[tammy]

Just to give you a different experience and positive vibes… I have been on the medication for almost 2 years now and I have had no GI issues and no diarrhea. So I hope that helps to ease your mind a bit 🙂

[tammy]

1 more time

[tammy]

Testing again

[tammy]

Testing 123 🤣

[tammy]

I had no idea that it even posted LOL. It told me her again. We’ll see what happens with this one. So what does the spinal tap do? You have to get that before getting spinraza? Sorry for the ignorance LOL

[tammy]

This may sound dumb but was wondering what you get spinal taps for? I’ve never had one so forgive my ignorance LOL

[tammy]

I agree I definitely think you should give yourself a break because you didn’t say anything wrong. You were simply defending yourself. And it’s true none of these people have any idea what it’s like to sit and wait and feel like our bladders or bowels are about to burst and there’s no one around to help until the next shift starts. Just because these people take care of us doesn’t mean they are in any position to judge. They have no idea what we go through and no idea what it feels like. Not even a little bit. I would like to see how they felt if they had to constantly suffer and wait for things like we do. They have the capability of going off and making a living and getting a good job and we don’t because our insurance will get taken away. Actually had a similar situation happen from a rude customer service rep at Medicare at the 1-800 hotline. I was trying to get a prescription issue figured out and they were telling me to go to a different Pharmacy and I didn’t want to pay $11 per box for Albuterol nebulizer bullets. And the Medicare rep made some snarky remark like… well I think $11 is pretty reasonable and I pay for all of my prescriptions out of pocket. And at the time I had been waiting on hold for so long but I just wanted to get the situation handled and get off the phone. But in hindsight I wish I had complained about her or at least snapped back at her, because I felt like saying you know what, you also don’t have to pay for a modified van and repairs out of pocket like I do so don’t compare yourself to me

[tammy]

I love dogs! I love all animals really! So cute I’m glad you got one. It definitely has swayed my mind on getting one because I don’t have enough help at my apartment and I am at my mom’s house 50% of the time. But I do have a dog at my mom’s house which is both of ours. If it were up to me though and if I had more help, and I knew it wouldn’t be getting left alone at times, I would definitely get another one to have with me in my apartment full-time.

[tammy]

Thanks! Hopefully somebody has done this

[tammy]

Sorry! Feel free to delete my above reply. I meant to post it as a new topic so that more people would see it. But I accidentally posted it as a reply. So I posted it again as a separate topic

[tammy]

Can anyone here give me advice or tell me how the process goes if you are on 1 medication and looking into trying a different one? I’m currently on Evrysdi and have noticed no difference in the way I felt before taking it. Definitely no gains either. I’m in the process of slowly getting the ball rolling to try spinraza. The only annoying part is that my current neurologist does not administer this medication so I would have to go to an entirely different neurologist and it’s not in the most convenient location. Or should I say… it’s in a very expensive location because I would have to pay $11 for the George Washington Bridge fee and another $20 to $30 for parking just for the appointments. But anyway that’s not even my concern at the moment. I was wondering how it works with insurance to switch between the two. Is it a hassle? Has anyone here gone from Evrysdi to spinraza? And if you didn’t like one versus the other have you gone from one to the other, and then back to the initial one again? I’m just trying to figure out how difficult it’s going to be and I also don’t want to take the risk of having long gaps in between treatment and have no medication to take whatsoever. Have no idea how this works I’m a total newbie at this stuff LOL any advice would be greatly appreciated

[tammy]

I’m most excited about moving closer to the release of apitegromab

[tammy]

I am on the pill but not to make it stop. I get my period regularly every month which is unbelievably inconvenient as you all know. Was literally just discussing how much of a pain it is this morning lol. Constantly leaking due to pca’s pulling me by the pants to adjust the position of my hips, which then makes the pad go crooked and then I leak. I got some reusable chuck pads from Amazon that just about fit to the size of my seat cushion so I put those on top of the seat to protect my seat cover from getting all gross and nasty. I went on the pill when I was 18 because my periods were too heavy without it and also would not arrive on a regular schedule, which would ruin clothing if I didn’t know it was on its way. Have thought of Depo also but haven’t done it

[tammy]

I can definitely sympathize with the “annoying voice” thoughts lol. I always say that about my voice on recordings. Like OMG is that really what I sound like in person? Because my voice doesn’t sound like that in my own head/ears lol. Like Deann I also have a very strong voice and loud voice. Considering I have to yell at my job all day long because it’s loud there lol. I definitely sound like an adult, however I feel like when I listen to myself on videos and what not, my voice sounds a bit nasally and annoying. Like Janice from Friends ????

[tammy]

I’ve considered trying spinraza since I’ve never tried it before. Don’t know how that hurdle would be with insurance since it’s more expensive than Evrysdi. I also struggle with the annoyance of having to go to the hospital every so often to have the procedure done. What if I can’t make an appointment? What if someone who is supposed to drive me cancels? That type of thing. As far as Evrysdi, I have noticed absolutely no improvements or even small gains. Which is disappointing. Which is why I’ve considered trying to see if I experience any gains with Spinraza. As far as keeping us out of the hospital, I was really never one to have much issues when sick, therefore not needing to really ever go to the hospital. Except for when I was in grade school and high school and used to have stomach bleeding issues completely unrelated to sma. And the one time back in 2010 when I had the flu and couldn’t stop vomiting so decided to go and get hydrated for a few days. But have not been in a hospital since. I just wish I was one of those lucky people who got to experience some sort of improvement no matter how little

[tammy]

Oops that was supposed to say I also struggle with the IDEA of the annoyance of having to go to the hospital to have it done. (it doesn’t let me edit my posts anymore)

[tammy]

I guess I’d say more like lunch or brunch LOL because I don’t eat breakfast. But it doesn’t matter what time you take it as long as you take it close to the same time every day. When they say after a meal, I don’t think it matters on the size of the meal. It’s not really that strict of a regimen. As long as you eat before you take it, you’re good

[tammy]

No problem! And yes, every person is definitely different. What I did when starting the medication just as a precaution in case.. I ate a bowl of plain unsweetened oatmeal right before taking it to kind of coat the stomach. And I did that for several months. Maybe it helped? Who knows but can’t hurt to try. Also I have not noticed any difference since taking the medication unfortunately, no improvements, but I guess it’s better to be on it than not be on it

[tammy]

Thanks! I will definitely keep that in mind. As I’m sure as you said, there will have to be a certain time frame where I stop one before starting the other

[tammy]

Thank you for trying to help and for all the info! I did call the number on the spinraza website and spoke to someone but from what they told me, it seems like I can’t be connected with a family access member until the doctor writes the script for the medication. Which is disappointing and not very helpful. When I started looking into Evrysdi, I was able to speak with a case manager right away, even before the doctor wrote the script and she explained the whole process to me and what I would need and all kinds of helpful information. I was able to get all my ducks in a row before even seeing the doctor. Which he thanked me for and said was very helpful lol. Was hoping I would get the same kind of info from the spinraza team as well. But unfortunately not really. Just very basic information from a customer service representative. Still waiting to hear back from the new neuro as well to see if she will accept me as a new patient. Hopefully I will have some answers soon

[tammy]

HAHAHAHAHAHA ????????????

[tammy]

If you do, keep us posted

[tammy]

I may have seen that but I will take a look again in case I’m wrong.

[tammy]

I honestly didn’t think there was anything like that by me either because I’ve never heard of it, but was pleasantly surprised when I did the research.