I haven’t had a real sit down yet with the dr, so I am a little unclear about what I am supposed to be doing. Obviously I am supposed to start the medicine. Shared solutions already contacted me and thankfully, I will not have to pay for anything.
I think a nurse normally comes to me to teach me how to do the injection but due to Covid, I don’t think they are going to do that. They are telling me to watch the video on their site, which I have done.
I don’t want to do the first injection alone. It seems like a professional should be with me. I’m thinking my drs office is going to need to help with this. I pick up the medication on Tuesday. I am supposed to go to my MS drs on Wednesday to repeat one of my labs. Maybe they could help me then, if the injector has arrived.
Do I call and report any symptoms; new symptoms? What is the normal protocol?
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Tulip77
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Yes, usually shared solutions will send a nurse to show you how to do the injections. They will contact you to set up a time that works best for you. With these crazy times we live in, I can see them having you watch a video to see how to do it. I would contact your neuro's office to see if their rn would be able show you if/when you came into the office. That first injection for me was a little scary in thought but after I did it, I was okay doing it myself. I hope that you are able to get assistance with your first injection.
Hi Tulip77 , I remember being where you are now and feeling very alone. Like, as soon as you get a diagnosis they shove several boxes of syringes at you, so happy, like: “Problem solved!” And you’re standing there like, “Wait - I still have the exact same problems I had yesterday. All you did was give it a name!”
It’s like a rabid coyote is gnawing on your leg and the doctor says: “That’s ‘canis latrans’, and he is giving you a viral zoonotic disease called rabies.” And you’re like, “Um ya, agreed, why are you walking away!?”
(Interestingly, rabies causes progressive and fatal inflammation of the brain and spinal cord. And after all these years, there is STILL no cure... Sound familiar?)
So... Shared Solutions will be super-nice, and you’ll get some cool free stuff like ice packs and little locking boxes for your syringes. But even they are still only suggesting their shots might lessen your symptoms, not cure you... All I can say is, these will eventually become accepted facets of your reality.
You will do the first shot, then the next, then a hundred more, and you’ll barely remember ever being nervous. Just look forward to that day when you’re yawning and scratching your buns with one hand while you expertly self-inject with the other! (Bad-ass!) because that day WILL come.
Until then, rest assured there’s almost no way to do the injection so poorly that you’ll put yourself in any worse position than you’re already in! Ha ha! Sorry! But sometimes it helps to tell yourself “It can’t get any worse.” LOL
Good luck, and don’t put it off. Watch the video and then just do it. You’re going to be great!
Lol I like your sense of humor. It’s hard for me to laugh at myself... it just doesn’t come naturally so I have really enjoyed the light heartedness of this group. I need that big time!
You are describing my feelings exactly. I am going to do the medicine. No doubt about that. I think that is when reality will kick in. I’ll probably start crying. I am already a pretty emotional gal, but the last 6 months have been worse- maybe the ms is part of the cause.
It’s hard for it to feel “real” I think because I have not even stepped into the neurologist office yet. I’ve had 2 appts with her and both ended up being televisits. My scans and history were “undeniable” 😕
I’ll call tomorrow to try see if they can have me come in for my first shot and to schedule an appt with the PA for all my questions. They diagnosed me with RRMA, so I get the concept that there are periods of activity and then periods of remission and that the medicine is hopefully going to cause less relapses and like get remissions. I have been having ongoing issues since like December. Is this one long “relapse?”
Write all your questions down to ask your neurologist. I thought that was a great suggestion from bxrmom to call the office and explain that you could use some help with your first injection. A med tech or nurse should be able to guide you.
Dr. Aaron Boster has some excellent videos on YouTube that explain a lot of what goes on with MS.
Let us know how you do with your first injection. You're a smart cookie, so I know you'll do fine and will get the hang of it quickly.
For some reason, I couldn't get a nurse out to my house (I live in the country) so I just went to my PCP to show me how to inject. I later received and "AutoInject". For me those were great. You don't have to worry about doing it right or wrong. You just press down & push the button, wait till it's injected...done. I did that for about 12 years. You should also have a little chart that shows you where to inject. Your video will also go over that. Shared Solutions has a very good "help desk" with nurses on call if you should need one. I found right before bed was the best time to inject, but everyone is different and their schedules are different so find what time is best for you. It's not as scary as it seems. Good luck with it, it worked for me for years.
I had to do it myself, no nurse visit due to Covid in April, although by the 3rd injection they had someone come who simply watched me since I did the first 2 myself watching the video.
Ended up on Ocrevus anyways....was the med doc wanted to use but was concerned about Covid & availability to come in for infusions...I had the reaction on my 4th shot and even with switching to brand Copaxone. I had 103 fever, severe chills/shaking, feeling like crap the evening & next day. For me, the injection itself was the easy part. Good luck, write down everything to document if you have reactions.
Take it with you on Wednesday and ask for help as well ask asking them to define what the call in symptoms are v/s go directly to the emergency room. It can vary from practice to practice.
There’s no reason a nurse cannot come to your house to teach you injections, but they may be behind schedule. No one called me about it for a while so I did them myself. I was new to the outpatient life then and didn’t know I had to call everyone for everything.
Good luck. I never got used to it and was joyful with i had a reaction and they changed my med! But not everyone is such a sissy like me. I suppose if I'd been on it longer I probably would have gotten more used to it.
Tulip77 Hi! This is 2 days after your original post so this comment may be moot, but here goes: Are you injecting Avonex or Rebif? Those are the only 2 I’m familiar with as they are the only ones I’ve ever had. One goes into the muscle (OUCH!!) and the other in the fat. One is once a week the other is three times a week. With Avonex a nurse came to my house to demonstrate and with Rebif the nurse showed me in the office. Of course that was all in a time when the world wasn’t contaminated with CoVid. It really is simple but I understand your hesitance. I would definitely confirm with your doctor first to see if they intend for you to do it by learning from a video or if they’re going to show you in person. Even after I’ve been on Rebif for thirteen years, MS Lifelines still offers sending out a nurse for a “refresher” course if I need it. But again, things are a lot different these days. Please ask your doctor first (if you haven’t already done it) to clarify what they want you to do. Also, let us know how it goes. Good luck!
I did it. No fainting. All went fine. There was a burn that I was not really expecting. It lasted a good 45 minutes. It reminded me of when I had shingles. No other reaction other than some skin irritation. I am so glad that first injection is over! I’ve been stressing big time about it.
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