It’s been a little bit since last we spoke – or at the very least it’s been a few days since I last blogged. I had all the intentions of getting my act together and throwing myself back into bloggy-town USA… then I was FINALLY approved for some medicine that I was very much anticipating.

SUBJECT WARNING: I am talking about medicine and medical treatments, including injections. If you are squeamish and don’t like needles – then it’s best to skip this post probably, and I will catch you on the next one!

Whelp folks, I’m back on Benlysta after a little over a 14-month hiatus. In those 14 months, I’ve been dealing with frequent or intensifying flares and other spoonie stuff that really kind of blows… but hey, here’s to hoping this stuff will help – even if just a little.

My chronic illnesses tend to feed into one another so for instance, when my SLE flares up it can trigger or add to a Fibromyalgia flare, make my Postural Orthostatic Tachycardia a little sensitive/overactive, (insert other minor things interacting too and throwing off balance HERE), and mainly resulting in a lot of suck for me. It’s hard sometimes to tell what is an SLE flare and what is a Fibro flare as there is a lot of fatigue and joint/overall pain with both…

One thing I do know is that either between the migraines, headaches, SLE stuff, Fibro, POTS, etc… is that I have not been without pain since March of 2011, and that bugs me, a lot. I miss being pain-free, but that rant is for another time, we’re talking Benlysta on this post.

Since my lovely little concoction of chronic illness joy isn’t standard, treating it has been a hassle. Most medicines that are tried and true for others barely take the edge off for me. There’s a lot of trial and error when it comes to my medication and has been ever since 2011.

Now, for those of you who have been following me since late 2015-ish know that I’ve done “the big bad Ben” before… although my last course of it was through IV, once a month administered at my old Rhemo’s office, which took a few hours each time. I  had issues a few days after infusion and before my next infusion. On one hand, it was nice being able to sit in the infusion office and connect with other Spoonies, but the ups and downs around the infusion were a bit much, and I don’t miss the massive bruises I would get post-infusion.

After a lot of insurance wrangling, hours waiting on the phone, tons of paperwork, and overall malarky about the US health system, I’m doing self-administered subcutaneous injections on a weekly basis. Thursdays, specifically. Hindsight being what it is and everything maybe I should have started on a Monday or Tuesday — especially with Thanksgiving and holiday festivities coming up but … whatever.

For those who don’t know, Benlysta is a form of immunosuppressive chemotherapy. And before you freak out, no I don’t have to take it because of cancer – it’s for the treatment of my SLE (aka LUPUS). It’s not the only chemotherapy that I am on, as I also take Cellcept on a daily basis, but Benlysta a little more potent and comes with a little bit more risk of other stuff developing down the line.

Basically, chemotherapy is an immunosuppressant. My lupus has the lovely little gift of making my immune system hyperactive with the added bonus of switching off the parts of my white blood cells that could tell the difference between foreign pathogens (like viruses) and my lovely organs. You don’t want your immune system attacking your healthy cells – so one of the forms of treatment is immune suppression, via chemotherapy. The downside to chemo or any immunosuppressant is that I’m more immunocompromised than usual… lucky me.

GO GO GADGET, VOGMASK!

Seeing as it’s been 14 months since my body has had Benlysta in it, I figured it would take a few weeks for it to get back and acclimated before I’ll start seeing results. So, back to the top of this post – after my first dose on Thursday last… it kicked my butt. I was down HARD for all of Friday and three-quarters of Saturday. It’s Tuesday when I’m writing this, and I’m still not 100% but again – it’s something that I was expecting.

As far as administering the injection, it was fairly straightforward.
Remove the injector from the fridge 30 minutes before taking the dose.
Remove the auto-syringe from the clear packaging.
Clean the injection area (either in the upper thigh or the fatty area of the stomach, similar to insulin injection sites) and grab a cotton ball or cotton pad for afterward.
Remove the cap from the injector.
Place the syringe on the location where you’re injecting, perpendicular to your body.
Press down, and the auto-injector will kick in with a click. Do not remove until the medicine has been completely injected. 
Watch the little window to see that all the medicine has been fully injected, there should be another click when it’s finished.
Remove syringe – apply cotton ball or pad to the area if there is any blood.
Put used auto-injector syringe in a sharps container.
Repeat the following week.

Pain-wise, it was a tiny little prick. Now, I have a VERY high pain tolerance, and needles don’t bother me in the slightest. I did bruise at the injection site on my thigh, but I bruise like a peach if you even look at me wrong. I’m probably not the best baseline for injection pain, but since I’m sharing, I figured what the hell… might as well.

The only thing that I found cumbersome about the syringe was that it is fairly large and Mr. Chaos and I had to go out to buy another larger sharps container with a wider opening so I could properly dispose of the used Ben-Pen.

(HA! See what I did there. I am so clever.)

I have to go to the hospital to submit bloodwork every few weeks just to keep track of my body AND to make sure nothing crazy is going on. My Rheumo said that it would take 6-8 weeks before I’ll start to see any results, which I knew going into it, so now it’s pretty much a waiting game.

My hope is that this is a WEEKLY injection, I won’t have the terrible highs and lows that I experienced from the Benlysta in infusion form. During the my course of infusion treatment, I would feel like I was hit by a truck for the first four or five days post infusion and then towards the last week leading up to my next infusion I would feel like shit again. I’m hoping that once things get established in my system the constant every week dosage will help minimize my downtime. /fingers crossed. 

Fun, not-so-fun side note: without insurance, those little syringes cost around ONE THOUSAND DOLLARS A PIECE! Yes, you read that right… 1K! Thankfully, there is a Benlysta Co-Pay program that I am a part of and that plus my insurance dramatically cuts my out of pocket cost. If you ever have to be put on Benlysta, get on that Co-Pay program and save yourself some money. It’s a little bit of a pain in the butt to apply, and for some reason, their phone number doesn’t go through sometimes, but it is worth it.

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So, here’s to hoping that this treatment helps me out because I’m to the point where I really can use all the help I can get. I know that it isn’t a miracle cure and it only helps the symptoms, but with Lupus, it’s the symptoms that get you. Heh.

I know that over the next few weeks I’ll probably not be as active or posting as much just because I have to give my body the rest that it needs while adjusting to the new medicine – so please pardon my absence if it happens. I’m going to try and work on some content to schedule for other days of the week and maybe even shoot and edit a video so that something can go up on Friday. Oh my!

In the meantime, I hope that you, my wonderful dah’lings, are doing well and that your days are filled with merry non-sucky adventures. Let me know if you’d like to see more “spoonie” content from me in the future… since I am a spoonie, I figure I should write what I know. I’ve got a few topics in mind and have a couple that was suggested to me via my Instagram “what do you want to see from me” questionnaire.

Oh and this should go without saying, but I am not a medical professional and what works for me, medical-wise, may not work for you. If you have medical questions, it is always best to talk to your healthcare professional. Mmmmmk?