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Conditions and Diseases > Lupus Forum > Not Getting Better?
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Q: Not Getting Better?
asked by: Jen779 on February 17th, 2005
New User
I have not posted on this site for a while, but I have a friend, who is male, and has been diagnosed with lupus since last september. He just seems to not be getting better! He is incredibly frustrated, and he really thinks he is going to die. He just had his rhuemy tell him that on a scale of 1-10 with 10 being the worst, he is at about a 7 or 8, which really freaked him out. He is on so many medications now, I can't even list them all, but the primary ones are prednisone (40mg), cellcept, and plaqunil. He is also getting shots to help increase his bloodcount once a week. He is still tired all of the time, and his blood count just is not coming up. If any of you could tell me if it took you really long time to get past your first flare, and how you did it, it would be appreciated. It would be nice to tell him he is not alone, and not to worry about dying!
Thank you
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melamom
replied on February 17th, 2005
New User
Lupus Alternative
Hi,
i am not a lupus sufferer, nor do I know alot about the disease, but I am an advocate of alternative medicine. Have you ever thought about seeing a natropathic dr??

There are alternatives to the meds that he is taking...Which are peotentially causing different sideeffects that are being counter acted by other meds...And the roulette begins.


Just a thought...Worth a try??

But do your homework and find a reputable one in your area.


Good luck...If you go the vitamine route, get in touch with me please.


Thanks

deb
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sandyallen
replied on February 17th, 2005
Extremely eHealthy
Why doesn't your friend get a second opinion. I am not a Dr. But I have a lot of medical situations, I am a firm believer that too much medication is as bad as not enough medication.
Sincerely,
sandy
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nadeentears
replied on March 11th, 2005
Experienced User
Not Geting Better
I diagnosed with sle systematic lupus erthromatosis. I was panic and frustrated. I never heard about it before and I don't know what it looks like? With the time I cope with my illness and started to learn a lot about it,so I can deal with it. I took first plaqunil 200 mg and celebrex 200 mg twice a day. A month ago I did some blood check and my lupus was at flare so my dr prescribed for me beside that prednisone 10 mg as a start. I feel better but I hate gaining weight. Prednisone increased my weight although i'm on diet and doing sport. You will be comfortable and satisfied if you have a good trusted doctor. He,she,will help you a lot. You have both work together. Don't stop your medication even if you feel better. You don't know when it flare. It will be hard for your doctor to treat you.
Write all your symptoms in a note, when u visit your doctor u discuss it with him.
My heart is with you
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Hopehealth
replied on April 5th, 2005
New User
I agree with the alternative medicine approach and the natropathic. I am very good friends with the president emeritus of the american naturopathic medical association and I can help you find the best of the best.


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g26pa
replied on April 14th, 2005
New User
Hello,
It is great that you can give your friend support. My sis has lupus sle and was diagnosed a year after giving birth to her second baby. My sis is on some of the same meds as your friend plus others. I do know the medicine can especially the plaquenil gave her a nasty feeling...Once she spoke to the Dr. And he made some adjustments to her medicine, she is doing a little better. She makes sure to rest during her "flare ups" and takes a positive approach to this disease. I try and help her laugh a little, read positive things to her and give her any support she may need...My prayers to you and your friend..If you ever need support..
Best of luck,
ann
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