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mountaindreamer
06-17-2012, 07:07 PM
hi everyone.

i had my first benlysta treatment this past thursday, and i thought i would share my experience with any of you considering this treatment option. first, the treatment was approved by my insurance company, but i have not been presented with a bill, so i don't know how much they will cover. however, my treatment nurse gave me some financial aide providers for me to contact for assistance. I will keep everyone posted on out-of-pocket expense.

now, the process. I went to an infusion center at piedmone hospital in atlanta. it was a really nice facility, and the tending staff were as wonderful as the nurses and technicians at the cancer center when my daughter was going through chemo. the nurse first gave me a dose of benedry via the vein, and this really really burned. she said I could take over the counter benedryl; 30 minutes before my appt. next time if i want....i think i will try this, cause that really hurt.

the infusion itself took about 1 hr and 10 minutes....the dosage and time is determined by your weight. I left after the treatment and felt fine....even went out to lunch with my daughter. went home, and felt fine....that night, the effects hit like a lead ball. headache, stomach cramps, joint pain.....yikes, i was miserable. I had prepared for these, and had the various meds i would need to get relief from whatever hit the hardest. Friday was a really rough day, and friday night was bad. Saturady was a little better, but i could tell that some really strong chemicals were in my body. Saturday I had one occurrance of vomiting. By sunday, I was feeling a little better, but having some really strong joint pain.

My treatment nurse said she has a couple of patients who have been on benlysta for about 7 or 8 months, and they are seeing some real improvements. One patient, was previously unable to stay by herself because of seizures caused by headaches....now, she drives herself to the treatments....so, my friends....there might not be a cure, but hopefully there is something that will help us feel better, and give us a reason to smile most days.

i go for my next treatment on the 28th, and i will let you know how it goes.....

happy fathers day to all of you dads out there.

debbie-b
06-18-2012, 04:30 AM
Aww, you poor thing, that was a tough first time. Hopefully it gets easier and most of all, I am crossing my fingers, that you will see these improvements asap.

Debbie

steve.b
06-18-2012, 05:53 AM
good to hear you recovered relatively quickly.

heres hoping all goes well.

magistramarla
06-19-2012, 03:23 PM
Phyllis,
I hope that you are feeling better by now. I also hope that it will get easier as your body gets used to it.
Keep up the reports - I think that many folks here are interested to learn more about Benlysta.
Hugs,
Marla

OmaLaura
06-20-2012, 03:28 PM
Hi,

I am new to this forum. Was looking for someone who had previous experience with benlysta and stumbled on your post.

Phyllis, it looks like we are on pretty close to the same infusion schedule and are having similar side effects. I had my first infusion two days ago - Monday the18th. Had a wave of nausea during infusion and a metallic taste in my throat and thought I was getting off easy.

We stopped to get a bite to eat afterward and the nausea hit again. I'm a puker by nature and once I start, I don't stop, so I immediately took a Zofran. By the time we arrived home, the excruciating joint pain you mentioned hit, as well as an exhausted, drugged feeling. Things were pretty much the same yesterday. I am still having the major joint pain today -- kind of like my muscles and tendons are extremely rigid and are putting pressure on the bones. At least the nausea is gone!

As far as payment assistance, my rheumatologist's office arranged for co-pay assistance through Benlysta Gateway Co-pay Assistance Program before I started on the meds. They (benlysta staff) were so helpful and so sweet. Based on our income and my insurance company allowance, Benlysta gave me a credit card pre-loaded with $7000 to be used for medication costs the insurance co. doesn't pay. Thank goodness, cause 20% of $16,000 each month is a bunch of money!

Here's the co-pay assistance number. 1 (877) BENLYSTA (1-877-423-6597). Give them a call. Anyone there can help you!

Good luck with your 2nd treatment. I am hoping it is easier on you than the 1st one. (For me too!)

Gentle hugs,
Laura

rob
06-20-2012, 05:54 PM
Since Benlysta is still quite new, there isn't much information available yet here at WHL and elsewhere in regards to the practical aspects of being prescribed the drug to control SLE symptoms, as well as the pro's and con's of the infusion itself.

The staff here at WHL would like to say thank you to those of you who are posting your own experiences and results. The best way to build a base of knowledge is to have firsthand experiences documented.

Thank you Phyllis, Slim, Laura, and all the other members here who are documenting their own experiences with this new med.

Rob
Moderator

PS-Welcome Laura!

SleepyInSeattle
06-20-2012, 06:11 PM
I am also wondering if folks would maybe share what went into their decision to use Benlysta?
Things like - had you tried other alternatives and found them lacking? (Methotrexate, Cellcept, Imuran, etc)
How sick were you to consider this treatment - i.e., organ issues, etc - sounds like this medication is pretty miserable, so do you feel like it's worth the tradeoff?
How did you and your doctor come to the conclusion you should try it?

I don't mean to pry, but if anybody feels like sharing some of that I would find it really useful.

I hope you all have great results and that the side effects quickly subside!!!!!

OmaLaura
06-20-2012, 09:24 PM
Phyllis you mentioned the nurse gave you benedryl prior to giving the benlysta infusion. What is it supposed to help? or is it so you don't have an allergic reaction? Thanks and good luck with your next round!

Laura

[

QUOTE=mountaindreamer;106968]hi everyone.

i had my first benlysta treatment this past thursday, and i thought i would share my experience with any of you considering this treatment option. first, the treatment was approved by my insurance company, but i have not been presented with a bill, so i don't know how much they will cover. however, my treatment nurse gave me some financial aide providers for me to contact for assistance. I will keep everyone posted on out-of-pocket expense.

now, the process. I went to an infusion center at piedmone hospital in atlanta. it was a really nice facility, and the tending staff were as wonderful as the nurses and technicians at the cancer center when my daughter was going through chemo. the nurse first gave me a dose of benedry via the vein, and this really really burned. she said I could take over the counter benedryl; 30 minutes before my appt. next time if i want....i think i will try this, cause that really hurt.

the infusion itself took about 1 hr and 10 minutes....the dosage and time is determined by your weight. I left after the treatment and felt fine....even went out to lunch with my daughter. went home, and felt fine....that night, the effects hit like a lead ball. headache, stomach cramps, joint pain.....yikes, i was miserable. I had prepared for these, and had the various meds i would need to get relief from whatever hit the hardest. Friday was a really rough day, and friday night was bad. Saturady was a little better, but i could tell that some really strong chemicals were in my body. Saturday I had one occurrance of vomiting. By sunday, I was feeling a little better, but having some really strong joint pain.

My treatment nurse said she has a couple of patients who have been on benlysta for about 7 or 8 months, and they are seeing some real improvements. One patient, was previously unable to stay by herself because of seizures caused by headaches....now, she drives herself to the treatments....so, my friends....there might not be a cure, but hopefully there is something that will help us feel better, and give us a reason to smile most days.

i go for my next treatment on the 28th, and i will let you know how it goes.....

happy fathers day to all of you dads out there.[/QUOTE]

mountaindreamer
07-10-2012, 08:06 PM
hi everyone, so sorry that i have been negligent about keeping everyone posted about my benlysta treatments. I try to work during the weeks that i don't have the treatment, and am having some trouble juggling everything.

I go for my third treatment on thursday. The second treatment was actually easier on me. My technician is really wonderful, and we discussed the side effects after my first treatment. She made two modifications, she gave me more saline while giving me the benedryl, just to dilute everything a little. she also adjusted the unfusion time from 1 hour to 1 1/2 hour to try not to shock my body. Like the first treatment, i felt ok the rest of the day, then the symptoms started approximately 6 hours later. The stomach cramps started first, so i took a leucovarian (sp) and got some sleep. The headache and body aches were next, but they were not too bad. I was actually able to get out of bed and do some things the day after my second treatment. It still took me about 5 days to get my energy level back, and to get over the extreme fatigue, but the symptoms as a whole were better.

This treatment this week, will be my last one for the 2 week intervals. I a looking forward to once a month.

About how i decided on Benlysta. I have gone through over a year of extreme stomach (and entire mid section) pain. By process of elimination, we discovered that it was the mtx that had my stomach so tore up. I came off all of my medication for about 4 months (my dr. and i worked together on this). We took the opportunity to see exactly which one of my diagnosis was attacking the most. she kept close watch of my numbers, and i fought the pain. Whereas i thought my RA was the most active, it was really lupus attacking my joints, tissues, etc (according to the labs). My body does not do well with steroids so they are not an option for me. We looked at other meds such as humira, etc., but my dr. said many of the drugs used to fight RA actually aggravate lupus. So, we decided that benlysta was my only and last resort.....so here i am.

Laura, welcome to the site, please forgive me for not getting back with you sooner. I hope to be able to stay more connected.

About bendryl, yes, it helps reduce the risk of reaction to the infusion, but there is another reason that they use it, but my lupie mind will not let me remember right now. My technician said that there are several things that they can add to the infusion to help with side effects if my dr. orders them. so far, i am able to handle the side effects myself. The benedryl helps me relax and not be too emotional about sitting in that chair.

good luck on your treatment this week.

jmail
07-11-2012, 06:08 PM
They use benedryl for my IVIG infusions, which take almost 3 hours total, using a very similar technique, where I do Tylenol, then saline, then benadryl, then ivig, then saline flush. The benadryl as an antihistamine helps slow down or prevent you from going into anaphylactic shock if you do react. It gives the center caregivers time to provide emergency medical care, if necessary. It also reduces nausea, and relaxes you overall.

Keep them reports coming Phyllis.

btw, we've got a new kitten here, and the darn cat is trying to help me type... I don't need no shtinking help messin' up, thank you very much - lol

OmaLaura
08-18-2012, 03:14 PM
Phyllis,

So glad to hear your Benlysta treatments are getting easier for you and hope your 4th treatment went well for you too. Are you seeing a change in lupus symptoms - having less flares yet? If not, keep charging away, as my non-stop year long flare finally stopped and I have even gone down on my pain meds! The stuff does work and initial side effects do lessen and finally go away.

I wanted to thank you for your post regarding pre-medicating. It was that post which caused me to investigate further after I went into anaphylactic shock at home in the middle of the night after round 3. If it were not for your post, I would be off the Benlysta and most likely back in bed permanently.

My doc knew nothing about pre-medicating with benlysta - even tho she does so with enbrel, etc. I pushed and pushed and finally convinced her to contact benlysta herself to find out about pre-medication being advisable with this stuff.

Yesterday, scared to death, I had my 4th infusion. This time though, I received isomedrol and benedryl through the iv prior to running Benlysta at half speed. As of today, said doctor is no longer my physician.
note to self for next time - pure benedryl through the vein feels like boiling acid - next time, have nurse dilute it first!)

I had no anaphylaxis problems and am enjoying a rare Saturday at home with my husband as he babysits me (epi-pen at the ready) during my mandatory 48 hour watch. He usually works 80 hours a week, so this is really nice having him beside me for two whole days. (Not that I would ever go through the scariness of anaphylaxis again).

Thank you again for your timely life-saving post! This forum ROCKS!

rob
08-18-2012, 03:51 PM
Hi Laura,

It's good to hear that you got through your 4th Benlysta infusion OK. The past anaphylaxis must make it feel like walking through a minefield for you.

So they gave you straight IV Benadryl? Good grief! Benadryl is Diphenhydramine Hydrochloride. Hydrochlorides are basically a type of salt, and you know
what salt in an open wound feels like. How the people giving you the meds would not know this is beyond me.

Anyway, I'm glad you are doing well,

Rob

OmaLaura
08-18-2012, 04:38 PM
Sleepy in Seattle -

To answer your question on why some of us chose Benlysta, I can only speak for my own reasons..

For me, Benlysta was a last resort decision. Over the years, I had exhausted all other available meds, either after using them until they stopped working; trying them and having them not work; ruling them out due to allergy; or, like enbrel and some other biologics, passing on them after reading that the pharmaceutical company advises against usage if MS is in the immediate family. My mom and one of my brothers has MS.

For me, after 4 treatments of Benlysta, I have begun seeing positive results - a reduction in flare severity as well as length and my pain level has gone down!

My advice with Benlysta, is to get educated on the infusion procedure, initial side effects and make sure your doctor also knows as much as possible about the medication and administering the infusion, pre-medication options, etc.

Good luck Seattle, in your search for the right medication for you.

OmaLaura
08-18-2012, 04:55 PM
Rob,

Thanks for the welcome.

Yes, to say I was scared was an understatement! Never prayed harder and I did not sleep the entire night prior.

Not sure what the hospital pharmacy was thinking re: injecting the benedryl full strength. The nurse then put a hot towel over my arm in hopes of stopping the pain. I immediately threw it at her!

Regardless, next time will be through a different rheumy in their own infusion clinic, so surely all will go better. It HAS to, right?

jmail
08-19-2012, 08:37 AM
When I do my IVIG infusions, they start me on a saline drip first, then "piggyback" the benadryl with it, and when that bag runs out, then do the "real" medication and stop the saline. After the med is gone, then they do the saline again, and "flush" the lines for a few minutes. I go to a cancer center for my treatment, and they're great there. Maybe where you went Laura, they're not used to doing the med?...

Nonna
08-24-2012, 03:43 AM
Hi Phyllis just wondering how you are doing? Need to give you a call if I can remember
Hugs

Toni