amy-olmscheid
Forum Replies Created
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Such a good question, DeAnn. I try really hard to focus on what I am able to do vs what I can’t/what I am missing. That said, there are times when those feeling of missing out come in. Lately it has been around travel. My sister and niece on currently on a 10 day trip to Italy, France and Spain. Looking at their photos every day, I have a little hint of envy. Good friends of mine recently spent a few weeks in Hawaii. Other friends are leaving soon for Greece. I am so happy for them to have the opportunity but a part of me wishes I could easily hop on a plane and trek across Europe.
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Welcome, Robin! Glad to meet you~
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I have been getting Evrysdi shipments for over a year and haven’t had it happen but will be on the lookout for it. Thanks for the post!
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I’m from Minneapolis/St. Paul, Minnesota USA. Lived here most of my life!
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I started Evrysdi in January; similar to Jeremy, my first attempt at treatment. Haven’t noticed any significant gains or improvements. Not sure what things would be like without it…if declines would have spend up. It’s tough to know if it making any difference.
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Thanks for sharing, Alyssa. Yes, have had times when what my body needed/what was best for my health didn’t match up with what I wanted to do for work Before COVID, I had to start working from home several days a week and had a lot of mixed emotions about not being in the office/with my team etc. Hope that you get to a spot of peace with your decision eventually.
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Hi Davida,
I haven’t had a cold or sinus infection (my usual winter ailment) in 2020 or 2021, and I have been on Evrysdi since January 2021. I was pretty vigilant with masking and no going out to many public events during COVID and am still pretty careful even though I have had the vaccine.
Good luck starting the medication. I was nervous but overall it went pretty smoothly for me.
Amy
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Thank you for posting!
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Hi Ajay,
I am 48 years old; type 3. About 2 weeks into starting Evrysdi (in January), I started having GI issues (loose stool/diarrhea). I adjusted my diet a bit (added in bananas and other foods to help bulk things up a bit) and definitely made sure I didn’t take it on an empty stomach, although I found it better for my stomach if I didn’t take it immediately after eating. I usually wait an hour or so after eating to take it. Things started calming down and my body adjusted to it after 3 weeks or so. Still have a little flare every once in a while but not often anymore.
Hope things improve for you soon! Good luck!
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Hi Briana,
There were a few nights when I remember having a bit of that in my legs but it passed fairly quickly. I am similar to Kip in that my side effects were mostly GI-related, It has been over 3 months and it has gotten somewhat better and I’ve tried to manage it with diet. Hope you start adjusting!
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Exciting news, Brianna! Thanks for sharing.
In response to your question, I have been on Evrysdi since January. Had some minor GI issues that I navigated mostly with shifting my diet a bit but overall it wasn’t too bad. I always take it after having eaten and haven’t had any nausea. I haven’t noticed any huge shifts in function, but I keep reminding myself that this is the long game. If I can arrest the decline/degeneration, than that is success with this treatment.
A few tactical things I wasn’t totally prepared for. The box it comes in is big and sort of heavy…there is a cooler and tons of cool packs in there. I understand why as it needs to be kept at a certain temp, but I wasn’t totally prepared for it all 🙂 Also, it took me a bit to get used to the dosing process down. It is my first time using a liquid medicine and having to tilt the bottle upside down to draw it and then right side up, removing the syringe and making sure it was still at the correct dosage took me a while to get the hang of. Just a few things to share with those that may be assisting you in the process 🙂
Good luck!
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Congrats on keeping the first appointment! I encourage you to stick with it for awhile. Talking about hard stuff sometimes leads to a post-appointment “emotional hangover” but that is normal and part of the process. The emotions that talking about hard stuff brings up need to get out. Ignoring them or keeping them stuffed down don’t make them go away…they just end of festering inside ourselves and will eventually find their way out somehow.
Thanks for posting about this. You never know else reads your posts and decides to maybe consider talking with someone at some point.
Take care!
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Hi Alyssa,
Thanks for sharing, Alyssa. Therapy can be a helpful tool in navigating life. I started seeing a therapist for something I thought was completely unrelated to my SMA diagnosis (the ending of a 10+ year relationship/calling off an engagement) but we ended up talking quite a bit about how me having SMA has impacted many facets of my life (relationships, work, friendships).
Everyone’s experience with therapy is unique and very personal. The only insights/advice I have is that it isn’t a magic “fix” overnight, and that sometimes after a therapy appointment we feel worse…digging up all of those thoughts and emotions can be draining and tough. However, that is part of the process. Give it some time. Also, the more honest and real you can be with your therapist, the better. Holding something back out of embarrassment isn’t helpful in the long run. That said, it takes awhile to build up trust with someone so try to stick with it for awhile.
Looking back, I am so thankful for my experiences in therapy. It really did help me out of a dark place and gave me new tools for approaching many aspects of my life.
Best to you~
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I, too, was nervous before the first dose. I agree with Mark’s comment…it’s like drinking strawberry (very artificial strawberry!) water. I drink a few sips of water after and then rinse my mouth out with some water to get rid of any leftover taste. It’s been 3 weeks for me and I am still getting used to getting the dosage correct in the syringe while flipping the bottle upside down and then right side up to pull out the syringe but it is getting easier. Minimal side effects – a few GI issues but all very tolerable/manageable for me. I always make sure to have eaten prior so that I am not taking it on an empty stomach. I haven’t noticed any changes to my functioning per se but it is early. I am 48, female, Type 3. Good luck!
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Hello!  I have been taking Evrysdi for two weeks. I have had some mild GI issues but adjusted my diet for a bit and things have been getting back to normal. I haven’t noticed any other side effects. It think it is too soon to notice any particular outcomes, although I may have a bit more energy.