Benlysta???!!!

[Terrier_Lady]

Hi, have any of you tried Benlysta? I live in the US, and it's my understanding that it was FDA approved over here first. Now they are using it in Europe and Canada as well. Anyways after the last year of having my lupus drastically progress to the point I had to quit work and have lost most of my ability to do even the smallest of tasks, I was sent to a new rheumatologist. Upon going to my first appointment I was so relieved to find a rheumi who really wanted to help me, said there is hope, and said that my lupus should never had got this far out of hand.

The new office seems to be extremely knowledgable and on top of things, they also have experience with this fairly new treatment. He said that he thinks Benlysta is the best option for me as it is specifically for treatment of lupus where as most other treatments are borrowed from treatment of other diseases. It also works to stop the lymphocytes specifically responsible for causing damage from lupus rather than suppressing your entire immune response, such as other immune suppressants do.

Anyways I've got approval from insurance and am set up to start my first infusion next week. Then it's every 2 weeks for the first month and then once a month from then on. I've done research on it and for some they say it's like a miracle drug, putting them in remission when they have never been in remission and others having no results or bad reactios to it.

I'm so hoping this will be the answer for me as for the past year I've been in a constant flare state with hardly any relief. Hoping I can get some aspects of my life back. Just feeling excited, hopeful, but also a bit nervous as to how my body will respond side effects wise. Some people report feeling terrible for a week after each infusion and then good the rest of the month and a few say they had no side effects. So I guess I was just curious if anyone has experience with it or how common it is of a treatment outside the U.S. as it was just approved in 2011 it's still pretty new here, a lot of doctor offices haven't heard of it and this new rheumi has been the first one to tell me about it.

[Hidden]

Well, that sounds very positive - hope it will work well. Please keep us posted. I agree about the downside of immunosuppressive whether we like it or not. hope more promising drugs will be on its way (and I hope so) Thanks xx

PS benlysta.com/risks-side-eff...

[Barnclown]

great question! i love your attitude and hope you get some good replies - like omega, i want to say: thanks, good luck & please let us know how you get on

i especially like the clear concise way you explain the advantages of how benalysta works, and the significance of lymphocytes (i've been busy reading wallace's wonderful but science-heavy lupus & sjogrens books over the weekend (what a way to spend valentines weekend!) so am all stirred up re lymphocytes (yet again! every time i read these rather academic books, i get stirred up, and the more time that passes + the more experience i gain via my own response to treatment + by being here on forum learning from everyone...the more stirred up i get.....+ it's 4 1/2 years since my infant onset sle finally got daily systemic treatment, so at 61 i've had a lifetime of lymphocytes partying hard all over my bod))

sorry i have no experience of benalysta...and i'll be following this thread closely to read the replies

xo

[tennissenior]

Please let us know how you are after your infusions. One of my rheumys recommended it - my hematologist immediately said NO. He didn't like the side effects, none of which he told me about. Let us know how YOU are - sometimes doctors are a little too cautious and their answer is "monitor your condition." That hasn't helped - I'm no different than I was 4 years ago - just have a lot more little holes in my veins!

[Terrier_Lady]

Thanks for your replies, I will definitely keep you guys posted on my experience with it. Tennissenior, my rheumi actually sent me to a hematologist before starting treatment because I also have beta thalassemia and my blood has always been very abnormal even for thalassemia, so they wanted to ensure it would be safe. He said that he didn't see any problems with the Benlysta making my blood condition worse and that I should do whatever I need to in order to get the lupus under control.

I know that when you read the side effects link it can sound a bit scary, but If you compare it to methotrexate treatment or other immune suppressants, the side effects are quite similar, with some others even being worse. I'm hoping this will work, as the next step for me is entering into the immune suppressant category. I've just been sick for so long, and been on 15-20mg of pred non stop for the last 9 months and its just too damaging to my body and still not controlling things enough to where I can function even ok at all.

My rheumi also said that with his patients he has found that Benlysta has controlled the disease much better for his lupus patients than methotrexate did. He said methotrexate seems to work better for his RA patients. I was glad to hear this as before seeing him my other doctors wanted to start me on the methotrexate and after reading so many mixed reviews about it I was really hoping to not have to go there. Overall the reviews I've found have been positive for Benlysta with some even calling it a miracle drug putting them in remission when they had never experienced that before. But there are always the people it doesn't work for or the ones who have a extremely bad reaction. So time will tell, it just hasn't seemed to become that popular yet because it is fairly new, but also expensive so without insurance really isn't a option and for some still isn't affordable even with insurance. I'm still waiting to see what we will have to pay per infusion, and also waiting to hear back from the drug company to see if we qualify for the co pay assistance program.

So still a lot of things are up in the air, I will keep you all posted and so hope this might be a good option for some of us and hopefully this will just be the beginning on many new treatments specifically for lupus. Two days before the big day! Feeling hopeful but also nervous. Hoping I don't have a bad reaction and can make it home ok. We live 2 hours away from the infusion center, so it might not be a fun car ride home. Thanks for your time and feedback.

[Hidden in reply to Terrier_Lady]

Hi there. Im in the US and my rheumy wants me to start Benlysta. I've been in a flare for about a year or more, with no relief. I was taken off Prednisone after being on it for 3 years and my body is not happy about it. I have been on Plaquenil non stop and I have recently been on Azathioprine. My numbers are not improving and the pain from RA is returning with a vengeance. So, now my Rheumy says that Benlysta will make it all better. I've read the side effects and I have to admit they are scary. I wanted to know how you are feeling after taking Benlysta and if it's working for you. I would appreciate any information you can share.

Thanks,

CosmoLupie

[Terrier_Lady]

So I had my first infusion. We showed up and the infusion nurse explained how everything worked, and told me what to be aware of and to let her know I felt that I was having any reactions at all no matter how mild. Then put the IV in with saline while she mixed the Benlysta. It comes in a powder in a vile that they mix with saline, once its all disolved they put it in your IV. A little while after she started administering it, I started to feel a little bit of itchy/tingling around my mouth and like a mild headache was coming on. She said that is a common histamine reaction. So she stopped it for a little bit and we waited to see if it would resolve. Benlysta is a biologic medication, it's a protein that attaches to those lymphocytes I was talking about which then let's them go through the dying process like they are supposed to because I guess our bodies aren't making enough of the protein allowing these cytes to continue on to long and damage our bodies. At least this is my understanding, not sure I am explaining it completely correctly. Anyways they told me that the nice thing about Benlysta is that it's a human protein, where some of the biological meds are made from rat and rabbit protein so you have a much higher risk of anaphylactic reactions to those.

So to continue on, she stopped it, the reaction started to clear up and we continued, at first at a slow pace and then, she would increase the speed that it went in as long as I was having no reaction. Total it took about 3 hrs for the entire infusion. I go back in 2 weeks for my 2nd and then another 2 weeks for my 3rd. After that the loading period should be complete and then I will go once a month from then on. I haven't had any horrible side effects. Been very tired and my body is sore. I do feel like I have more fatigue than usual and my body soreness feels a bit different but not worse than before, it's also hard to tell if this is just from the infusion or also from the trip as I'm always in bad shape for a few days if we have to take any long car rides.

All in all I feel blessed as some people report, vomiting, migraine, and feeling like they have been hit by a truck for about a week after each infusion. That if extra tiredness and soreness is all I have, I will take it. I did feel nauseous on the way home, I had to lay down in the car to combat it, but that can happen after I've spent awhile in the car anyways, so very hard to tell what are my usuall symptoms and what's from the treatment.

It will take about 5 weeks before I really start to see results but can already tell that some things seem better. For example today I had to drive to our doctors office to pick up a perscription for my husband. It's about 45 mins away, some times I can't drive that far by myself and today I made it there and back, dropped it off at the pharmacy, looked at some stuff at the store and felt ok. To the point I ended up visiting with my dad a bit before resting when I got home. This is pretty huge because I havent even been able to go grocery shopping by myself for the past year. My dad couldn't believe how well I was doing. My husbad has pretty much had to take me everywhere and was worried about me driving that far today but had no choice as he had to work. I even later went back out to pick the script up, and got caught by people I knew, which kept me out for honestly way too long. So I am feeling a bit ill now but, I don't know how long it's been since I could even think about doing that much in a day.

So I am feeling hopeful and will keep you all posted on how the next infusion goes and all my progress. Would be nice if this could be a option to get some of our lives back.

[Purpletop in reply to Terrier_Lady]

Sounds really encouraging. I'm based in the UK but my rheumatologist said that if the current medication is not effective anymore, he'd suggest Benlysta. I see that Benlysta is useful mainly for skin and joints - I have Neuro symptoms as well, so I'm not that sure this would be that useful for me.

Good luck with it and let us know how you get on.

[Terrier_Lady in reply to Purpletop]

Yes it has been encouraging. It's definetly worth a try. And I also have neuro symptoms as well. If you really look into it they just say they haven't proven the safety in severe active central nervous system SLE or severe nephritis SLE.

But it works with your other medications to significantly reduce disease activity. Actually talking to the infusion specialist about it, they say the goal is to reduce activity as much as possible so you can get on the lowest dose of other meds possible and get some quality of life back.

Can I ask you what meds you are currently taking that aren't working right now? I'm so hoping I can just continue on with this but in the event I don't respond well I would like to gather info on what is working and not working for others.

[Purpletop in reply to Terrier_Lady]

I'm on CellCept (mycophenolate mofetil) at the moment. It isn't as much as it isn't working but that it gives me side effects that are difficult to bear sometimes - such as muscle pain, muscle twitching, face swelling, neuropathy in my feet.

Let us know how you get on, I'm very interested that you also have neuro symptoms and that Benlysta could resolve them, that's a good thing to know!

[ND66]

Hi. I'm new to the board and just had a few questions. I understand that Benlysta is not funded by NICE but does that mean its not available at all in the UK? Can someone still get it and pay out of pocket?

My wife and I live in the US and she has been on Benlysta for years. She was actually part of the trial study before it was approved. She has SLE and the Lupus usually attacks her kidneys. I know everyone is different but Benlysta has been a game changer for my wife. She is stable, off of Cellcept (i hope i spelled that right) and is on 2.5 mg of predisone. For whatever reason, if she gets off of predisone completely she has a flare so all her doctors keep her on 2.5 mg. She gets 1 treatment a month.

I have a dream job lined up and from the sounds of it, we will have the opportunity to live in and work in London BUT i won't take at the risk of my wife's health. So I am hope someone here can provide feedback whether it's available in the UK, even though NICE has not approved it for general use. I read it's also available in Germany, anyone know if I work in London how complex it would be for my wife to travel to Germany once a month for her treatment?

[Terrier_Lady in reply to ND66]

Hi ND66,

Well I'm also in the US so I can't answer all of your questions but I do believe it's a available in the UK as one of the replies said she was based in the UK and her rheumi said that if her other meds didn't work that Benlysta would be a option. And I've read of other in the UK getting it. Although I don't know what program that is thru. I from my research on it it was approved here first but has since been approved in Europe and Canada. Your post is realy encouraging to me as I haven't seen huge results yet. We just got thru he every 2 week loading period and are now starting once a month infusions. They are saying in the next few months I should start seeing results. This first month has been a bit discouraging because I'm so wiped after the infusions and we are so ready for some change. I have been able to lower my pred to 10mg per day where I was at 15 so my rheumi says that's signs we are going in the right direction. But it's so nice to hear from actual people who it has worked for. I hope you can get it all worked out so you can take this amazing opportunity. Would be so fun to be able to move to London.