Two Weeks after Benlysta Infusion #2

Hi everyone! It’s been a two weeksince my second infusion so I thought I’m about overdue for an update. This will be short and sweet as things have gone pretty well. It took me several days to recover from the second infusion though. Much harder then the first one if you have followed my blog then you know. If you are new I recommend going back to day one and catching up or nothing will make sense. LOL

While I have not had another huge spurt of energy like the first infusion, I do still believe the drug is helping me.  I definitely do notice a decrease in pain overall and have been able to cut back on my pain meds which I’m sure my liver is pleased with. I also noticed the lupie brain fog lifting which has been incredible. However, since this infusion I have more fatigue so I have added Provigil back to my regime and that has helped. I don’t know yet about my blood work and if my ANA or complements have changed as I don’t get it taken again until Friday and this will be my first comparitive draw since I began. The one thing I had heard it really helps has not kicked in for me yet and thats the discoid (skin) lupus. Mine has not changed at all.

As for side effects I have had some generalized burning in my chest I don’t recall having before and some spinal pain. I also have had some emotional issues like just being more sensitive then usual. Things that I would have just rolled off my back kind of make me sad now, this I know is directly the result of this drug cause it hit the second I started. My hair began falling out and it became straw-like so I cut about 4 inches off. The hair loss was not that obvious just clumps on the pillow and certainly in the brush, not too bad just the texture was horrendous.  I figured I would be proactive and make it healthier and easier to manage and I love it shorter! :-)

Feel free to leave comments on my blog about your experience if you want to join in or if you have any questions that are more specific I will answer whatever I can. Like I have said many times it is really hard for me to pinpoint what could be a side effect of Benlysta or just my SLE because they are so similar to what I already live with everyday.

Love and Lupie Hugs,

Nicole :-)

Day After Benlysta Infusion #2: WTH just happened?!

Hi everyone hope this finds you well. Ok so this post is titled the day after , but it is actually 2 days after as I could not blog from being a total train wreck yesterday. However, this blog will describe the day after infusion #2.

Wow what a huge hit I took! I woke up yesterday and thought I had been run over, no seriously runover. Unlike my first infusion where I was able to have some ginger ale and codeine to move around a little that was not gonna happen.

It is already such a blur so I will try to describe it best I can. Since most of the readers have lupus you should understand very well what I am trying to describe. Ok here goes…

I was so exhausted and in so much pain I was taking codeine every 3 instead of 4 hours. Yes my doctor approved it as my liver panel was fine and it did not exceed the maximum 3000 mgs of Tylenol in a day for emergency dose as there is only 325 mgs of Tylenol in a codeine #4.

I could barely lift my head off my pillow and had tremors. The kind that are more like jerky movements and not the shakes. So as you can imagine it made it very hard to walk when I could get up so I used my cane for stability to go to the bathroom, get drink, etc.

Then the headache kicked in, OMG the kind where you are pretty sure you may not even be a human being and some sort of alien living in a hallucinogenic bubble. That I’m fairly sure was caused by the dehydration due to lack of access to fluids because I couldn’t walk to the kitchen. My face was hard and purple and hurt like hell.

Then I started running a fever at around 12 o’clock, but it stayed right under the call the doctor if this happens on the discharge sheet at around 101.8. So I was hot, then cold, hot, shaking, sweating. All this mixed in with the other stuff mentioned above. Fever is a very common side effect to Benlysta and it makes sense. I am allergic to all NSAIDS so it is hard for me to get a fever down.

Lastly I was nauseous as expected, but my stomach is the one thing left on my body that is still strong. If I could have gotten up to get a cheeseburger I would have eaten the whole thing hahaha! Which is good because I was told that you are to feed, not starve this particular medication. Unfortunately though I starved it because nobody was home to help me eat. So I started to turn around at around 10 o’clock last night when the fever broke. I was able to sit up in a chair and the headache was much better I also had some heaviness in the chest and symptoms similar to pleurisy.

So here’s the deal…to anyone reading this without lupus you would think, wow what an idiot for taking this drug. Who would do that to themselves? However, everything I have described above is what is called a bad lupus flare. We get this several times a year sometimes lasting for weeks to months with no relief. In this case it was temporary and served a purpose. In most cases it does not and you just don’t know in true detail because I don’t talk about it except on support sites.

So to my fellow lupies…the best way to describe what happened to me yesterday is to imagine your worst flare EVER. The kind that sends you to the emergency room because you don’t know whats wrong and are assuming your organs are failing. Except you don’t go because you actually know what’s wrong, it’s your body fighting the bad cells, the ones that aren’t behaving like the other’s. It’s the Benlysta doing it’s job. So don’t be scared it’s nothing unlike what you have been dealing with for so many years already. Just be prepared with someone home  in case, but you may not need anyone. My first one I didn’t feel that great but was able to take care of myself. Better to be safe then sorry and have someone nearby. These symptoms I am describing were not in waves they were collective, all at once.

So today I woke up feeling pretty good. I just feel like I have lupus and not that I was hit by a train and left to die. I have been putting arnica gel on the IV site this time to try to avoid that awful embarrassing bruise that everyone stared at me like I was a frigging junkie. So far it’s working well, yay :)

I want to reiterate that this blog is about my experience with Benlysta and you may not have any symptoms at all, yours may be worse or they may be completely different. This is a blog about my experience and you can take from it what you need as you decide whether or not to take this route. For me it was an easy decision. Nothing to lose, but time. There are only so many years you want to spend in a bed and I was/am DONE with that. Feel free to comment directly on the blog if you wish, especially the readers on Benlysta. Also any questions for me I will surely answer if I can. It is absolutely amazing to see the amount of hits this blog is getting as it shows me the “traffic” and obviously this is a subject people want and need to know about! So I will keep going with the blog and since I don’t go back for another infusion for 28 days I may include some research information on the drug in the interim.

Ok so now I am going to go take a hot shower and make something to eat. I want to thank everyone who have been so supportive of this journey and I hope I am helping those of you curious about what may or may not happen while taking this drug. I am including pictures of the walls of my room at the hospital. The oncology unit has amazing theme rooms and the artist is so talented! This room was an Africa wildlife theme. She donated her time and free-handed every room, what a lovely and talented lady!

Love and Lupie Hugs,

Nicole :-)

Benlysta Infusion #2

Hi everyone hope all is well! So today was my second infusion and I wanted to fill you in. I went again to Tarzana Hospital driven by my mom and pretty much everything went the same as the first one.

I checked in at admitting at 8:30 and off I went upstairs. I requested a private room again due to my photosensitivity and the lights in the infusion room. No problem there and this time I got the wild animal room which was beautiful and I will share the pictures soon, something to look forward too lol. Unfortunately though my Benlysta was not at the hospital pharmacy so I had to wait until almost 11 a.m. for it to arrive. Meanwhile they fed me breakfast and I watched some TV and well Facebooked with all you guys, let’s be real:-)

So at about 10:45 they gave me the Benadryl, started the line and also saline. That infused for about a half hour until the good stuff arrived. She hooked it up and started slow and then bumped it up 20 minutes later to complete within the hour’s time. So it takes about 10 minutes for me and I feel a little dizzy and pretty tired. The dizziness goes away pretty fast, the tiredness does not. Then after its done and the IV is removed they make me lay there for about 20 minutes or until I feel up to get moving. Even still I can barely keep my eyes open, just typing this is exhausting. It’s weird though because then you close them for a while, get a little energy and then BAM eyes need to close again. This continues through tomorrow afternoon if memory serves me right.

After you have the infusion it is ordered by the doctor to push fluids. That means you drink, and drink, and drink some more. That is really the only time I get nauseous which is still going on because I have not finished the 2 liters of fluid. This is ordered by the doctor and also eating is a must and they recommend many small meals. This is because you have basically sent your body into war with itself and when you go to war you need to eat and drink to stay alive (doctor’s analogy not mine). I am also slightly off balance, but not too bad and I have some heaviness in my chest. The best way to describe the heaviness is like if you’ve been walking around outside in really humid weather all day. My spine also hurts, but that could be from the hospital bed, who knows?

So there you have it, nothing extraordinary or life changing, but I promised to let you all know especially my friends on Benlysta or getting ready to start. A special thank you to my dear friend Sky Desario-Moman for making me this amazing new Benlysta Blonde logo on top of the page, isn’t it awesome?! I love it thanks girlie you rock!

Love and Lupie Hugs,

Nicole :-)

Night Before Infusion #2- Let’s Do This!

Well, tomorrow will be my second infusion and I am ready! So far I have been really happy with it and any doubt I may have had before starting Benlysta are completely gone.

So there have been some changes since my last blog, but I am happy to say they are mostly good. A few days ago I began waking up feeling much better. In fact my joint pain is virtually gone and my energy level is way up. I think I am going to start sewing and knitting again!  I still have other lupus symptoms and injuries that will never be fixed from Benlysta and that was expected. I never expected to be a “normal.” I also of course still have issues with the associated diseases that come with lupus such as Sjogren’s, Meneire’s, bone spurs, blood disorders, etc. I have noticed more hair in my hairbrush and on my pillow so I am having some hair loss, but I have a ton of hair so I’m ok with that LOL. This is not a cure, this is a treatment and so far for me it’s a damn good one.

Now here’s the deal…I don’t know how long this will last and I don’t know if it will turn around and make me sick. I don’t know if this will backfire on me and I will regret it. What I do know is I could not live another day like that. Another day without fighting. I deserve a better quality of life. I deserve to be out of bed more then 10 percent of the day. I deserve a life again and so does my family who have given up so much for me. Oh and hey, how about my cheekbones can I have those back dammit?! LOL

So let me just say you better believe I am gonna fight like hell before this disease takes me! You have my promise on that. If I go down I will go down knowing I did all I could and with a smile on my face, no regrets. We have lost a lot of beautiful butterflies this year to lupus and they were fighters and each and every one of them passed leaving their families with the knowledge that they were warriors and they will continue to inspire me and get me through every treatment.

Systemic Lupus is a disease that does not effect two people the same, period. It effects almost every organ in the body so it is a “fluid” movement and is never static. So it also makes sense that the drug would not effect two people the same way either. All I can do is live in the moment and do the best I can and report back to you. I also know what is happening to me is not the norm, even though it has been reported that some people do better than others. I am doing exceptionally well on this drug. It could change in a heartbeat, but why not be positive and hope it won’t? Why not hope for the best possible scenario? It could continue to help, stop and do nothing or make it worse. Worrying won’t change the outcome, in fact it can only make it worse.

I hope this blog is helping those of you either on it already, considering starting, or with loved ones suffering themselves. I will see you all tomorrow, I report at 8:30 a.m. driven in style by my mom this time and I am ready to rock and roll, LETS DO THIS!

Love and Lupie Hugs,

Nicole :-)

Follow up doctors appointment #1

Hello everyone hope this blog finds you well! It’s been several days since my last post because I was moving my daughter back to college and to be honest not much has changed to report. I did have my first appointment with the rheumatologist today since infusion so I thought I would update tonight.

So he was very happy with the fact that nothing has really happened LOL. He said he didn’t expect anything to be dramatic and was especially thrilled at my lack of side effects. I can’t say anything highly unusual, other then the usual lupus symptoms, have occurred since the infusion. However, its hard to tell because the side effects of Benlysta are very much like what we lupies battle

every. single. day.

He gave me my flu shot, took some blood and put me back on Provigil per my request as their patent was finally up and it’s gone generic. Of course still waiting for insurance approval as even generic it’s beyond expensive. It’s a drug used for memory, alertness, and chronic pain. Fingers crossed the doctor convinces them it’s necessary because it is. Trust me on that one.

So my next infusion will be this Tuesday, September 25th. My Doctor thinks if I took the first one so well that the rest should go as easy. I keep hearing that’s not true, but I also heard how sick I was gonna be and I wasn’t so who knows. People keep saying brace yourself for number 3, I don’t know, but I guess that’s the point of this blog. We wait and see…

So in honor of my beautiful daughter who also is a lupus warrior tonight’s blog includes a picture of her at the hospital as she waited with me and held my hand through it all and also a picture of the wall in the room I had the infusion in. Paige found a purple butterfly right on the wall in front of my bed…a sign??? I hope so!

I hope this blog of my personal experience is helping those of you on Benlysta or preparing for the journey.

Love and Lupie Hugs,

Nicole :-)

The day after infusion one: Ginger ale and codeine

Hi everyone! My internet was down so I could not update you on the day after infusion one so here goes…

So the night of the first infusion went pretty well except for some chest pains . The best way to describe them is like after you go under anesthesia how you can taste the gas they administered and then you get those sharp pains that come and go in your chest. I also had really bad arm and shoulder pain on the arm I was infused.

It is really important to push fluids which made it difficult because it seemed the more I drank the worse my chest hurt. They wanted me to drink 2 liters of fluid within 3-5 hours! Not easy when you want to vomit and there is what feels like a 20 lb rock in your stomach. I did it though and it definitely helped so please if you have the infusions PUSH FLUID.

So then the next morning I woke up and wondered if anyone got the license number of the bus that ran me over. I felt like my entire body was in a vice. I couldn’t get up to feed the dogs and was so grateful my husband hadn’t left yet for work and could do it for me. So then about a half hour later I forced myself up and got some cold ginger ale and codeine…yep that did it. By no means was I doing a dance, but it really helped a lot and I was able to shower and pay some bills, etc. just daily junk.

The nurse explained to me that as days go by these things may progress because what I have basically done is create a war within my own body. I have pissed off the “bad guys” Let’s hope the good guys win!

I have had a low-grade fever and a rash for the last 24 hours or so, but nothing alarming. My face is pretty red, almost purple.  I think the hardest part about journaling this is the fact that so many of the symptoms from the infusion may not be from the infusion and just be the lupus itself.  I have this happen to me almost daily anyway. How do I know the difference, I mean that’s the reason I’m doing this to begin with because of these exact symptoms?!

Lastly I want to mention the mental side effects. Be prepared to be extremely emotional. Weird bursts of laughter, then crying, then anger,  wanting to cuddle, then head spinning around like Linda Blair. Warn the family, the police, the neighborhood, the pets. I’m just so lucky my husband gets it. Lastnight before bed I remember grabbing him to cuddle, then pushing him away saying he was too hot, then scooting him over, then asking him to come back then crying, laughing, and falling asleep…and he still kissed me goodbye this morning. I would have understood if he punched me in the eye instead! LOL

So for those of you starting these infusions here’s my advice thus far. Have lots of ginger ale, Gatorade, water, and PAIN PILLS.

Hope everyone has a good day and I will post another blog tonight if anything changes worth mentioning.

Love and Lupie Hugs,

Nicole :-)

Here is a photo of infusion site 2 days later. Also I would like to add if you have any questions I haven’t addresed please feel free to use the comments. If you would like to read through comments submitted already for each post you click the bubble on the right hand top of the page with the number on it.

First Benlysta Infusion 09-11-12

Hello everyone so today was my first infusion so let me start by explaining the process then I will tell you how I felt and feel now.

So my daughter and I got there and checked in at admitting and then went straight up to oncology. When we got into the infusion room there were several florescent lights so I asked to be brought to a private room which they had no problem with and were very accomodating. Once there they started IV and began pre meds of benedryl pills and saline through the IV. The saline ran for about a half hour and then they arrived with the Benlysta.

Once flowing, I didn’t feel any different at the beginning, however within 10 minutes I felt a bit nauseous and dizzy. They brought me some food and that helped a lot. So the infusion was given over an hours time with a smaller dose administered the first half hour and then turned up to complete the entire dose within the hour. The nurse was with me almost the entire infusion taking vitals and asking too many questions as I just wanted to rest. LOL

While I was a bit “out of sorts” I was able to walk out without the assistance of a chair after the nurse made me lay for about another half hour after. The nurse also wanted me to talk with some woman about a chemo survey as I was the only patient left and I felt bad, but just wanted to get home. On the way home I began to feel a few more effects. Some pain in my left arm where the injection was and some abdominal cramping. Then came the SLEEPINESS! I could barely keep my eyes open. I am still pretty groggy so I will make this short and write more tomorrow in detail hopefully well rested.

I want to thank my husband, family and friends for being so supportive and especially my amazing lupie daughter Paige for being with me every step of the way. I hope this has helped all of you considering this drug make the important decisions you need to make for yourself and yourself only.

Hugs and Lupie Love,

Nicole

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The day before Benlysta infusion #1

Hello everyone! I have started this blog to record through words and pictures my experience from day one on the lupus drug Benlysta. I have not seen many blogs on this drug and the ones I have seen appear to drop off so I hope I am able to follow through and record this journey from beginning to end to help others get information and for my own personal medical record. I start tomorrow morning Sept. 11, 2012 at 9:00 a.m. At Tarzana Hospital Oncology Center.

I will not bore you with my entire story, but I will say that I have had SLE for about 15 years (recorded) and have been on prednisone and between 12-17 other different meds daily for about as long. I say “recorded” because many of us had signs and symptoms way before diagnosis and I can remember things “lupus like” occuring in me since about 12 years old. I have been bed ridden about 90 percent of my day for over 2 years now in severe pain and because of other symptoms too lengthy to cover.

So I woke up this morning nervous as all hell. I took a valium and called the nurse who will be administering it at the hospital and that helped a lot. She was very nice and informative and I was also able to have my doctor change my orders to include a hydration bag during infusion to hopefully lesson some of the bad side effects. He had already ordered a Benadryl shot and Zofran so that was good.

My daughter Paige, who also has SLE, will be taking me and helping me document this through words, pictures, and possibly video if aloud. She is my sister warrior and having her hand to hold will help so much. She leaves back to school out of state on Sunday, but I will take what I can get. So here I go with nothing but positive thoughts and hope for a new beginning, not a cure because there is no cure, but a hopefully an improvement.

Also, I would like to give special thanks to our President and Congressmen and women who gave me this opportunity by allowing me to participate in the pre existing condition program. I was unable to get insured before after getting kicked off my plan for lupus and now I am back being timely treated again, hopefully not too late. Without proper treatment I do not believe I would make it much longer physically or mentally so for this I am eternally grateful.

Love and Lupie Hugs,

Nicole :-)