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Old 07-14-2011, 10:58 PM   #1
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Join Date: Jul 2011
Location: Wasilla Alaska U.S.A
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LittleSantana HB User
Benlysta

Hello Everyone,
Although I have had quite a few of the typical symptoms of lupus for a little over two years I was just recently told that lupus was in fact what I was suffering from. I have been on numerous meds to reduce the severe swelling in my hands and wrist. My hips, hands, shoulders, elbows, knees, and even the muscles in my thighs hurt more then I could even begin to imagine anything hurting quite this bad. After trying me on quite a few meds that have not worked at all for me I am finally going to be put on Benlysta next month. I am on strong pain medication and even the pain meds aren't working very well. Tomorrow I go to have my pain meds changed. My question to the group is what are the adverse effects of Benlysta that seem to be most common? One of my biggest concerns is the fact that I am an insulin dependent diabetic and have been since I was a teenager. Does Benlysta affect blood sugars also? Needless to say at this point I am more then just a little bit scared. I've been in and out of the ER due to the pain and from what i've read about Benlysta, although I am excited about the possibilites of finding something that will finally work for me, i'm also scared as to the possibilities of it not working or the bad side effects. Can anyone offer me some information and maybe some advice that can possibly help me? Any and all responses will be greatly appreciated !!!! Thanks.....

 
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Old 08-01-2011, 06:49 PM   #2
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lsarantos HB User
Re: Benlysta

Hi Little Santana,
I am on Benlysta, and a Type 1 diabetic as well. I have finished my loading dose (the first 3 doses - each 2 weeks apart)... So far so good. Makes me tired, and I'm usually down a day or 2, but otherwise ok. I haven't found it effected my blood sugars - my last dose, I had trouble with my bs staying around 300, but it could have been from anything.. Are you on an a pump?
Best of Luck,
Lilli

Last edited by moderator2; 08-01-2011 at 06:53 PM. Reason: please do not post a commercial website

 
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Old 12-10-2011, 07:00 PM   #3
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Sherrybsings HB User
Re: Benlysta

I just started Benlysta. 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.

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

Last edited by moderator2; 12-11-2011 at 06:47 AM. Reason: please do not post a commercial website, for any reason.

 
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Old 12-12-2011, 11:02 PM   #4
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Join Date: Jul 2011
Location: Wasilla Alaska U.S.A
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LittleSantana HB User
Re: Benlysta

Thank you so much for your response. When I had written this post back in July I was in the process of getting this insurance approval for the benlysta. Shortly after the approval I started my treatments. The loading dose really took every bit of energy that I had right out of me and caused my blood sugars to sky rocket like crazy. For between 5 and 7 days my blood sugars were anywhere between 350 and close to 600. I am indeed on an insulin pump and have been for about 6 yrs now. I guess I have to thank God that I was on the pump because the amount of insulin that I was taking per day was horrible. The first 3 doses of benlysta had me in the bathroom vomiting for the first two days but has since stopped. The nausea is still there but at least the small amounts of food that I manage to eat after the treatments are finally staying down. I have had 5 infusions so far and everyone of them have really caused havoc with my blood sugars. My endocrinologist has been working closely with me to get my blood sugars back in order while i'm having the high bs's after the infusions. I also have the CGM that drives me crazy after the infusions. It beeps all day and night for days. My rheumatologist told me that it could take as much as 6 months to get the full effects from the benlysta so I am patiently waiting. So far the swelling in practically gone but the pain is very much still there. My pain meds have been increased drastically since the diagosis of the lupus and even since i've been on the benlysta. Like I said, I still have a couple of months left before I get the full effect of the benlysta and hopefully then I can cut way back on the amount of the narcotics that i'm on and hey maybe one day i'll be able to go without the pain meds too. Only time will tell. Thank you again for your response to my post......

 
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Old 06-06-2012, 10:26 PM   #5
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Join Date: Jun 2012
Location: cloverleaf tx usa
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yellowrose61 HB User
Re: Benlysta

Quote:
Originally Posted by LittleSantana View Post
Hello Everyone,
Although I have had quite a few of the typical symptoms of lupus for a little over two years I was just recently told that lupus was in fact what I was suffering from. I have been on numerous meds to reduce the severe swelling in my hands and wrist. My hips, hands, shoulders, elbows, knees, and even the muscles in my thighs hurt more then I could even begin to imagine anything hurting quite this bad. After trying me on quite a few meds that have not worked at all for me I am finally going to be put on Benlysta next month. I am on strong pain medication and even the pain meds aren't working very well. Tomorrow I go to have my pain meds changed. My question to the group is what are the adverse effects of Benlysta that seem to be most common? One of my biggest concerns is the fact that I am an insulin dependent diabetic and have been since I was a teenager. Does Benlysta affect blood sugars also? Needless to say at this point I am more then just a little bit scared. I've been in and out of the ER due to the pain and from what i've read about Benlysta, although I am excited about the possibilites of finding something that will finally work for me, i'm also scared as to the possibilities of it not working or the bad side effects. Can anyone offer me some information and maybe some advice that can possibly help me? Any and all responses will be greatly appreciated !!!! Thanks.....
Hi Little Santana- I had my first benlysta infusion 2 weeks ago and had no sode effects. I too am diabetic and the only question as far as the diabetes was whether to give me medrol prior to the infusion since I was diabetic.

 
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