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Oluwa
04-17-2012, 07:21 PM
My new Rheumba is suggesting Benylsta...has anyone recently been prescribed it...and if so, how is it going? I read the few prior blogs, but anyone lately infusing with it?

Currently, I am on scaryroids (Prednisone) and Plaquenil and my flair without a Coach Bag is not slowing down...so, I would either have to increase steroids or give the new drug a whirl. I had allergic reactions to MTX and Imuran.

I also read the sales report on this drug and I am wondering..humm...are physicians touting it for the companies? http://www.hgsi.com/latest/human-genome-sciences-reports-progress-with-commercialization-of-benlysta-and-announces-2012-goals-at-jpmorgan-healthcare-confe-4.html

Scaryroids or Benlysta? I have been thinking...Lupus is an incurable disease. Will it be cured in my life time...and if so, how old will I be? Do I want to feel good, normal now and see what unfolds in years to come...Or do I just drag in out of mild to moderate flairs without my Louis Vuitton heels. With scaryroids I feel best at 20-30mg.

So many changes in my life in last year...it all has come home to roost..in me, in my body now. Just as I was starting to reconstruct, I fell off the cliff physically..ever since they probed my cavities...upper and lower endoscopy last month. Like who wakes up during it? I did. I quote the nurse when I asked did something happen in there. My intuition. She said, " You squealed and asked where am I?" What the heck..Deliverance flashed through my mind, I squealed?...who squeals? My mind has been scarred ever since. As I left I recalled feeling being probed in the hindquarters, but it feels like I said, "What are you doing?" I don't think they did any thing inappropriate, I just feel I was in incompetent care. They couldn't keep me sedated properly.

I mentioned to the Rheumba, after the scope my flair without my Prada sunglasses increased. She said, she thinks the stress of the solution and the quantity of liquids I had to drink also ignited it.

But anyway....anyone, today doing Benlysta? Helping...? Side effects? When did you feel better? Better than prednisone? Details..I love details.

Thank you...Hugs. Be well..keep well.
Love,
Oluwa

Cripes, my fat fingers were in the way and my reading glasses were dangling from my pearls around my neck...the title should read Benlysta...I think..is that right? Who am I...where am I?

Oluwa
04-17-2012, 07:32 PM
HGS sales data suggest that more than 40% of key accounts have initiated treatment with BENLYSTA as of the end of December 2011, compared with approximately 30% at the end of the third quarter. Among the community-based accounts that are the largest infusing practices, approximately 50% have begun to purchase BENLYSTA. Among key hospital accounts, which are hospitals with very large lupus cohorts, more than 40% have begun to purchase BENLYSTA. In market research, more than half of rheumatologists report that they have begun to prescribe BENLYSTA for SLE patients; this is an encouraging leading indicator for further increases in purchasing accounts.

And also.what does this mean, after it has already been approved??..I have a pea size brain today and I am unable to decipher it...










Study to enroll over 800 adult patients with SLE
Will evaluate once-weekly subcutaneous injections of an investigational formulation of belimumab plus standard of care vs. placebo plus standard of care

ROCKVILLE, Maryland, and LONDON, UK – December 15, 2011 – Human Genome Sciences, Inc. (Nasdaq: HGSI) and GlaxoSmithKline PLC (GSK) today announced that dosing has been initiated in BLISS-SC, a new Phase 3 trial to evaluate the efficacy, safety and tolerability of BENLYSTAŽ (belimumab) administered subcutaneously (SC) once-weekly to autoantibody-positive adults with active systemic lupus erythematosus (SLE).

“Initiation of this new trial investigating a subcutaneous formulation of BENLYSTA represents an important step in our ongoing clinical development program,” said H. Thomas Watkins, President and Chief Executive Officer, Human Genome Sciences (HGS).

steve.b
04-17-2012, 08:37 PM
a couple of others who are on benlysta....
lhuntd, thepaynes and adventure racer.

there is also information about financial assistance for benlysta.
http://forum.wehavelupus.com/showthread.php?11243-new-here-but-was-considering-Benlysta&p=104625#post104625

Oluwa
04-17-2012, 08:52 PM
That you, Steve for the financial info. According to my insurance it will just fall under my copay/coinsurance terms regardless of the drugs or procedure. I am fortunate there. Yay!

I'll look about for our fellow Lupies posts in the forum...thank you.

Be well, keep well....
L.,
O.

magistramarla
04-21-2012, 09:11 PM
Hi Oluwa,
I can't help you on the Benlysta, but I have a colonoscopy story. My daughter Meghan had one at the age of 13. The gastro was thinking that she might have Crohne's. She woke up during the procedure and tried to fight them off. They had to give her a whopping amount of drugs to keep her under. It took her a very long time to sleep it off afterward.
It turned out that she only had a kink in her colon and the procedure took care of that.
Hugs,
Marla

Adventure Racer
04-24-2012, 02:36 PM
I am taking Benlysta. I've had 4 infusions. Most of my Benlysta buddies say it takes 8-9 infusions to see much difference. The first few days after infusion, I am exhausted. But in general, I * think the Benlysta is starting to help. I used to have malar rash everyday..... Now only couple times a week. Overall brain fog seems to be improving, and fatigue seems to be a tad better. No impact yet for me with the painful joints/muscles.

Oluwa
04-28-2012, 03:00 PM
Hi Marla...That is a story. I think I just laid there and let my mind wonder, felt like I was in a weird dream. I am glad it was just a kink and they were able to straighten it out for Meghan. OX

Oluwa
04-28-2012, 03:07 PM
Thank you for sharing, Adventure Racer...sounds promising. I hope your symptoms of pain are beginning to improve. Brain fog can be so debilitating, happy to know you have improvement there. On the Internet there really is much info on the new drug from patients.

Do you also take Plaquenil too? I read Benylsta is used in conjunction with it. I return to my Rheumba on May 31st to discuss it further...

Be well...hugs

mountaindreamer
05-17-2012, 05:56 AM
hello again, my old friend.

I have been out of pocket for over a year now, suffering with reactions to meds, horrible flares, the april 28 tuscaloosa tornado and rebuilding my home town, plus traveling every week for work. It has been a strange year, but I have finally found my way back to my friends here at WHL......I have thought about you so many times, and have sent you hugs accross country. I hope you are still around and will get back in touch with me. I am about to start Benlysta myself, so I will read the full thread and then respond.

Can't wait to be back in touch with you and to catch up on everything.

mountaindreamer
05-17-2012, 06:11 AM
Hi everyone. To all of the new guys, welcome. I am so glad that you found this wonderful group of people who are always ready to help us work through the frustrations of living with lupus.

I was on MTX for 3 years, then started having incredible stomach pains, cramps, swelling, and all of the digestive issues that go along with this. I lost over 50 pounds, which did not bother me, but it did my drs. I took myself off all of my medicine.....yep....i have been almost a year without taking any pills (except for Dilaudid for pain). In February, I took myself off of my MTX because i just could not make myself take a shot that was going to hurt my stomach any more.

My rheumy had me to go in for the upper and lower invasion (like Oluwa), but I was lucky and did not wake up. They found some things, but could not find anything to justify the stomach issues.....

the strange thing....after 2 weeks of being off MTX, my stomach issues all stopped.

I went in to my rheumy yesterday, and we have decided to go with Benlysta. This is how we made this decision.

Whereas I felt that my RA was flairing the worst, actually, it was the lupus, just really attacking my joints. She said the RA medications can aggrevate lupus, so she felt these were not good choices. I refuse prednisone, and just live with the pain. The weight gain from steroids causes my joint pain to go out of the roof.

We decided on Benlysta because it is the most effective with lupus control, plus, it appears to be the last effort in disease control.
I am a little bummed by my new treatment plan, because I don't like moving to the "last resort", but I am going to give it a try.

I understand that I will go every two weeks for the first 3 treatments, then I will go once a month. I was told the infusion takes about 5 hours. I don't have all of the insurance information yet, so I don't know the cost, but I know it can be incredibly high without insurance.

Oluwa, have you started your treatments? We will hold hands (accross the country) and go through this together.

I am so happy to be back with my life line buddies.

luv to all of you.

steve.b
05-17-2012, 06:24 AM
..........I am so happy to be back with my life line buddies.........

welcome home.
as promised we kept the front light on.
good to see you here again.

LenaT14
05-17-2012, 06:43 AM
I inquired about it on Monday but the Rheumy said to steer clear for now because of the side effects and opted for LDN therapy instead. There is a FB group called Benlysta Buddies that I have heard about through MD Junction that may be of some help. Apparently the allergic reaction occurence is pretty high....best of luck!

Adventure Racer
05-17-2012, 02:42 PM
I currently take 15mg prednisone, 400 mg plaquenil, 20 mg methotrexate, and the benlysta.
i have SLE, sjogerns, and raynaud's.





Thank you for sharing, Adventure Racer...sounds promising. I hope your symptoms of pain are beginning to improve. Brain fog can be so debilitating, happy to know you have improvement there. On the Internet there really is much info on the new drug from patients.

Do you also take Plaquenil too? I read Benylsta is used in conjunction with it. I return to my Rheumba on May 31st to discuss it further...

Be well...hugs

Adventure Racer
05-17-2012, 02:49 PM
Hi everyone. To all of the new guys, welcome. I am so glad that you found this wonderful group of people who are always ready to help us work through the frustrations of living with lupus.

I was on MTX for 3 years, then started having incredible stomach pains, cramps, swelling, and all of the digestive issues that go along with this. I lost over 50 pounds, which did not bother me, but it did my drs. I took myself off all of my medicine.....yep....i have been almost a year without taking any pills (except for Dilaudid for pain). In February, I took myself off of my MTX because i just could not make myself take a shot that was going to hurt my stomach any more.

My rheumy had me to go in for the upper and lower invasion (like Oluwa), but I was lucky and did not wake up. They found some things, but could not find anything to justify the stomach issues.....

the strange thing....after 2 weeks of being off MTX, my stomach issues all stopped.

I went in to my rheumy yesterday, and we have decided to go with Benlysta. This is how we made this decision.

Whereas I felt that my RA was flairing the worst, actually, it was the lupus, just really attacking my joints. She said the RA medications can aggrevate lupus, so she felt these were not good choices. I refuse prednisone, and just live with the pain. The weight gain from steroids causes my joint pain to go out of the roof.

We decided on Benlysta because it is the most effective with lupus control, plus, it appears to be the last effort in disease control.
I am a little bummed by my new treatment plan, because I don't like moving to the "last resort", but I am going to give it a try.

I understand that I will go every two weeks for the first 3 treatments, then I will go once a month. I was told the infusion takes about 5 hours. I don't have all of the insurance information yet, so I don't know the cost, but I know it can be incredibly high without insurance.

Oluwa, have you started your treatments? We will hold hands (accross the country) and go through this together.

I am so happy to be back with my life line buddies.

luv to all of you.


Mountain dreamer -- I haven't heard of the infusion taking 5 hours. Typical dosing is 1 to 1.5 hours. IF you have some reactions, then they may slow down the drip to take 2-3 hours. As for costs, pls search this forum. I've posted info before on funds from benlysta to help pay for costs! It is making it affordable for me!! I'm sure it can help you too. :-).

Sounds like even though you are on your last resort for meds, you are able to work and travel -- that's awesome!,

Iwish you all the best going forward. And remember, our doctors need to be our partners-- and we need to work WITH them on med changes. :)

slim
05-20-2012, 02:50 AM
I havent posted in months, too much crap, going on in my life and not enough energy to post, read emails, just wanted to be left alone. Anyways enough ranting I am on Benlysta and not seeing a big difference yet. I stil have to take my usual meds pred 10mg daily, mycophenolate, plaquenil, mtx inj once a week, lyrica, topamax. magnesium, bactrim,vitd. At the beginning of this med. I would get extemely sick, (like a bad flare-up) the very next day. I told my rheumy n found out other pt, was having same issues, so now i get a cocktail prior to infusion (1 tylenol 500mg, 1 benadryl n infused with solu-medol 125mg) then infused with benlysta. hope this help message back if u have any questions or need to talk. slim

Oluwa
05-26-2012, 11:59 AM
Well, hello stranger, Phyllis. I had been keeping my eye out for you on FB. How are you today my friend? Hugs. I have been worrying, wondering about you. Sorry it has been a rough year for you, Phyllis. Sometimes we have to take a break from what ails us.

Benlysta...no I have not started the infusions yet. May 31st is the tentative date. I just had a dental implant installed Tuesday...sigh...see photo album. My front tooth broke off below the root. I am not sure if the Rhuemba will postpone the infusions because of the implant. I am thinking she will not want me to use Benlysta because it may cause my immune system to lower and reject the implant and/or cause an infection. I'll keep you posted..

Lovely to read you again....tight hugs with love..

Oluwa
05-26-2012, 12:07 PM
Adventure Pacer...Oh no, I thought taking Benlysta was suppose to be used in lieu of prednisone and MTX. I am sorry it has not helped to eliminate the other drugs. Did they say why not or are you tapering off on the MTX and prednisone? Be well...hugs.

Saysusie
05-27-2012, 04:45 AM
Hello Sweet Oluwa;
I am sorry that I have not personal information regarding Benlysta. I've read articles/studies that pretty much state what you mentioned about the drug. Like you, I thought that it would lower the need/use of corticosteroids and/or immunosuppressants. However, I imagine that everyone reacts differently to this drug, just like to any other.
Please let us know if you do decide to start the treatment on the 31st and keep us posted about how it works for you.
I am so sorry to hear that you are in a flare and that you woke up during your procedure. My sister-in-law had the same thing happen to her and, like you, it left her with a feeling of being invaded. I guess that it happens more often than we'd like to thing.
I am, however, sooooo happy to see you here. You know that you are always on my mind and in my heart. I hope that you feel better very soon and I am sending you warm hugs to welcome you home and cheek kisses to let you know how much you are cherished.

Peace and Blessings
Namaste
Saysusie

Oluwa
05-27-2012, 10:42 PM
Thank you, Saysusie. I will let everyone know how it goes, if I start. I had a dental implant because I broke my front tooth off (was capped and snapped) so I am not sure my DR will let me start the drug. I am wondering if the drug being an immune suppressing drug it may cause the titanium implant to be rejected by my body? From the dental procedure, I feel my body already flaring. Every time I have anything done to this carcass I get sick. I am spirit..I have a body. It's getting a bit wearing toting it about I was flaring for a month after the scope...ugh now this. I should be thankful life doesn't happen all at once...I am but some days I am not.

Thank you for the welcome home love..muah, muah...cheek to cheek. I have not felt home anywhere since Bola died....sometimes I don't know where I belong anymore. I feel like a statistic and no one knows my name. Just a feeling, not reality. All is well....will be. A work in progress. Bola's birthday is this Friday. The days leading up to are the hardest. I think about his life, so short, so young..I cry for all he will miss, but then he is probably filled with such greatness, such love, more than anyone of us can imagine...more than anyone could have loved him here, more than I do and at a time I thought it was impossible. Because of that I feel such happiness for Bola even amongst my emotions of longing and missing him. I will try to dance for joy for him on the anniversary of his birth date...Bola did have a wonderful life..he did more in his short life than many do in their life time. I was blessed he loves/d me....I am missing him.

Tight hugs...squeeze...love and muahs.

magistramarla
05-28-2012, 11:00 AM
Hi everyone. To all of the new guys, welcome. I am so glad that you found this wonderful group of people who are always ready to help us work through the frustrations of living with lupus.

I was on MTX for 3 years, then started having incredible stomach pains, cramps, swelling, and all of the digestive issues that go along with this. I lost over 50 pounds, which did not bother me, but it did my drs. I took myself off all of my medicine.....yep....i have been almost a year without taking any pills (except for Dilaudid for pain). In February, I took myself off of my MTX because i just could not make myself take a shot that was going to hurt my stomach any more.

My rheumy had me to go in for the upper and lower invasion (like Oluwa), but I was lucky and did not wake up. They found some things, but could not find anything to justify the stomach issues.....

the strange thing....after 2 weeks of being off MTX, my stomach issues all stopped.

I went in to my rheumy yesterday, and we have decided to go with Benlysta. This is how we made this decision.

Whereas I felt that my RA was flairing the worst, actually, it was the lupus, just really attacking my joints. She said the RA medications can aggrevate lupus, so she felt these were not good choices. I refuse prednisone, and just live with the pain. The weight gain from steroids causes my joint pain to go out of the roof.

We decided on Benlysta because it is the most effective with lupus control, plus, it appears to be the last effort in disease control.
I am a little bummed by my new treatment plan, because I don't like moving to the "last resort", but I am going to give it a try.

I understand that I will go every two weeks for the first 3 treatments, then I will go once a month. I was told the infusion takes about 5 hours. I don't have all of the insurance information yet, so I don't know the cost, but I know it can be incredibly high without insurance.

Oluwa, have you started your treatments? We will hold hands (accross the country) and go through this together.

I am so happy to be back with my life line buddies.

luv to all of you.

Phyllis,
It is so very good to have you back with us. I hope that the Benlysta works for you. I know what you mean about the MTX bothering the stomach and making you feel worse. I took myself off of it because my new rheumy only checks bloodwork once a year and I didn't feel safe, since the liver needs to be checked much more often while on MTX. The only med that I'm taking for the AI diseases is Plaquenil, and it bothers my stomach a bit, too.
Please keep us informed about how the new drug works for you. We also all appreciate your wisdom and like to read your posts.
Hugs,
Marla

magistramarla
05-28-2012, 11:09 AM
Thank you, Saysusie. I will let everyone know how it goes, if I start. I had a dental implant because I broke my front tooth off (was capped and snapped) so I am not sure my DR will let me start the drug. I am wondering if the drug being an immune suppressing drug it may cause the titanium implant to be rejected by my body? From the dental procedure, I feel my body already flaring. Every time I have anything done to this carcass I get sick. I am spirit..I have a body. It's getting a bit wearing toting it about I was flaring for a month after the scope...ugh now this. I should be thankful life doesn't happen all at once...I am but some days I am not.

Thank you for the welcome home love..muah, muah...cheek to cheek. I have not felt home anywhere since Bola died....sometimes I don't know where I belong anymore. I feel like a statistic and no one knows my name. Just a feeling, not reality. All is well....will be. A work in progress. Bola's birthday is this Friday. The days leading up to are the hardest. I think about his life, so short, so young..I cry for all he will miss, but then he is probably filled with such greatness, such love, more than anyone of us can imagine...more than anyone could have loved him here, more than I do and at a time I thought it was impossible. Because of that I feel such happiness for Bola even amongst my emotions of longing and missing him. I will try to dance for joy for him on the anniversary of his birth date...Bola did have a wonderful life..he did more in his short life than many do in their life time. I was blessed he loves/d me....I am missing him.

Tight hugs...squeeze...love and muahs.
Oluwa,
We are happy to be your family here - you truly belong. I wish that I could reach through the web and give you a real hug!
I had an implant done while I was taking MTX. Nobody said a word about that possibly causing my body to reject it. We moved right after I had the thing put in. A few months later, I was having extreme headaches and it was throbbing with pain. It fell out when I was brushing my teeth one night. The gum has healed over and I'm much happier without it. Luckily, it was a back tooth, so it isn't visible.
Teeth that break easily is a part of having Sjogren's. So far, I'm lucky that my front teeth (mostly capped) still look decent.
I hope that you have doctors and dentists who will work together and guide you correctly on this.
I'll be thinking of you this week.
MANY HUGS,
Marla

Oluwa
05-30-2012, 01:27 PM
Hi Slim...thank you for the reply. I am sorry it is not going as you expected. Has things change any since you posted?

How many infusions have you had thus far?

It seems from my reads, many have had allergy reactions to it. Have you started to have more energy, lesser use of the prescriptions drugs you are taking? Are you able to drive home afterwards alone? I see my RA tomorrow..

Be well...hugs

Oluwa
05-30-2012, 03:56 PM
Aww thank you, Marla...hugging you back.

mountaindreamer
06-02-2012, 05:41 AM
awe....hello hello Marla and Marijo.....i have thought about everyone so much....it is such a comfort to be back.l

Marijo....I am sorry that I did hot see your messages before Friday. I hope you found a few minutes to dance and smile in Bola's honor and in memory of his love for you. I have not been on fb in over a year. I kept getting viruses from the games, so just gave it all up....ha ha ha....

Did you start the Benlysta? My insurance company has not approved the treatment yet, so I don't have a start date yet....we will walk through this together. I promise not to loose touch with you again....even the distance accross country can't keep us from holding hands.

Marla....so nice to hear from you. I agree with you. Sometimes we h ave to do things that our bodies tell us to do....we know what is best for us.

hugs to everyone.

Oluwa
06-05-2012, 08:17 PM
Phyllis...I danced physically but my heart and spirit were elsewhere. No, I canceled my Benlysta appointment. My grief, dental implant and lumbar pain ignited a flare, so I went tumbling thereafter and have been on a steady roll since :( They scheduled me again for July 11. Funny, too sick to go to the DRs.

I am a mess...

Hugs with love..

mountaindreamer
06-10-2012, 02:29 PM
oh oluwa,

so sorry that you had to pospone your treatment date, and i am especially sorry that you are in the middle of a terrible flare.....i hope you are better today.

I start my first benlysta treatment this thursday. I am in the process of trying to prepare myself for the side effects, and am looking at information on the "cocktails" that some drs. are prescribing. Kinda scary though. I spent so much time in the infusion center with my daughter, the thought of going back in that room just makes my insides shudder. Trying to get my head in the right place.

hope you regained your strength this weekend.