Benlysta Cure: Not Overnight but Over Time
73Benlysta: Patience and Healing
Benlysta is a drug invented by Human Genome Sciences, a pharmaceutical company that has been in the forefront of autoimmune research. Their latest drug, Benlysta, which at this writing is on the verge of approval, has been in clinical trials for the past seven years. I know. I’ve been on it since February of 2004 under its first name, LymphostatB
When I was admitted to the Phase II study, I had no idea that in a few years I would feel totally normal again. The drug Belimumab inhibits the autoimmune patient’s runaway B cells. In normal immune systems, the B cells have a normal course of life, then they die. But in many lupus patient’s immune systems, the B cells run rampant, causing arthritis, bone aches, hives, and fatigue. Curb the B cells, and the body can get itself back to normal. This “normal” however, does not happen overnight.
Around the blogosphere, I’ve been disheartened to hear comments like, “It takes six months! No way I’m waiting.” These people don’t get it. Benlysta is not a steroid masking the symptoms. Benlysta is not a magic analgesic hiding the symptoms. Benlysta keeps the B cells from destroying your body and allows your body to heal itself.
This is a breakthrough! I know this for sure as it’s happened to me.
These were my lupus symptoms in 2004:
Rashes
A peculiar shawl shaped rash on my back
Hives
Yeast rashes on my face
Giant erdicadia popping up on my head and face
Extreme sun sensitivity – sun burn from florescent lights, sunburn from sitting near a window
Reynaud’s Syndrome – tingling fingers, swollen and painful fingertips
Miocitus in my arm muscles – unable to lift my arms past my chest, loss of arm strength
Arthritis in my joints
Aching bones
Fatigue Syndrome
Esophagal spasms
Difficulty swallowing
Sudden fevers
Uncontrollable muscle twitching in my legs and arms
Neuropathy on the bottom of my feet, making walking painful
Low white cell count
Low red cell count
It is now December, 2010 and I have none of these symptoms. Back in 2004, I noticed a slight improvement in two to three months. My skin rashes weren’t as troublesome and I had a little less fatigue.
At the beginning of the study, I took an infusion every two weeks for three months, then every month since. Every symptom slowly improved, then disappeared. After three years, even the sun sensitivity left, yet doctors told me the sun sensitivity would never go away. They had never heard of or seen anyone’s acute sun sensitivity get better. But Benlysta seems to have allowed my body to heal from the inside out and even this dibiltating malady melted away. Benlysta is not a steroid! Benlysta is not a pain pill!
So to those people who whine and say, “I have to wait for results?” I say, how long did it take your body to get in this condition? If you decide to take Benlysta, give your body some time so it can come back. Healing takes time.
I am not a doctor, but if you want to ask me any questions about my experiences taking Benlysta, I will do my best to respond.
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What a godsend that you found Benlysta. I hope people suffering the way you did get access to this drug right away. Thank you for posting.
Thanks for your inspiring story...I am so happy for you...I am going to start the infusions next week...
I've been searching for people who have taken the drug. My rhuematologist wants to start me on it. I'm excited but a little scared too. As if a new drug isn't scary enough, I'm also terrified of needles (yes I know, how unfortunate a phobia for a lupus patient). My nephrologist wants to do a kidney biopsy first, and yes you guessed it - I'm terrified.
I'd love to hear from anyone on Benlysta and kidney biopsy.
Tory, thanks so much for sharing your experience. It gives me hope.
So glad to hear that you are starting Benlysta! I hope they give it to you every two weeks for a couple of months, then move to every three weeks, then in 6-8 months, do it every month. The study had us take it every 2 weeks for 3 months, then once a month from then on. Boy, did I feel tired in the fourth week...I could hardly wait to take it. That's why I think it should be 2 weeks, 3 weeks, then 4 weeks. If I were on my own and not in the study (I do it every 28 days), I would probably do it every 7 or 8 weeks.
Keep in touch. I'd love to hear your progress.
Tory
Hello:
I swear you could be my health twin. Reading about you has been an inspiration! I just started getting the face yeast infections. I hate it!! Ugly, itchy, burning menace. I habe not been able to find a place to administer Benlysta yet! Working on it hard though!!
Were you able to get rid of yeast before drug? By the by, my light sensitivity allows for only shaded incandescent lights. I am very imprisoned by it. No sunscreen works! 14 plus years in captivity by day!!
Dear Beachcats,
Oh the yeast! I had it on my face, around my eyes, and throughout my scalp. I found that Oxy10, an acne wash, did the trick. It's 10% benzoyl peroxide. Wash with it and keep in on for a few minutes, then rinse. Any acne product with 10% benzoyl peroxide will probably work.
And the damn sun! I wore Solumbra clothes and wanted to have a burka made. Miserable. After a year on Benlysta, even the sun sensitivity went away. The doctors at my study didn't think that would happen, but it did. I lived like a mushroom... always in the dark. I just got back from Cambodia where I climbed all over Angkor Wat in the heat and bright sun--not even a blush! Imagine that. I hope you find a place to give it to you. I just had my infusion the other day and I asked if they were giving it to any of their other patients. They said that the codes for the drug (I guess for insurance purposes) are just being set up, but they have two drug suppliers who will carry it. I think it should be "flowing" in a month or so. I'm so glad that this is going on the market. Good luck!!!
Tory
Hello again:
Alas, I am allergic to benzoyl peroxide. What and how were you diagnosed with yeast? Pityrosporum Folliculitis? Seborrheic Dermatitis? Folliculitis? What do you think caused it?
You ust be the happiest woman on earth! I will be if I can get out of the dark! Solumbra has made alot of money off me. Sunscreens do not work! I have offered myself up as a canary in the mine to test sunscreen. I have found some that offer a few minutes protection only.
Do you know of others who were helped like you by Benlysta?
Thank you!!!!!
My diagnosis for the yeast went like this: I was sitting in a waiting room and a doctor walked by and commented, "Looks like you have a yeast problem." Riveted, I said, Really? Is that what this is? She came back and looked carefully and said, "Yep. People with Lupus are prone to yeast." So I said, So what am I supposed to do? Wash with Gynalotramin? She said, "Might help." And I was off and running. That product worked only a little. Then I tried athlete's foot products. Then I remembered that when the yeast went from my scalp and then across my face I had used Oxy. So I tried it around my eyes and it worked! Then I bought a big bottle of Oxy and washed my hair. In 48 hours I was a new person.
So in answer to your question about what type of yeast... we never went that far.
I know of another woman in my same study who has been helped by Benlysta and have heard from a couple of people via the Internet. All these people have been in the study. So I know it works.
I know what you're saying about the sunscreens. They don't work. I even burned once inside the car, with sunscreen on and two layers of Solumbra, and through a tinted car window. Man, when you're light sensitive nothing protects you. BTW, my favorite sunscreen is WaterBabies.
Tori:
You always make me smile :) I can picture everything you say and it rings so true! Great writer ;)
I am allergic to BP! Odd it would work on a fungus? It is for bacteria so technically it might cause yeast overgrowth by killing competing bacteria right? I would try if I could at your suggestion. Driving me nuts!!
Can you please describe your rash? Mine is mostly scalp and forehead. Papules and pustules. Itchy and sometimes stings/burns. Red and rough. Scalp harder to see. Like little pimples but just red at times.
Great news there are more of you with Benlysta success stories! I think you are hilarious, bold, kind, giving and wonderful :)
That does sound like yeast. I noticed that it looked slightly different in the scalp as on my cheeks, where it looked like pimples) and around my eyes, where it looked very pink. Oh the papules and pustules in my scalp! Makes me wince to think of it. I'm not sure why Oxy worked. I used the big black bottle for acne and shampooed with it. Thirty-six hours later, after 2 treatments, I left a contrail of dead skin behind wherever I walked, spreading my DNA everywhere. The itch stopped pronto. I practically dropped to my knees in thanksgiving. I even carefully spread it below my eyebrows, let it set for a minute or two and then washed it off.
Yeast is also diaper rash and athlete's foot, so you might try those products, too.
Good luck! That itch is miserable.
Hi. I just went through my first infusion of Benlysta today. I wanted to thank you for posting your experience. I was searching online for people who have taken it so I ciould know what to expect but given it's new I didn't find much.
For those who are interested in it, I wanted to share me experience. I asked my rheumy to put me on Benlysta the day it was approved. I was her first patient who inquired about it so we learned about the process together. First and foremost was getting insurance to cover it because it is $30,000 a year. Thankfully my insurance covered it, but HGS has set up a service, Benlysta Gateway, that can help financially if you qualify. They'll also work with your doctor to get insurance approval. My doctor then had to refer me to an infusion center, which I then had to wait for them to get it on formulary, which finally happened this week. The prescription is a one hour infusion every two weeks for the first three times. After that, it's once a month. I haven't had any side effects, other than feeling groggy because they gave me Benadryl prior to infusion in case of an allergic reaction. I am thankful this drug was approved and am looking forward to it helping me.
Dear Cece,
That's great news! I felt achy and tired for a couple of days when I first started the infusions. I learned to schedule "down time" after the infusion so I could just crash and not feel guilty. I also noticed that when I moved out from every 2 weeks to every month, that last week before the infusion I felt the lupus coming back. Tell your doctor if this starts happening and see if you can move up your infusion to every 3 weeks and then move out. I've been on it now for 7 years and if I weren't in the study I would move my infusion out to every 7 or 8 weeks, but that's because I'm basically symptom-free now.
I'm so excited for you. Please write again in a couple of months and give us a progress report!
I was dignosed with Lupus in Feb of 2009. I have an adverse reaction to many of the medication to help with inflamation NSAID, asprin, steroids, etc. My medicine cabinet is full of prescriptions with includes the plaquinil and methotrexate. I take other prescribed medications to help counter act other side effects. My specialist has recommended Benlysta infusions and I am now waiting for my insurance to approve it. I havent found many postings or blogs others who have experience Benlysta. Thanks for your posting. IT gives me much hope and excitement that it will help me as well.
That's great. I hope your insurance approves!
Tory
Tory:
I finally had my first Benlysta infusion. The first office would not accomodate my photosensitivity. The second place was so high my co-pay would be $1200. I am not eligible for co-pay assistance.
While raising the infusion rate I did experience nausea, dizziness,lightheaded and felt very clammy. I took Clarinex and Tylenol before the infusion. We slowed it down and it took 2 1/2 hours but the side effects subsided. Each time we increased speed I had side effects.
I am tired and have insomnia but okay so far.I will keep you posted!
So glad you've started. I always felt "very loopy" for 48-72 hours, then felt more normal. Are you having the infusions every two weeks or once a month?
Tory
I was diagnosed with SLE 7 yrs ago. When i was first diagnosed i was really ill meds made me sicker. Then i moved away from colorado i immediately got better. I have a faced paced job and now I am a single mom of 4 teenagers. My lupus has become active again. My doctor has recommended that i take 4 weeks off from work. She has discussed benlysta to me. i have been researching online to get more info. Ive been having more infectins then usual now that im having a flare up right now. so im afraid to try the drug. but if i do decide to take the drug do u think i would be able to function at work? thanks so much for ur feedback.
This is not a steriod. The drug knocks down your B cells. I found that I had a mini flare for a couple of days, was tired, had bone aches etc.. Get the infusion on a Friday so you'll have the weekend to crash. Monday you'll feel tired, but you should be able to function. Good luck. It's a long process, but worth it!! No one believes that I was as sick as I was when they see me now. I'm full of energy. No aches, no fatigue, and even the blood work came back to normal.
Have not found much information on experiences. It would be good to have this to share with people as time passes. So here is mine.
I just had my second infusion three days ago. Just like the first time, I've lost the first three days afterward to exhaustion, severe joint pain, sinus stuffiness, and booming headaches. My physician says that it should be better in time. After reading others' comments, it seems that this may possibly be true to some degree.
It was good to read about help with neuropathy. I have increasingly had more problems with that on the very bottoms of my feet. I hope more of you will begin to leave accounts of your experiences here.
Jack-
Now when I have my infusion, I don't feel much. Maybe some tiredness that night (big deal!). The longer you're on it the less you feel. ALL my symptoms are now gone. No one believes that I still have lupus. What a miracle. Even my red and white blood count came back to normal. Just be patient. You're healing from the inside out.
Thartmann
Thanks for the encouragement. I have been very concerned. It has now been five days since my second infusion and it has been miserable. I've had symptoms that I've never had before. It's like inviting Lupus flares. Very little sleep, severe joint pain, numbness in feet and hands, shooting pains into my feet, and the feeling that my feet are cold (when they are not), severe headache, stuffed sinuses, and diarrhea at different times for five days now and exhaustion all the time make me wonder if this is for me. It was bad the first time, but this time has been worse.
Another problem is the lack of information regarding others who have had this occur. From what I've read, it doesn't seem that anyone has experienced so many symptoms and continued on with an eventual reduction in side effects. So far, I only feel much worse than I did before starting the infusions. Arava caused some serious side effects, but most of the time I felt much better.
Every couple of months I have an appointment with an elderly rheumatologist who running the study that I'm in--maybe I should say a rheumatologist of great experience! I was complaining (about 5 years ago) about my symptoms after the infusion. He told me that when he sees people who have no reaction to a drug that probably the drug will have no effect. That people who have a reaction (in this case, have lupus symptoms) will get some good out of the drug. That sure was true for me. I'd give it at least three months.
Thartmann
This is what I was saying. Why hasn't there been a place for people to read about people's experience. This has been the worst three weeks of symptoms for me since I was first diagnosed. Until today, I was unable to do much except complain. Today, it's just bad. But I was ready to quit completely and was going to demand going back to Arava. I will continue for awhile and see what happens.
Additionally, I have really bad allergies (mold, hayfever, etc.) and was actually really helped by Arava for that also. The physicians said that it was a very good additional benefit. I don't suppose this will be true with Benlysta, right?
I don't think so. Although, since Benlysta's job is to give you a protein you are missing, and that's the one that regulates B cells, and B cells, when they run rampant let your antibodies go wild, maybe after a while it would help that, too. I know I had big rash etc.. from shrimp and shell fish, but now that everything is calm, I no longer have that problem. Hmmmm.
Check out Benlysta Buddies on Facebook and ask to join. We're all over there chatting away about our Benlysta infusions.
Thanks for the information. I really appreciate it.
I don't do facebook, but don't need to go into that.
If it's ok, I'll just come back here and read from time to time.
Hello,
I just started Benlysta almost 2 months ago and I myself was looking online for other patients that have received Benlysta and what there experiences were especially at the beginning. I was feeling a little less hopeful, but reading about tory's comment that if you maybe are experiencing more lupus symptoms then maybe it is slowly doing it's job. So today, right now I am feeling more hopeful. I am my dr.s 1st patient in Benlysta and am going on 20 years living with lupus - so I figured what do I have to lose, nothing just to hopefully get better and have my life back or go on to the next thing if it doesn't work. But I myself am very patient, however it would help where there would be a place for other patients to post their experiences so I will join the Benlysta Buddies on facebook, but I am so glad that I found this site with you Tory sharing your story. I hope for you and all on this site the very best with your treatments to help fight this beast that we live with. Thank you.
Had third of three loading doses. This time the side effects were much less severe. Also, joint pain itself has improved a bit. Just thought I would record this. I would like to read about your future experiences nadiageo.
Tory:
So sorry to have gone missing in action. I have the unfortunate issues with my arms, hands and wrist so typing is impossible. I also have TMJ trouble which makes my voice activated software difficult as well. Sigh. I have had four infusions so far. my doctor was unwilling to go every two weeks except for the first three infusions. The cost is $400 for every infusion for me. I am not eligible for the co-pay assistance program. Since I am not working, I probably couldn't afford to go more frequently at this time.
The things I have noticed after my infusions are stomach pain ( mostly lower abdominal area), diarrhea for one week, anxiety, some insomnia, a fever for the first few infusions, rosacea made worse by that fever, and now constipation after the last two infusions.
I am hopeful the side effects will ease in time. I hope the well experienced rheumatologist is correct that this means it will help. The rashes with many diagnoses have been unbearable for seven months now. I think possibly the TMJ pain has subsided with the last infusion. I pray this is so because I have been on the soft food diet for a year now. My lupus manifest in photosensitivity so severe that I have been a prisoner out of the light for over 13 years now. The new rosacea, also photosensitive has compounded this issue because sunscreens, really anything but especially heat causes very severe flushing. It is almost impossible to sleep because of this. The head puts off a lot of heat. I have a theory that rosacea is really an organism and pray as my white blood cell count goes up this gets better. It is very disabling and unattractive in my opinion. Sigh again.
Your wonderful to be helping people like this!
I hope you're on your way to better health! I've noticed that doctors are prescribing 3 infusions two weeks apart, then once a month. Hope it works! I had the same sun sensitivity and after a year and a half it lessened and now it's gone. Whhoooo hooooo!
Tory:
I have been trying to find Benlysta Buddies on Facebook. I do a search and nothing comes up in groups. I am completely new to Facebook but I would think this is how you find the group? Do I have to be invited to join? I will be going to get my seventh infusion of Benlysta next week.
Thanks,
Beachcats
Send me your email at toryhartmann@hotmail.com and I'll forward it on to Benlysta Buddies.
Hi everyone,
I just started Benlysta too. 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.
My doc said that this lab does the most effective type of testing. Here is the link:
http://www.pharmasan.com/testing.php?CatID=5&CatNa
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! I still have symptoms, so I'm going to continue my Benlysta treatments. I got a fever after the first one, but everything else was fine. Take care. :)
Thanks for this. I've suspected the connection, but I didn't know they had a TEST! I'll share this with Benlysta Buddies on Facebook.
I am so glad I found this site! I took my first Benlysta infusion 3 days ago and was worried why I was I having all the aches/pains and stomach problems. I was concerned that the treatment wasn't going to work for me. That was until I read your response to Jack about the wise words from the older rhemutologist. I'm glad you are now feeling better Jack! There is light at the end of this tunnel. Thanks Tory!
My doctor has me on Plaquenil, Prednisone and Diclofenac. My symptoms are returning but labs show my lupus to be inactive. Would I be a candidate for Benlysta?
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Eve Visconti 18 months ago
What an inspiration to all with such a chronic and debilitating condition. Perhaps this treatment will also open the door to treatments for other auto-immune disorders. Thanks for sharing your story.