us. You were told above that there are no stupid questions and that is very true. More true when dealing with AI (autoimmune) diseases than anything else because we are all different and each flare can even be different.

    Although the majority of us tend to be photosensitive not everyone is. What was told above is correct. Some people get rashes and or burns but many of us get pain or thrown into flares from it. UV lighting can be just as bad as the sun. I cannot use fluorescent lights in my home or I will stay sick. No going green for me!

    while many people go into a place where the disease can go very mild (a few actually go into remission), most of us have to stay on at least plaquenil and possibly a very low dose steroid to keep it that way. When the disease flares the doctors will up the meds and add new ones to get it under control again before reducing it back down to the basics. Hopefully you will be one that gets to a remission place and can come off but you might want to discuss with your doctor how he/she handles the disease long term.

    keep this in mind though. You will often hear us speak of our "new normal". Often our lives changed drastically and they don't resemble the life we thought we would have but please know that doesn't mean it is bad. Sometimes the door that opened was just as good as the one that closed and we would have never known we were interested in that thing had we not had to look.

    You are not alone on this journey. You are now a part of our family and we will be here with you every step of the way
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Mari,

    Thank you so much for your lovely words: "Sometimes the door that opened was just as good as the one that closed and we would have never known we were interested in that thing had we not had to look." I love that attitude

    I am kind of lucky that my living room has no windows for natural light to come in, however, the light in my living room is one of those awful strip lights (always hated it!) so I am going to look at getting nice lamps instead. I had never thought of that affecting me.

    Feeling much better with all this great support

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