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Thread: hello, my wife has SLE

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    Default hello, my wife has SLE

    Hello. I wanted to post to say Hi. I may be in the wrong place but my wife has SLE and it is killing her. For starters I must ask...is it safe to assume that all the 'cure lupus natrually' web sites have been ruled out? They all sound like the ideal healthy way to eat, but does anyone know anyone that has actually been helped by any of it?
    Thanks,
    Craig

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello Craig,

    Welcome to WHL.

    Unfortunately there is no cure for SLE, natural, or otherwise. A good balanced diet is certainly beneficial to good overall health, but in regards to SLE/Lupus, there is no diet that has ever been proven to have any disease modifying effects on SLE/Lupus.

    There are people who push these sort of fraudulent "natural treatments" or "cures". They promise you the moon and yet they never provide any valid evidence of the safety or efficacy of their product. And, some of these products can actually be quite dangerous for a Lupus patient to take. An example would be products that purport to boost your immune system. The last thing anyone with an autoimmune disorder needs is to boost their already out of control immune system.

    Is your wife currently seeing a Rheumatologist? If so, has she been started on any sort of a treatment program with Plaquenil, or other Lupus meds? There are some proven meds available that can really help with managing this disease.

    Rob

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    chinadoll (12-29-2011), Craig Dempsey (12-27-2011), E42brchick (02-25-2012), Saysusie (12-26-2011), steve.b (12-26-2011), tgal (12-26-2011)

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    Hi and welcome to WHL. First let me say that you are not in the wrong place. We are really glad that you found us and even more glad that you asked the question that you did instead of going out and possibly causing your wife more difficulties. Rob answered your question so well that there is nothing more I can say.

    You do need to know that Lupus is no longer a death sentence although it often takes awhile to find the right combination of medicines to get it under control. I would be lying to you if I said things would get back to the way they were because, for most of us, it doesn't. Having said that you should know that things can get to what I call a "new normal" and there is life (a good one) with Lupus. Dreams and plans change but that doesn't mean you don't get to have them.

    Find a GOOD doctor(s) (this is harder than you know!), have her take her meds, eat right and learn the things to do and not do and you will be surprised at how "normal" life can be. There will be good times and bad it isn't as bad as you are thinking/feeling/worrying that it is right now.

    We are here for you and your wife as long as you need us.
    Mari

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

    ~Winston Churchill~







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    chinadoll (12-29-2011), Craig Dempsey (12-27-2011), E42brchick (02-25-2012), sami29 (12-29-2011), Saysusie (12-26-2011), steve.b (12-26-2011)

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    Hi Craig,
    I used to live in San Antonio, and I had a really difficult time finding a good rheumy. I finally found the best one that I've ever met - Dr. Emily Pineda.
    It may take a while to get an appointment with her, but she's really worth it!
    Rob and Mari have given you good advice. None of the "miracle cures" are worth wasting money upon. A good healthy diet is great in conjunction with the proper meds.
    If your wife has lots of digestive problems, she might want to ask to be checked for things like IBS, gluten intolerance or lactose intolerance. If she has a positive for any of those, then a change in diet is needed. I have daughters with those problems, and diet does make a difference for them. However, it's necessary to get the testing done before changing the diet, or you can get a false negative.
    I wish you luck. We'll be returning to SA in a year or so, when my hubby finishes his degree.
    Hugs,
    Marla

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    Craig Dempsey (12-27-2011)

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    hello and welcome Craig
    You've been given some excellent advice with reference to supposed"cures" and I can't add much more other than to say that in addition to avoiding these false cures, you must also avoid most herbal "remedies" as many herbs can actually cause the symptoms worsen.
    I also want to reiterate what Tgal stated...Lupus is not a death sentence and we can live long and productive lives once we find our "ne normal".
    Please know that we are all here to help both you and your wife as much as we can. You will find that there is always someonehere when you have a need for us. I am so happy that you fou d us and that you decided to join our family. Welcome

    Peace and Blessings
    NAMASTE
    Saysusie
    Look For The Good and Praise It!

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    Craig Dempsey (12-27-2011)

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    hi craig, and welcome.

    please re- read the posts above.
    3 of the poeple who have written are our 3 moderators.
    between them is the wisdom we need to help ourselves.

    i cannot add anything new to there advise,
    but i did want to say hello and welcome.

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    Craig Dempsey (12-27-2011)

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    Thank you all. She was diagnosed with lupus a couple years ago. It was mainly weak and tired feeling that went along with her skin rashes on upper arms and face. She has taken a lot of meds including Plaquenil but nothing seemed to make any difference except she failed her retina exam, so she stopped taking it. She finally got in with a Rheumatologist that took months for the appointment. Seems like a good guy, Dr. Jeffery Fienstien here in San Antonio. While waiting for that appointment she had a flare up that was worse that ever before.

    He ruled out fibro and arthritus and says he believed it all to be SLE. Blood work showed a concern with her liver as he put it 'the lupus may be attacking your liver'. She had an ultrasound last week and we go back to see him on Friday afternoon to get those results. My wife, Deanna, has alll but given up on positive thought and it's becoming more difficult for me to keep saying it's going to be ok when in reality it is just getting worse.

    Unfortunately, meds rarely effect her the way they do with others. If I take Nyqil, I'm out for the week, if she takes it an hour later she dusting the ceiling fans. Her current doc gave her some Ambian to help because she just cannot sleep at all (partly because of pain, partly because she is so worried). He said to make sure she could devote 8-10 hrs of sleep when taking the Ambian, she got 1 hr that night. He also increased her steriods by an enormous amount. Her rash cleared up, but that was all.

    I know stress is a huge factor, and I do everything I can but still stress finds her. I am trying to be supportive and doing everything I can, which because it's lupus, there's nothing I can do. I am sorry to ramble on here, in all these years I have not had anyone to to talk to about any of this as I am the rock and cannot have a break down.

    As lots of women tend to lie about their age, for years she was still 29 years old, until our son was aurguing and defending her to the other siblings. Since then every year, Dec. 15th, she dreads her birthday because 'she's too old'. This year however she turned 44 (in real years) and we stayed up all night crying because she wants to be 45, and 46, and so on. I feel so helpless.

    I will let you know how Friday goes. Thank you again for your input and support and listening to me.

    Craig

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    For many of us it takes months or even years to get a diagnosis and, after that, almost as long to find the meds that work. Sleep is REALLY important but like your wife, there are no meds that work to make me sleep anymore. One of the fibro meds used to do it but I maxed out on that and it stopped working. It does make things much harder.

    For a long time I didn't really know I was sick. I thought I was just getting "old" ( I am 43). When my memory didn't work the way it did before, when I fell into the bed after work because I couldn't go any longer, when I kept getting these weird rashes all over me... on and on it went. I then began to put on weight out of no where! I felt like I was falling apart and had no clue why. That is the most depressing time.

    She is going to find the right mix of meds eventually. Just remind her that it takes time but there is a light at the end of the tunnel
    Mari

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

    ~Winston Churchill~







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    I don't have any great wisdom to add, but wanted to say welcome and hello - and let you know that you are probably helping her more than you can really know just by loving her and being supportive. I am very lucky to have a husband who is like that too, and I know this is a frustrating and scary situation for both of us.

    We can't always choose which bends and waterfalls come our way as we row down "the river of life", but it's great to have somebody with you in the boat. You steer things to clear waters when you can, and you just do your best to avoid capsizing when you can't. I'm sure she's glad you're in there rowing with her!!! Hopefully this forum can be a lifeline for you, and maybe her, too!!!!

    Here's wishing you both a healthier and happy 2012....

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    First of all, welcome to WHL.
    Ohh, if I could be 44 again, I am going to be 56 in January.
    I am really sorry, that your wife is feeling so scared.
    My rheumy is telling me the same thing, he thinks that Lupus is attacking my liver.The ultra sound did not show anything unusual, but the bloodwork is showing very high liver enzymes. He is trying to figure out, what to do next.
    I am very fortunate, that Ambien is working for me, it's a Gods send. Without it I can't sleep at all.
    Like other people here told you too, thankfully having Lupus is not a death sentence anymore. I think your wife should talk to her doctor about her fear of dying, I am sure that he can ease her mind.

    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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