Benlysta

Hey there!!! If you would like to email me, i have some information you might find useful. You can find my email by clicking on my name in blue to the left side of this post.

Well...always know, i will be more than willing to also fill in a spot on the cruise ;-)!!

2 members of our local lupus support group are currently being treated with benlysta and have favorable results so far.  It helps some but is untested for those with kidney, heart and some other complications.

http://lupus.webmd.com/news/20110309/new-lupus-treatment-benlysta-faq

Some doctors are not up to speed with it yet so you need to have a doc who is really up to date and progressive.

Bill

Keep in mind that any treatments have potentially bad side effects but that not everyone gets them.  My 2 friends have been ok since getting benlysta and have seen a reduction in symptoms.

Bill

Hi, yes I have tried Benlysta for 4 months, and I will tell you it really helped my mobility, At night I would have trouble with my legs and have to use a cane sometimes, with the benlysta infusion I didn't need the cane. 

However, there is a concern with the medication Benlysta, I still had my infalmation in my chest and my immune system was very weak, one of the side effects with benlysta is a weakend ammune system and you see with Lupus you already have a weak immune system  I gained 18 pounds during the 4 months of infusions of benlysta and was depleated of potassum.  If you do try the drug its important to check your blood to see if you have been depleted of anything in your body.  Also, make sure your immune system of ok because with a even weaker immune system I found myself getting colds, urine tract infections etc. The weight gain is a problem I gained so fast.   Just pay attention to these things because they can lead to other problems.   

Sincerely,

advocate

  

Hi!

I just had my fourth Benlysta treatment and I have been feeling pretty darned great....the best I have felt in a really long time.  I am also reducing the Prednisone I had been taking.  Currently at 5 mg. per day.  The hope is that I can get off of it completely.  So far no problems with Benlysta except a little insomnia the first week or so.  It is amazing to not feel stiff and sore every morning and to not get so fatigued with every little thing that I do. It has even helped with the gut inflammation that I tend to get....I have put a little weight back on, which is a surprise!  I have even been able to get back to my exercise routine and hiking, which is something I have missed for a while.  I know that some people have had some serious reactions to this drug and it does not seem to be for everyone.  I would certainly talk to my health care professionals if I was looking for an alternative to some of the other Lupus meds.

Laura

Ernest what you say you experienced with Benlysta so did I.   there is one other thing I did not mention my stomach was really messed up I had pain and experienced burning pain in my stomach.  and i also had hair loss. Benlysta has to be premixed right before the infusion and that was a concern for me because humans are human and I remember my infusion bag looking different from the other bags of Benlysta I had had.  I think it it may have been mixed to strong I will never know. However, I became very weak and had infections. 

Hi Judy,


Benlysta does take several infusions to begin to respond to the new treatment from my experience, generally around 2 months to see how your body will accept it. Benylsta has been a God send for me, I've been taking it for 27 months; that said like many meds it does come with it's own set of side affects and reactions. In the beginning the infusions hit me extremely hard, my husband drives me 3 hrs to and 3 hrs from each infusion. I would sleep the entire way each time I was just so drained. Then after my infusion I literally could not function for 3 to 4 days. I had many reactions while they were administering the infusion which cause them to have to give me double the amount of steroids and benedryl than the average person. Each time they would have to stop my infusion until the hives went down and the feeling my throat was going to close went away, there have been times it took nearly 5 hrs to receive my infusion, doesn't make it convenient when your travel from so far (we go down and back in one day normally).

With each monthly infusion I began having more and more good days, so the issues the day of the treatment are worth me going through. I now even sit up most of the trip and actually do a little shopping while we're in the city if I'm having a good day. I get away with a lot more at my favorite stores too because my husband is so happy to see me up and about... Haha!

Feel free to message me with any questions you have. I know lupus itself can be lonely and my experience has been even lonelier since beginning Benlysta because it is so new and not everyone is on it like they are plaquenil for instance. I had to have a chest port put in 2 weeks ago because the veins in my arms have given out (it's not just from the Benlysta for me, I've had many many blood transfusions, IVs, etc and I have small veins). Going through the port being put in has been very very hard because I don't have anyone to talk to about it and I go for my first infusion using the chest port next week.

Best of luck and I truly hope you feel better and better with each infusion!

Hugs

Melissa

Barbara,

Thank you so much for you're reply, it really helps being reassured by folks who can relate to my current situation. I'm not sure how long the port will have to be in place, the radiologist said "until I was cured or no longer taking treatments. " of course I just laughed and replied "did you read my chart? I have lupus, there is no cure at present unfortunately. And unless I go into remission or the Benlysta stops working the infusions will be on going." He stated the port will last a life time if needed, which I am grateful for on one hand, but pray I don't need it forever.

I hate that you've been hit so hard medically Barbara, you are one amazingly strong woman. Thank you for taking time out of your day to share your experience.

God Bless You,

Melissa

HiTgo,

I am on Benlysta. Actually headed for an infusion this afternoon. I also take cellcept, which is another form of immunosuppressant or chemo if you will that is a step up from metho. I have continued both for over two years now and it seems to be working quite well.

My son also has lupus and is on weekly metho shots, the shots do a number to his GI tract but really help otherwise so our Rheumy has him alternate by putting the metho into a glass of juice one week and injecting the next. Please don't do this without speaking to your doctor first. It has really helped my son get some relief from the GI issues.

I don't know where you're going for your infusion (I go directly to my rhuemies ofc, they have an infusion center there) but if it is at your doctors ofc ask the infusion nurse to have the doctor stop by and ask him/her about your metho and explain your concerns. This will put you at ease and provide you with the answers needed going forward.

Best of luck to you today and always!

Melissa

Tgo

I hope your infusion went well and your doc was able to relieve your concerns about methotrexate as well. Sounds like you've had a rough year, thank you and your husband for your service to our country. It's hard enough being a spouse of a military person and being away from home, being sick mad having lupus on top of that has to be overwhelming, I'm so sorry.

Please let me know if you have any questions, I'm here to help where I can.

Hugs

Glad to hear everything went well Tgo! Thank you for your well wishes! Merry Christmas to you and your husband, wishing you a pain free holiday as well!