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Thread: Need Some Advice Please!

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    Smile Need Some Advice Please!

    I am pretty new here. I do not post much. However I have a problem. I have been diagnosed with SLE and RA. I have many other health problems. Type I Diabetic, thyroid removed, back surgery. My doctor put me on plaquenil 2 x a day. At first it seemed to work. However the last month I have been having what seems to be muscle spasms in my upper arms and they are really bad. My arms feel like they weigh 100 lbs each. I am also having really bad pain in my hands. My digestion is really bad also. My question is have any of you experienced this? I live in WV and my doctor is very old-fashioned and out of date. He says plaquenil is all that I can take. I am thinking of traveling to the WVU campus in search of a new doctor. Thanks again for listening.

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    Quote Originally Posted by doublecamp52 View Post
    I am pretty new here. I do not post much. However I have a problem. I have been diagnosed with SLE and RA. I have many other health problems. Type I Diabetic, thyroid removed, back surgery. My doctor put me on plaquenil 2 x a day. At first it seemed to work. However the last month I have been having what seems to be muscle spasms in my upper arms and they are really bad. My arms feel like they weigh 100 lbs each. I am also having really bad pain in my hands. My digestion is really bad also. My question is have any of you experienced this? I live in WV and my doctor is very old-fashioned and out of date. He says plaquenil is all that I can take. I am thinking of traveling to the WVU campus in search of a new doctor. Thanks again for listening.
    Before I answer I need a bit more info. How long have you been on the plaq? I can already tell you that I think you might want to look into finding a new doctor that is a bit more aggressive when it comes to treating Lupus however that decision is up to you but I would like to know how long you have been taking the plaquenil before I say much more
    Mari

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    everyone has the right to a second opinion.

    sometimes the older docs are a lot more caring, if they are prepared to update themselves.......
    they are the best.

    it is your body, find someone to help you look after it.

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    Steve I have been on plaquenil for 2 years plus. I can tell that my condition is not improving. The rash is really bad on my arms face and hands. Not really rash but redness. I have not did well since I had my thyroid removed. The pain this weekend has been horrendous. I think it is the worst I have had since back surgery. I appreciate any advice anyone can give. I just did not know if the lupus affected people this way. Thanks Linda

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    Hi Linda,
    I agree with Mari and Steve.
    A second opinion might be a good thing, especially since you have so much going on.
    If you can go to a teaching hospital, that's even better. They often have the docs who know the most up-to-date information.
    Hugs,
    Marla

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    I dunno. But if my doctor ever looked at me and told me I could only take a certain medication that I didn't particarly like after he diagnosed me with something so huge I'd shop around.

    I've been on plaquinel for over a year and have not had that problem with it. Obviously everyone is different. If you thing it may be the medicine definitely bring it up to your doctor.

    The first rheumatologist I saw told me he couldn't help me because althought my Ana was positive my white blood count was high and my ds antibody was negative. So I saw another. Who told me I definitely had some kind AI. He got me started in the right direction, the plaquinel the anti inflammitories, occasion steroids. So when I wanted something more aggressive and actual answers. I saw another.

    There is no shame in doctor shopping if you feel you need more. It's your life and your body.


    Good luck. Let us know how the trip to the university goes.

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    2 years and only plaquenil that isn't helping? I say fire him and find someone that understand this disease! Don't let it keep damaging you because this doctor doesn't get it!
    Mari

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    Quote Originally Posted by Phoenix2369 View Post
    I dunno. But if my doctor ever looked at me and told me I could only take a certain medication that I didn't particarly like after he diagnosed me with something so huge I'd shop around.

    I've been on plaquinel for over a year and have not had that problem with it. Obviously everyone is different. If you thing it may be the medicine definitely bring it up to your doctor.

    The first rheumatologist I saw told me he couldn't help me because althought my Ana was positive my white blood count was high and my ds antibody was negative. So I saw another. Who told me I definitely had some kind AI. He got me started in the right direction, the plaquinel the anti inflammitories, occasion steroids. So when I wanted something more aggressive and actual answers. I saw another.

    There is no shame in doctor shopping if you feel you need more. It's your life and your body.


    Good luck. Let us know how the trip to the university goes.
    Thanks for sharing that story! We run across that too often. Doctors that want to put too much on the bloodwork an not enough on the whole picture! Glad you found a better doc!
    Mari

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

    ~Winston Churchill~







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    Thanks everyone for your replies. I got a referral to the University except it is not until January. I went to my primary doctor to get this referal. He ran some bloodwork and called me right back to come back in. He said the lupus was full blown. Here is my lab results. AutoAntiboties refernce range was 0-99 mine was 331. Sed Rate reference range 0-20 mine is 25. Autoimmune Disease Panel Reference range >120 positive mine is 351. The primary doctor said he would have to take care of it until I can get to the University. I am a type 1 diabetic and cannot take the steroids. He suggested a pain patch called Butrans. I just don't know how I feel about that. I take Norco for pain I am prescribed 2 a day. It is not touching this pain. It is also hitting my intestines very hard right now. I have a lot of decisions to make. Just don't know what to do. Thanbk you all so much for listening. I deeply appreciate it.

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    January is not soon enough. Can the pcp call the university and get you in sooner, like maybe an "emergency" basis? Are you near Charleston, WV?
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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