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09/14/2011 06:07 PM

Benlysta(page 2)

sunkissedcherry22
sunkissedcherry22  
Posts: 73
Member

I started on Benlysta in May and have had similar results as Nurseblack im finally the first time in 4 years able to lose weight and keep it off and I feel amazing I even have started going back to school. I do still have bad days an as a lupie i realize ill have to deal with it but Im not off cellcept and even lowest ever on prednisone and i feel better then I have in years and considering in four years ive had heart surgery both lungs operated on and 2 strokes that is saying ALOT
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09/14/2011 06:17 PM
mumeva
mumeva  
Posts: 6150
Group Leader
I'm an Advocate

That is amazing....I am so happy for you that you finally feel this good. I pray that this continues for you.

Eva


09/14/2011 11:19 PM
hawakeita
hawakeita  
Posts: 1913
Senior Member
I'm an Advocate

Sunkissedcherry, your post is so inspiring. I hope that others considering Benlysta, or those who are scared to, will realize the potential it can have. I am amazed at all you have gone through to see where you are now. Truly inspirational.

01/05/2012 06:56 AM
trixxieb
 
Posts: 7
New Member

I have a quick question.. Can you drive after an infusion? I start mine Tuesday and I may have to drive myself. I am not sure if I should just take a cab. I am thankful for all your posts about your experiences, as they have been helpful.

01/05/2012 08:46 AM
mumeva
mumeva  
Posts: 6150
Group Leader
I'm an Advocate

trixxieb......I have driven myself to an infusion but I only live about 10 minutes from the office where I have this done. I usually have someone take me as sometimes I get pretty tired afterwards as I am given two tylenol and one benadryl. Everyone reacts differently, I know those that use Benlysta will give you some suggestions.

Eva


01/05/2012 10:17 AM
Lynnette1212
Lynnette1212  
Posts: 1167
Senior Member

It depends on what pre meds you get (benedryl). I also am very dizzy after my infusion, along with agitation. So, I would have someone drive you until u get used to it.

01/05/2012 11:07 AM
trixxieb
 
Posts: 7
New Member

Thank you.. They said to take Zyrtec and my Reglan. But when I asked about the agitation they really didn't seem to know. Oh well, I guess I will find out.

02/16/2012 08:10 PM
smiles10
Posts: 1
New Member

I'm new to the forum and am going away for the weekend so this post will be short. I was a participant for almost 3 years in the Benlysta clinical trials and continue to take it. My Lupus was moderate when admitted to the trial. As to improvement to my health, energy levels are slightly better and cognitive ability is better. I haven't had any serious rashes since about 6 months into the program. The infusions do not make me tired and once hooked up to the meds, it takes about an hour for the drug to be infused. Benedryl puts me to sleep and I'm glad I don't have to take it before the infusion. I still take Plaquenil. My hair loss is bad. I was experiencing this before beginning the clinical trial and it's worse now. I don't know if the Benlysta has made it worse or if it is heredity I use Toppik to help cover up the loss and it is the only thing that has kept me out of a wig.

04/23/2013 09:44 AM
TagMan49
Posts: 1
New Member

Hi All

I just joined to learn more about Benlysta. I have been using a Rife machine to help a friend with Lupus and we are seeing definite results but her doctor is pushing like crazy for her to go on Benlysta. When I look at the number and the seriousness of the side effects I am really scared for her.

It will have to be her decision of course but I may get her to join so she can communicate and learn.

Hugs to all

Tom


04/23/2013 10:08 AM
redhairali
redhairali  
Posts: 3742
Group Leader

Tom, welcome to the group, what's a Rife machine? We have few Benlysta users here and most of then are doing fine. With any "new" drug you will always hear the ultimate worse that can happen. For the people that is has helped, it has turned their lives around.

Alison

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