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Thread: LIVING WITH LUPUS... Dealing with flares.

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    I had a horrible allergic reaction to sulfa drugs in high school. Kind of makes me wonder...

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    Wow, another eye opener. I too have bad reactions to taking sulfa drugs. I always get C-diff when i take it, so I now too say I am allergic to it. lol

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    It has been some time since I have posted here. So many things have changed with my disease that they are not sure what they are going to call it. I was interested to see the comments on the sulfa drugs. My Rhuematologist currently has me on sulfasalizine. Does that fit into the Sulfa drugs? I am assuming it does. My symptoms have changes so much over the last 6 months. The pain in my hands and arms comes and goes, but for the most part is under control. I am now dealing with major chest pains when I breathe. I have had Chest CTs, Chest XRays, blood work, they can not figure out why it hurts to take a deep breath. I have lost 25lbs over the past 5 months and I look and feel disgusting. Everyone comments on how skinny I look, they talk behind my back about how sick I look, I am always asked if I have gotten a 2nd opinion. All of this, plus the disease has really thrown me into a funk. On Sunday, I was changing my clothes and my husband, who has always taken care of me and continues to do so, looked at me with tears in his eyes and said "you need to eat more". I was sad, hurt, ashamed, and had so much guilt. I wish it was that easy. I am just so frustrated with this disease. I was a healthy, 33 year old 19 months ago and my husband I were looking forward to trying to have another baby. Now, almost 35, I have no fight left in me. ugh...... I feel so lost and frustrated....

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  5. #24
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    Hi there Mlockwood. I am so sorry you are in a bad flare and things are difficult for you right now. It is often hard dealing with the healthy world because they just don't understand the world that we live in. I am not sure what is worse. The people that look down on me and think I am crazy or the ones that look on me with pity. I know you are in a very hard place right now. I have come to the point where I hate having tests. I am so sick of hearing "we can't find anything wrong" when I KNOW there is something wrong. It is frustrating but please don't forget that we are here for you. You are not alone on this journey.
    Mari

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

    ~Winston Churchill~







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    Just a question, I'm not currently on anything, except flexerill for pain, and i only take that at night, otherwise i hurt so bad that I don't sleep, I lay there curled up and cry! Anyway, what would you suggest for dealing with the pain during the day time? I was a little achy this morning when I got up, I had some running around to do and was out in the sun for about 3 hrs, now i'm sitting here hurting all over, my toes, knees, fingers, elbows, shoulders..

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    wendy, spending 3 hours in the sun might have been enough to give you these symptoms.

    everyone is different. some of us can spend that amount of time in the sun, others deffinetely not.

    you need to speak to your doctor about pain medications.
    i use a combination of panadol osteo and celebrex for my everyday pains.
    both of these i need a script for.

    there is quite a few options, your doctor should be able to sort out what will work for you.

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    Hi Wendy, I get sick after 30 min. in the sun if I am not covered in sunscreen . When it triggers a flair, & it does for me, I oftentimes have to have my prednisone increased. I am on skelaxin for the spasms and still it does not seem to be managing the spasms. It's rough. Pain can wear on you over time. Here is a gentle hug(smile).

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    I just recently found out about sulfa drugs, I too tell people I am allergic to it also. My aunt is a pharmacist and told me that MOST, generic drugs are blinded with sulfa and that is why I always got worse and to stay away from generic.

    I also tell people that I am allergic to the sun, they seem to understand that better, then trying to explain the lupus aspect of it.

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    Quote Originally Posted by Melodyroseak View Post
    I just recently found out about sulfa drugs, I too tell people I am allergic to it also. My aunt is a pharmacist and told me that MOST, generic drugs are blinded with sulfa and that is why I always got worse and to stay away from generic.

    I also tell people that I am allergic to the sun, they seem to understand that better, then trying to explain the lupus aspect of it.
    I tell the the same thing. Allergic to the sun is much easier then trying to go into a disease
    Mari

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

    ~Winston Churchill~







  14. #30
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    I had a bad reaction to sulfa drugs back in 1985 and was told I was allergic to them. And I thought all of these symptoms only started 6 years ago. Very interesting...

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