It's been a busy week medically, and it's only Wednesday!!
Monday night was my first Cosentyx injection. Due to my allergies, we had kind of planned on going into an Urgent Care Clinic, let them know I would be doing the injection, and simply do the injection in a room or somewhere private, but near the clinic in case of an immediate allergic reaction - especially if I became anaphylactic. My Simponi injection a few years ago produced a frightening throat swelling reaction within 10 seconds of the injection, while I was all alone in my apartment, on Halloween. I remember that last part because when I arrived at a clinic I remember thinking that I might very well die on a day when everyone I am entrusting my life with looks absolutely ridiculous and in costume. That is probably how I will go out eventually - a comical medical situation to the very end.
Anyways - so our initial plan was to do the injection at a clinic.
That's not what we did.
The more I thought about it, the less logical it seemed.
If I had a swelling reaction I could immediately give myself a shot of Berinert. I placed my Epi pen directly beside my sharps container, out of its case, in case I did become anaphylactic. Plus, this time I wasn't alone. Furthermore, Ryan was already nervous enough for the both of us, and making a big production out of it just sounded like it would make ME more nervous, and then I would swell simply from the situation and wouldn't be able to differentiate between anxiety from the process or an allergic reaction.
There have also been two hospitals that have experienced several hospitalizations from an outbreak of the flu - and that could be intensely dangerous for me.
Talk about going in circles!! What a mess!!
So Ryan, being the stubborn but supportive saint that he is, relented and we decided I would do it at home. I got into clothes I could be seen in, got my purse and a bag ready in case we had to call an ambulance, and we were prepared.
Luckily enough, the injection seemed to go well. I was lightheaded for about 20 minutes and my face flushed bright red for a while, but it is a heavy-duty medication, and a lot of it. And since I've opted for the injection-ready 'pen' (where you put it to your skin, press a button, and it jabs you itself), the medication was injected over 10 seconds.
My heart was racing, I seemed to experience mild swelling overnight, and I had trouble sleeping even though I was utterly exhausted - but that's not bad considering how badly it could have gone. The swelling indicates I probably do have an allergy, but it is so minor that I might very well be able to take this medication for several months before I would need to stop taking it - which means I may get some benefits out of it for a few months!!! My previous biologic trials lasted 3 years on Remicade, 8 months on Humira, and 6 months on Enbrel. Perhaps Cosentyx will give me a few months of reduced symptoms.
The next morning was my Berinert injection. That has been going amazingly. I love the symptom relief I have been experiencing.
Usually I end up sleeping until around 3pm or longer after Berinert, but my racing heart and restless body (from the Cosentyx) woke me up around 1pm instead.
Last night I slept really poorly - restless, heart racing, bad nightmares, and then a major Raynaud's episode. My feet and legs up to my knees were white and numb and it took HOURS to get the circulation going enough to feel warm. I even slept with socks!!!! (I don't even sleep with socks on when I am camping in below-zero temps)!
Today was less about me and more about Dex. He had his yearly checkup, vaccinations, and a couple new lumps checked out. My poor puppy keeps getting lumps similar to my abscesses. So weird!! He took it really well though and was less anxious this time, but after we got home we played a little too much and he ended up vomiting. Poor thing. Now we are just resting with cuddles watching Little Women.
I *should* do my Methotrexate tonight, but I think I will opt to do it tomorrow instead. Then Berinert again on Friday. Then the same schedule of injections each week for the next four weeks. That is a LOT of heavy-duty medication entering my system. It's a good thing they are all beneficial...
I am SO grateful for all of these medical advances. And for coverage!! One syringe of Cosentyx (which is half of what is usually prescribed - as they are being cautious because of my history) costs somewhere near $3,000. These biologics are insane.
I am grateful for where I live and the relationships that I have and the scientific breakthroughs I get to try. Pretty incredible how far we have come in treating some of these debilitating illnesses.
:)