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    I was diagnosed this week with SLE. My doctor provided little info on the disease. He told me to get on the internet and look it up. I have and I have read so many differant things that I am now a little confused. He told me to stat out of the sun. I live in Texas, do you know how impossable that is?! Does that mean I can go outside if I stay in the shade? What happens if I dont? What physical limitations do SLE patients have? I am planning to start school this summer, will I be able to be a full time student as well as take care of my family? So many questions, so few answers!!

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    Alison; Your doctor told you to stay out of the sun because ultra-violet light can induce or cause flare-ups in Lupus. This is known as photosensitivity. Reactions can include a rash, fever, fatigue, joint pain and other symptoms. In some cases, sun exposure has resulted in the onset of kidney disease.
    Most doctors will tell you that, if you must be in the sun, make sure that you use a good sunscreen (with as high SPF as possible that protects against both UVA and UVB) on all exposed areas of the body. Limit you time in the sun, wear hats, glasses and light weight clothing that will reduce sun exposure.
    Be sure to let your other doctors and dentists know that you are photosensitive as some prescribed medications can cause photosensitivity.
    You need not go to the extreme of staying indoors with the shades drawn on sunny days, but do be aware that reflected light can be just as damaging as direct light (especially strongly reflected from sand, water or snow). You might want to shun beaches, boats, golf courses, ski slopes or any unshaded outdoor areas (winter or summer)- unfortunately. Also, be careful of overhead lighting, particularly unsheilded flourescent bulbs as they emit substantial amounts of ultraviolet light.
    Also, know that some drugs can heighten photosensitivity -make sure you always read the contra-indications of your medications before taking them!
    Hope I have been helpful
    Peace and Blessings
    Saysusie

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    Thanks for the reply. I am going to see a rheumotologist this month for more test. Hopefuly I don't have SLE, it really seems like a nasty disease. And the sad part is is that its not very well known and most people have'nt the slightest idea what it is. It sounds like you know a lot about it. I hope it hasn't been too hard on you!! <BLOCKQUOTE><font size="1" face="Verdana, Arial">quote:</font><HR>Originally posted by stjames13:
    HI ALISON,
    First of all don't freak out as STRESS is your worst enemy with LUPUS. This doctors bedise manners seem a bit off and I would be inclined to go see another rheumotologist to insure that first the diagnosis is 100% correct. It is very easy to have the tests done and they some back saying you have Lupus and you don;t or visa versa. It took over 6 months to be 100% posotive that I had SLE and the discoid was easy by just a simple biopsy. It sounds like tome that this doctor you sw does not have your best intrests in mind and you should seek a doctor who specialises in this type of disease such as a rheumotologist. For any doctor who would answer a person with the potential of a life threating disease with such a lack of compassion or caring I would be heistant to believe in his diagnosis and abilities to be of any help with the Lupus or any opther problem I had. As susie said there are many things you can wear and different drugs to try but I gotta be honest this doctor seems a bit off the wall and I would first question his knowledge of the disease and if he is unable to give you any answers I would certainly question his diagnosis. FIND a new doc and get a second opinion as it seems this doc can't help you anyway so you need a new doc with this diagnois anyway. Personllay after an answer like that I would be looking for a new doc for everything!!!!!

    stjames
    <HR></BLOCKQUOTE>


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    Thank you for the very informative response. It answered a lot of my questions! Are you speaking from experience? I hope not! It just really boggles my mind that this disease can reak so much havoc on a peron's life. No wonder so depression is one of the side effects of LUPUS... <BLOCKQUOTE><font size="1" face="Verdana, Arial">quote:</font><HR>Originally posted by Saysusie:
    Alison; Your doctor told you to stay out of the sun because ultra-violet light can induce or cause flare-ups in Lupus. This is known as photosensitivity. Reactions can include a rash, fever, fatigue, joint pain and other symptoms. In some cases, sun exposure has resulted in the onset of kidney disease.
    Most doctors will tell you that, if you must be in the sun, make sure that you use a good sunscreen (with as high SPF as possible that protects against both UVA and UVB) on all exposed areas of the body. Limit you time in the sun, wear hats, glasses and light weight clothing that will reduce sun exposure.
    Be sure to let your other doctors and dentists know that you are photosensitive as some prescribed medications can cause photosensitivity.
    You need not go to the extreme of staying indoors with the shades drawn on sunny days, but do be aware that reflected light can be just as damaging as direct light (especially strongly reflected from sand, water or snow). You might want to shun beaches, boats, golf courses, ski slopes or any unshaded outdoor areas (winter or summer)- unfortunately. Also, be careful of overhead lighting, particularly unsheilded flourescent bulbs as they emit substantial amounts of ultraviolet light.
    Also, know that some drugs can heighten photosensitivity -make sure you always read the contra-indications of your medications before taking them!
    Hope I have been helpful
    Peace and Blessings
    Saysusie
    <HR></BLOCKQUOTE>


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    HI ALISON,
    First of all don't freak out as STRESS is your worst enemy with LUPUS. This doctors bedise manners seem a bit off and I would be inclined to go see another rheumotologist to insure that first the diagnosis is 100% correct. It is very easy to have the tests done and they some back saying you have Lupus and you don;t or visa versa. It took over 6 months to be 100% posotive that I had SLE and the discoid was easy by just a simple biopsy. It sounds like tome that this doctor you sw does not have your best intrests in mind and you should seek a doctor who specialises in this type of disease such as a rheumotologist. For any doctor who would answer a person with the potential of a life threating disease with such a lack of compassion or caring I would be heistant to believe in his diagnosis and abilities to be of any help with the Lupus or any opther problem I had. As susie said there are many things you can wear and different drugs to try but I gotta be honest this doctor seems a bit off the wall and I would first question his knowledge of the disease and if he is unable to give you any answers I would certainly question his diagnosis. FIND a new doc and get a second opinion as it seems this doc can't help you anyway so you need a new doc with this diagnois anyway. Personllay after an answer like that I would be looking for a new doc for everything!!!!!

    stjames

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    Alison; Unfortunately - yes I am speaking from experience! My experience with this disease and my daughter's experience with this disease. I am glad that you are going to see a rheumatologist! Perhaps he will be a bit more knowledgeable and caring than your first doctor!
    Keep us posted!

    Saysusie

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    ALISON I am speaking from ufortunaley forst hand experience as I am diagnosed with both SLE and DISCOID LUPUS along with HASHIMOTOS THROID syndrome and RAYNAUDS as well. It can be very hard on you but as you educate yourself to it you'll learn the does and don'ts to help prevent breakouts and possibley even go into remission. It's a hard disease to treat adn take care of because there is so little known about this insidious disease. Buut don;t let that alarm you as I have had it for some 4 years now and have learned how to take care of it and myslef but sometimes it will do as it pleases. I'm VERY glad to hear you're seeing a rheumotoligist and hopefully that other doc was wrong to begin with,until then just try not to worry or do tomuch research as you;ll find the more you read the more you may think you have it and upset yourself....once a well trained doc gives you a real diagnosis and a treatment plan if in fact you do have it, it is not the end of the world. It just means you too must adjut youeating and lifestyles to ensure that you keep it at bay and continue to enjoy yourself....the depression can come from to much resarch and scaring yourself to death!!! I have had a good therapist who reminds me constantly only I can put myself into a depression and I am only as disabled as I allow the disease to make me. If it makes you more depressed than sick from the symptoms that it has won.....on top of a rheumotolohgist after geetting a daignosis like LUPUS it doesn;t hurt to talk with a psychologist who can help you deal with it and the problems you face with it. Mine has helped keep my spirits high and my mind strong and constantly fighting.

    stjames

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