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Thread: Hello- new to site.

  1. #11
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    Welcome to the site (: (belatedly)
    As others have said, Lupus mainly strikes women..but there is a group forum on WHL specifically for discussions between men who have lupus.
    It's so odd how so many of us just dismiss so much pain and aching to be "normal", and never really get it looked into. I'm glad that you did manage getting it diagnosed though, and that you're now being treated for it.

    Anyways, just wanted to pop in and say a quick late welcome, even if I didnt have much to say! haha

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    n.mac (07-18-2011)

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    Actually Lupus, as well as other AI diseases, is not inherited. Just because a parent has them does not mean that the child will have them. What we do believe is that there is a gene that is passed down through generations but that doesn't mean that you will get the disease. There are many factors that come into play which decide if the disease will become active, the gene only being one of them. Even if someone has the gene there appears to be something needed to "turn on" that disease. No one is sure just what that is yet. Could be a virus, something environmental or one of several other things.

    Hopefully one day soon scientists will find that gene and we will be one stet closer to finding a cure
    Last edited by tgal; 07-18-2011 at 07:10 PM.

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    lovedbyHim (07-18-2011)

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    When I first got diagnosed my issues were all skin related- bad rashes,muscle pain from sun exposure etc. I now avoid the sun-long sleeves,sun block etc and now my issues are more bone and muscle related. At my last ruhemy appointment I was told that my blood work showed I was tolerating the meds well but that some part of a sed rate showed increased markers for inflammation.so they gave me more meds.
    The meds I currently take are hydroxychloroquine,prednisone,methotrexate,folic acid,tramadol plus some steroid cream which makes my skin peel ( so i don't bother with that)

    Thank you for your interest Niall

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    Peridot20_Gem (07-18-2011)

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    Quote Originally Posted by n.mac View Post
    When I first got diagnosed my issues were all skin related- bad rashes,muscle pain from sun exposure etc. I now avoid the sun-long sleeves,sun block etc and now my issues are more bone and muscle related. At my last ruhemy appointment I was told that my blood work showed I was tolerating the meds well but that some part of a sed rate showed increased markers for inflammation.so they gave me more meds.
    The meds I currently take are hydroxychloroquine,prednisone,methotrexate,folic acid,tramadol plus some steroid cream which makes my skin peel ( so i don't bother with that)

    Thank you for your interest Niall
    Hi Niall,
    When i got diagnosed also 4yrs ago with the Raynauds mine was all skin related like yourself and i have to do the cover up job also.lol but my skins gone past steriods and my dermo wants me on Dapsone tablets with methotrexate but i've got a Rheumo who's being abit stubborn mate. I can't sit in shade no more as within 10mins i'm in a flare and come winter mainly banned from going out into the cold so i'm house bound alot.
    I've got the bone issues and muscles problems besides the spasms i'm 42 and have come to using a 3 wheel rollator to get around, if not that my wheelchair and for walking distance and electric scooter...what a life i say half the time.

    So your on plaquenil like myself i take 200mg tablets daily, they offered me prednisone but i refused being a steriod been on them in the past and i can't carry the weight gain it's way to much for my breathing, i'm on folic acid like yourself being an anaemic again besides having B12 Jabs for life, it took 6mths for my bloods to show that, as Lupus is terrible for fluctuating the bloods and can sometimes give off false readings and it thrieves on people with stress and depression makes you feel your symptoms even more.

    Now i never had the peeling with the steriod creams but it come to ware they burnt my skin out in the end plus they're an aging process cream where you need to take 6mths break in between finishing a tube.

    Niall it's nice of you to let we know what your taking besides and it will be nice to see you taking part in the threads also.

    Terry
    Last edited by Peridot20_Gem; 07-18-2011 at 05:13 PM.

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    Hi Niall,

    How you feeling today and i always say this hoping another member as a day abit easier but i just hope it's one a little less pain free.

    Terry

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    Hi Terry
    How are you today?
    I know what you mean about the prednisone and weight gain -I normally take it for short periods but even so I have trouble keeping my weight down.
    It seems that eating helps me tolerate the meds-so far I haven't had any bad reactions to anything I have to take.
    And of course with the aches and pains it makes walking long distances( easiest form of exercise) increasingly more difficult-especially now here in chicago we are in the midst of a heat wave-but that will be short lived before you know it we will be complaining about the snow!lol

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    Peridot20_Gem (07-19-2011)

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    Hi Niall,
    I've had my calfs aching again mate and the paralization on my face again of the sjogren's you feel like your havinga stroke it's terrible.

    Trouble with steriods and it dow matter what they're for some people get sides affects and if your hormones change with steriods then you gain weight and it dow matter how little you eat..weights still gained.

    I came to be on steriods 25yrs ago at 18 i had temporal-lobe epilepsy where you have autisum but the behaviour is simular to schizo behaviour they had me on a steriod of 250mg weekly besides having depression and then they had me in an asylum for 12mths and in 3yrs i went from 7 & half stone to 18st and loads of tablets, they rushed into my moms after 3yrs of drugging me up and pulled me off the lot in one go i went through hell for 6mths shakes the lot and within 6mths i was back to 9st but they caused me to have my right side of my brain damaged that does'nt work any more and i never knew this lot till i attended a brain surgeon at the QE, Birmingham...i've got a right history behind me.

    I won't touch steriods for the lupus as they wanted me to have the prednisone jabs to ease the swelling of my joints...no way mate.

    At 42 i'm in a right state if i need to walk out now it's my electric scooter and how you have it hot, we've got summer here but the temp today is low at 13 and i'm cold through the Raynauds and got a thermal vest on besides a fleece jacket...what a life mate.lol

    Terry
    Last edited by Peridot20_Gem; 07-19-2011 at 04:58 PM.

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