Posted a bit in the Last thread, but will share here too. The nurse I saw is newer, not sure when she started, but she wasn't there a year ago. I think she's still learning some things, she hasn't seen the more concentrated version of the medication, I don't know if she's even done blood product training before. She has said a few things that sound wrong to me.
I get my subcutaneous stuff on Monday. It could have been done today, but the order wasn't put through. I actually didn't do my IV yesterday, going to the 4 days twice in a row (instead of a 3 and 4) as I had hoped I wouldn't have to, but did it before going out for lunch with Chemguy after my appointment. I thought that maybe since today was scheduled I could have done a real subcue shot at the training appointment, but I will do that at home next week.
I'm confused as to how I actually get Firazyr, a new to me option for attacks. It's what my official training was for today. Anyone with a prescription can get 2 free samples from the company. The cost/dose is $2800, lower than what I had seen posted before but still expensive. I do have confirmation from my insurance company that they will cover everything but the dispensing fee. The free doses will be mailed to me. I thought all were mailed, but the nurse said I do the orders through a pharmacy.
I'm a little bit annoyed. The drug company, Shire has a program called One Path that sounds pretty good. They can only go so far without the prescription though, and the clinic hasn't sent anything to them. I actually contacted them shortly after firazyr became an option to get things going with insurance just in case. I contacted them last week to get things set up, the nurse was surprised I did that already, it's pretty common for patients to not even be aware of the them until they contact you because your doctor's prescription has gone through.
Overall, I'm really happy with my new options. Subcue shots 3x a week starting next week. Will still have my IV option for attacks. For a bad throat or abdominal attack or a mild throat attack while out I (will) have firazyr. That's a bit of security to me. No need to mix it up, just attach the needle to the syringe. No need to get a vein. I really like having that quick easy option, especially if a bad throat attack ever springs up on me. Also much easier to carry around. I'll have to figure out when I want to take both with me, but for something like running errands carrying 2 preloaded syringes in a case I can easily throw that into a purse without the need to carry an extra bag. If I'm going to spend the day at my sister's I would probably choose to bring both options.