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First Injection!
Finally! I had my first Spinraza injection yesterday, 5/02/2018. With all due respect to FDR, “A date which will live in infamy!” Well, at least for me. There have been some administrative hurdles at Hopkins in Baltimore, but 5 of us were in the first wave of adult patients treated there yesterday. Very pleased to start the treatment. When Hopkins called me Friday to advise the hurdles were (for now) behind us and scheduled me, I hung up and cried. Nothing else seemed appropriate.
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14 Replies
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Congrats Mike! I can totally relate to insurance battles (as can all of us), but I’m glad you were able to finally get started.
How did the injection go? What method did the doctors use? Thanks for sharing.
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Yay! So happy for you. Keep us posted on your journey. #1 is in the books. Did it go as you expected?
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Thanks Kevin and DeAnn!
It went reasonably well. They had fluoroscopy available, but tried the LP without it. After the “pin cushion” experiment was over and they actually started using fluoroscopy, it went fine. About two hours in recovery, no headache and just a little discomfort (more of a light ache) in my back. Popped a few Tylenol and by the next morning, I was feeling fine. I jut got back from my weekly aqua therapy session, and no concerns. I had checked previously and again on Wednesday about the pool today, and the doctors said there were no risks or concerns from the LP, as long as it wasn’t the next day.
Will definitely provide updates.
Silly question: They asked me if I wanted to keep the Spinraza box. I said, “No thanks.” Is that a common question and if so, how do you all feel about keeping the box?
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Good to hear! Yeah I also do water therapy every week and it definitely helps.
And lol I think keeping the boxes is more of a parent thing. I think it’s dumb and cheesy, but my Mom insists on keeping each box and posing pictures of me on Facebook after every injection. Whatever. I really don’t mind as long as she doesn’t tag me in them haha.
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Glad to hear it went well despite becoming a pin cushion Mike. As far as the box, I was never offered and I never asked. I know some get the empty vials and make charms or ornaments with them. To each their own, I’m not that sentimental I guess. Keep us posted on how it’s going!
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Hey DeAnn – Definitely agree that it’s a “to each their own” kind of thing. I just haven’t talked with others about it, so was a little surprised when they asked. I didn’t know if it was an often asked question. With the price, I can understand why. Didn’t mean for it to sound judgmental if it came across that way.
Next two loading doses have been scheduled for 5/16 and 5/30. 🙂
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Mike – I love how you said that you cried when they called to schedule your first injection. Some people say that men should never cry, but my reaction to the news that I was going to receive my injections were met with the same response. Congratulations on not only getting the approval to start your injections, but also congratulations on starting a new chapter in your life that will hopefully forever change the way you live each and every day of the rest of your life. Keep your head up and keep a smile on your face. You are in my prayers.
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Absolutely. I think an emotional reaction to this kind of news is perfectly natural. Thanks everyone for supporting each other.
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Thank you, Michael.
And Kevin, this is a great community here. Glad I stumbled upon it.
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Glad to have you here!
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Are you through your first few maintenance doses Mike? Have they gotten the method down to reduce the pin cushion effect? Hope all is well. Would love to hear how it’s going.
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Hey DeAnn – I am such a slacker. Apologies for not seeing this and not responding earlier. Last Wednesday, 6/27, was my fourth loading dose. I will have my first maintenance dose toward the end of October. And yes, they’ve gotten much better with their accuracy, requiring only one attempt for loading doses 2, 3 and 4. 🙂 As far as how it’s going, I’m going to post up a separate thread as I have a few observations and questions for others.
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Thanks for the update! Glad you have your loading doses done. Like I saw somewhere, you’re fully loaded! After the madness of the loading doses, it’ll seem like forever for that first maintenance dose. I’ll be getting my second maintenance dose in two weeks. Any side effects for you?
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Fully loaded, or as my wife would say, “full of something”. Funny, but true.
No side effects that I would view as serious. Fortunately, no headaches so far. Minor and mild constipation for maybe 2 – 3 days after the injection. Certainly manageable.
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