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Thread: New to WHL

  1. #1
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    Default New to WHL

    Hello Everyone,

    My name is Celi I was diagnosed with lupus about 5 years ago....During the last five years and surely before that I felt tired and nauseous and did not know why until I was diagnosed with lupus. Since then I have seen a reum. doc and have been prescribed plaquenil and mobic and that seems to be doing the trick. Although I have heard that both these meds although good for treating lupus are bad for your organs so I don't take them every day. I take them one day yes two days no and then yes on the 3rd day, enough so that the meds don't leave my system so that I do not feel joint pain. However worst than my lupus has EVER been in May I got the shingles......UUUUUGGGGHHHHH I will take lupus 10000000X's over the shingles.....I got them really bad and I was curious if having lupus is the reason I got the shingles??? No one in my family has ever had the shingles before and I must say it is was the worst experience of my entire life....Pain HA I had no idea what pain was until I got the shingles...They lasted about two weeks and then poof they were gone and I was cured but scarred for life both physically (on my lower back around the side-where my love handles are) and mentally.....I rather get hit by a bus then ever get the shinges again. I was calm for a bit when I read that they are not reoccuring but now reading some more I am hearing that they are!!!! Has anyone ever had them? If so I'd like to hear about your experience and if anyone knows if there is a connection to lupus and the shingles??? At any rate I am glad to have joined the community and look forward to being a part of it!

    Thank You,

  2. #2
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    Although I know nothing about shingles, I did want to stop and welcome your to the forum. There are wonderful people here and we bounce lots of ideas around with each other. I look forward to hearing more about you.

  3. #3
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    Hi Celi,

    Welcome to WHL.
    My first question is, does your rheumy know, that you only take the plaquenil every other day or so?
    I know it is very important to take the plaquenil as prescribed by the doctor, which is usually 2 times 200 mg a day.
    About the shingles, I had them a couple of years ago, but I had the inside version, right under the skin, no blisters on the outside, but very, very painful. There is actually a name for the non blister version, but I can't remember it. Mine lasted for about 6-8 weeks.
    My rheumy said it was common for lupies to get shingles.

    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).

  4. #4
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    Hi Celi, first of all welcome here to the lupus site, I am only new myself although I have had Lupus for more years than I knew. I have never had shingles but have known people that have had it and they say it is exteremely painful, doesn't it come from the chicken pox virus?

  5. #5
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    hi celi,
    i answered this a couple of days ago, but it has been lost in cyber space.

    plaquenil works basically by creating a chemical reaction within your body.
    it is refered to as a sesease modifying drug.
    it is slow to react within the body, as we take such small doses.
    if you reduce the dose even more, or take it infrequently, it cannot work properly.

    i suggest talking to your rhuemy about your fears.
    you may be doing yourself a dis-service.

    i am not familiar with mobic, but i believe it works on a similar type of reation.

    please mention your shingles to your rhuemy also.


    welcome to our family.

  6. #6
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    welcome to whl i agree with the others it is important to take your plaquenil regularly

  7. #7
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    Celi, the risk of damage to your organs from lupus is much greater than the risk of damage from Plaquinil (I'm not familiar with Mobic). Plaquinil has fewer side effects than steroids, immunosuppressants and non-steroidal anti-inflammatories. If you are getting your eyes checked every 6 months and following up with your rheumy for labs, the risks are pretty low. If you aren't taking enough Plaquinil to be effective your doctor can't help you, especially if you aren't being honest with him/her about it.

    I have also heard that lupies are more likely to get shingles because our immune systems are messed up. Shingles are a reactivation of the herpes virus that causes chickenpox, so you can't get shingles if you have never had chickenpox (one argument for getting your kids immunized against varicella). My understanding is that shingles CAN recur, so if you are at greater risk for shingles because you have lupus, it makes sense for you to take your meds as prescribed so that your immune system is functioning better.

  8. #8
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    I am taking Mobic, it is an anti inflammatory drug and helps joint pain.

    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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