Thursday, March 10, 2011

Welcome to the lupus world, Benlysta!

It's only the first drug approved for lupus in about 50 years. Big news, ya think?

I could not be more thrilled. I've seem to have had my own serious lupus whipped for now into milder lupus. But this drug is a new and safe alternative for ppl with serious lupus. As a lot of us know, long-term high dose prednisone (corticosteroid) has side effects of major doom. I myself got the cataracts in both eyes, obesity and metabolic syndrome, diabetes, serious emotional lability (how to not make friends and influence people), the infamous "moon face", and I don't feel like listing more. I really welcome the new drug as a beacon of hope for people I know and will meet in the future who have serious lupus goin' on.

Some info from the Lupus Research Institute. I wrote out the url for ppl whose technology is giving them a bad hair day.

http://lupusresearchinstitute.org/news/discoveries/11/03/09/fda-approves-benlysta®-lupus-breakthrough-millions-sufferers
You can even see my doctor there!

It got through the FDA, a miracle in itself, and if it works as expected I think we've got a milestone on our hands!

4 comments:

  1. Hi. I'm so sorry you've been so sick. I share your prednisone woes. I also just started Benlysta. But I wanted to share something that has made me feel soooo much better. After getting nowhere with all of the traditional docs, I went to an MD who does regenerative medicine. She ordered a test to check for food intolerances. The test specifically checks your igG response to certain foods. According to web md:
    IgG antibodies are found in all body fluids. They are the smallest but most common antibody (75% to 80%) of all the antibodies in the body. IgG antibodies are very important in fighting bacterial and viral infections.
    So... I got my test results back 3 weeks ago. I'm highly intolerant to dairy, yeast, and eggs. I quit eating these the day I got my results. By that night, my nausea was gone. By the next day I had less joint pain and by the third day, the joint pain was gone and my fatigue improved dramatically. I was so amazed at the difference that I told my friend with Lupus. She did the same test and found out she can't tolerate wheat and a few other things. She quick eating those and had the same results I did except she also had improvement in her skin and her ankle swelling went down.
    I'm just trying to let everyone know that it might help. My new doc said that 70-80% of your immune function is in your digestive tract. So if you're eating things that cause you to have an autoimmune response, you're basically making yourself sicker.
    Oh, I forgot to mention that my shortness of breath is also way better too.
    Traditional MDs may not give much credence to this test, but to be honest, I've spent over 20 years only medicating myself and getting sicker and sicker. This actually works.
    My doc said that this lab does the most effective type of testing. Here is the link:
    http://www.pharmasan.com/testing.php?CatID=5&CatName=Food%20testing
    There are some labs that will run this test for you without a doctor's order, but most won't.
    I hope this helps you feel better. I feel so much better I feel like shouting it from the rooftops! Take care. -Sherry :)

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  2. HELLO,MY NAME IS BERNIECE. I HAVE HAD SLE SINCE I WAS 16. I AM 32. IM A BLACK FEMALE AND WOULD SAY THE SLE IS MODERATELY UNDER CONTROL. I HAVE BEEN ON PREDNISONE SINCE 16 ALSO. I HAVE MOON FACE SKIN RASHES ALL OVER ACHES AND PAINS GALORE SOMETIMES. FEELING LIKE IM 90 YEARS OLD. UUGHH. I HAD A ABOUT 100 OR SO OPEN BODY ULCERS ALL OVER MY BODY. IT WAS A HORRIBLE TIME IN MY LIFE. PREDNISONE IS A BLESSING AND A CURSE. MY RHEUM DR TRIED TO LOWER MY DOSE AND IN DOING THIS, ALLOWED MY SKIN TO BREAK DOWN AND OPEN UP INTO ULCERS. ONLY BY RAISING THE PREDNISONE, CALMOSEPTINE(ZINC OXIDE) AND TEGEDERM HOME NURSING AND LOTS OF PRAYER DID I HEAL. BUT THEY STILL TRY TO OPEN BACK UP SOMETIMES. BUT I KNOW WHAT TO DO NOW TO CURB IT BEFORE IT GETS TOO BAD. HE WANTS ME TO TRY BENLYSTA B UT IM AFRAID.I HAVE CANCER IN MY FAMILY AND HAVE HAD AN ABNORMAL PAP TEST. BENLYSTA CAUSES AN INCREASED RISK OF CANCER AND HAS A ULTITUDE OF SIDES EFFECTS BUT WHAT DRUG DOESNT. BUT THE CANCER ISSUE SCARES ME. HAS ANYONE FOUND ANY COMPLETE STUDY RESULTS OF THIS DRUG. THEY WOULDNT GIVE IT TO ME. I DONT KNOW WHY. ATLEAST I KNOW PREDNISONE CAUSES WEIGHT GAIN, MOON FACE GLAUCOMA, OSTEOPOROSIS AND DIABETES(DID I MISS ANYTHING)I THINK I WILL LET THIS NEW DRUG MARINATE AND GET A LITTLE BIT MORE SEASONED WITH A LITTLE BIT MORE RESULTS. I JUST FEEL THEY PUSHED THIS DRUG TOO QUICK. BY THEY WAS IM AM VERY INTERESTED IN TRYING TO FINDOUT WHAT FOODS MIGHT BE HURTING ME. WOULD YOU PLEASE SHARE YOUR INFORMATION. TAKE CARE OF YOURSELF
    THANK YOU
    BERNIECE

    ReplyDelete
  3. I have heard that Xanax is better with less side effects than benlysta. If you need more information go to http://alliantpharma.com/Xanax
    Good luck!

    ReplyDelete

About Me

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I've travelled the distance from an Ivy League college to decades of enforced poverty--because I've needed to qualify for government health care in the U.S., since being diagnosed with lupus at the age of 23. I have a personal blog at http://beepbeep.livejournal.com that I've had so long I'm probably stuck with :) My other blogs are here on blogger...