Hey Ross! I'm 30 and from the US. I have SMA Type II. Glad to hear how positive and open you are about your experience. I just hit a little over 3 months on Evrysdi (Risdiplam) now. I definitely feel what you say about energy and stamina, I'm having that experience as well, although some days it can be a bit up and down. I definitely feel as though my voice is more clear and louder sometimes as well. Other than that, it's hard to tell right now if I'm making any "gains", but I'm just happy with where things are at. I hope you keep us updated on your muscle tone/liver, I thought you bringing up the spike in your liver function to be really interesting if it is something to do with building muscle tone. Wishing you the best of luck!!
Hi, great to hear from you. I like hearing from other people with SMA. I am one month today. So you are two months ahead of me. I am just awaiting some confirmation about my bloods and when I have an update I will gladly do a pre-video explaining this as I think you are right it is worth sharing. Have you experienced any gains? Thanks for your support and subscribing. Hoping this drug has amazing progress for you to
@@thesmartchap No noticeable gains, besides stronger voice, more energy, and chewing easier/aspirating less. I think overall, I'm happy with these very simple gains but I'll be excited to see long term benefits in a year or two. Hope you're doing well, can't wait to see more from you!
Hi Ross, thank you so much for sharing your journey, I'm from the UK and have been on Risdiplam for around 3 weeks. I was wondering do you get your bloods done regular to monitor things? I've had no other support from my neurologist, just been sent the drug and that's it, but regular bloods sound like a good idea so wondering if it is something I should push for, cheers
Hi Amy. Thanks for your message. I’m just keen to help people on the same journey. Which hospital? Did you receive the blue book? Roche need a blood test to administer second prescription. Check with your neurologist. Also in six months you have to repeat the tests you took to get drugs. Although I’m wondering if you went to similar consultant my friend did who seemed to cut several corners.
@@thesmartchap Cheers Ross, I'm under Kings hospital in London. I was given no further info or details on bloods and 6 month follow ups so I shall query with my neurologist, thanks for flagging. On a different note while I'm here haha... was wondering have you had any sciatica like pain at all? I hit 30 and have had severe nerve pain in my legs now for 2 years (no previous issues at all so came as a shock) which I can't get to the bottom of, frustrating as I'm on strong pain killers which cause weakness so are masking any Risdiplam gains I may have. Anyway sorry for my life story but was wondering if you had experienced anything similar, thanks
@@amydunne1779 my friend goes there. They gave it to her with no assessment. It’s really poor. Roche need to know the baseline. 2 check ins with deterioration can lead to EAMS being cancelled. I’m so surprised they didn’t baseline anything.
@@thesmartchap thanks Ross, I had no idea about that, I have a call with my neurologist Monday so I shall definitely be querying this. I'll be following your progress on here, best of luck with everything
Hi Ross, I am 43 years old and from London in the UK. I've been taking Risdiplam for around 4 weeks now and was seeing some slight improvement but then I started getting digestive issues and was finding food was digesting very quickly and I was getting a little bit of diarrhoea. It was also making me feel weak. Have you had any similar issues and do you know if it is temporary or permanent?
Hi. We are similar age. Good to hear from you! I’ve had ongoing stomach issues for 2 years and two men similar age both type2 are experiencing the same. It could be a more fundamental SMA symptom. I’d speak to a professional. I’ve not had diarrhoea although one or two days in 45 days since starting I’ve gone very quickly. No weakness really except after exercise. On the whole I feel very good. Tired from doing more but greater energy. Only side effect for me is headaches
Glad to know that you have had no issues. I spoke to my neurologist and she said that quite a few people are having digestive/diarrhoea issues but she didn't know if this was temporary or permanent. I may start taking more protein as some people have said that helps. I need to do something because over the past year my SMA seems to have gotten slightly worse and Lockdown hasn't really helped and possibly made things worse. Let's hope that Risdiplam works for us all.@@thesmartchap 's
@@Laughing-Madman yes lockdown limited me. I’ve just started swimming again for first time since March 2020. The gravity neutral resistance is great for our weak muscles and the breathing in water is good for respiratory. Feel free to connect on Instagram. I’m not far out of London 🤙🏻
I went swimming a few years ago but found it difficult to breathe with the water pressure on my chest and the water in most swimming pools is too cold for me. I like very hot water. I will message you on Instagram.@@thesmartchap
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Hey Ross! I'm 30 and from the US. I have SMA Type II. Glad to hear how positive and open you are about your experience. I just hit a little over 3 months on Evrysdi (Risdiplam) now. I definitely feel what you say about energy and stamina, I'm having that experience as well, although some days it can be a bit up and down. I definitely feel as though my voice is more clear and louder sometimes as well. Other than that, it's hard to tell right now if I'm making any "gains", but I'm just happy with where things are at. I hope you keep us updated on your muscle tone/liver, I thought you bringing up the spike in your liver function to be really interesting if it is something to do with building muscle tone. Wishing you the best of luck!!
Hi, great to hear from you. I like hearing from other people with SMA. I am one month today. So you are two months ahead of me. I am just awaiting some confirmation about my bloods and when I have an update I will gladly do a pre-video explaining this as I think you are right it is worth sharing.
Have you experienced any gains?
Thanks for your support and subscribing.
Hoping this drug has amazing progress for you to
@@thesmartchap No noticeable gains, besides stronger voice, more energy, and chewing easier/aspirating less. I think overall, I'm happy with these very simple gains but I'll be excited to see long term benefits in a year or two. Hope you're doing well, can't wait to see more from you!
Love the accent, SMArt Chap! Thanks for talking about your carer situation. So under-discussed but vital!
Thanks. I’m planning on doing another update this week and some other videos.
Brilliant
Thanks 🙏🏻
Hi Ross, thank you so much for sharing your journey, I'm from the UK and have been on Risdiplam for around 3 weeks. I was wondering do you get your bloods done regular to monitor things? I've had no other support from my neurologist, just been sent the drug and that's it, but regular bloods sound like a good idea so wondering if it is something I should push for, cheers
Hi Amy. Thanks for your message. I’m just keen to help people on the same journey. Which hospital? Did you receive the blue book? Roche need a blood test to administer second prescription. Check with your neurologist. Also in six months you have to repeat the tests you took to get drugs. Although I’m wondering if you went to similar consultant my friend did who seemed to cut several corners.
@@thesmartchap Cheers Ross, I'm under Kings hospital in London. I was given no further info or details on bloods and 6 month follow ups so I shall query with my neurologist, thanks for flagging. On a different note while I'm here haha... was wondering have you had any sciatica like pain at all? I hit 30 and have had severe nerve pain in my legs now for 2 years (no previous issues at all so came as a shock) which I can't get to the bottom of, frustrating as I'm on strong pain killers which cause weakness so are masking any Risdiplam gains I may have. Anyway sorry for my life story but was wondering if you had experienced anything similar, thanks
@@amydunne1779 my friend goes there. They gave it to her with no assessment. It’s really poor. Roche need to know the baseline. 2 check ins with deterioration can lead to EAMS being cancelled. I’m so surprised they didn’t baseline anything.
@@amydunne1779 sorry I didn’t open the full comment. No sciatica pains. I just have bad stomach issues and lots of wind :-)
@@thesmartchap thanks Ross, I had no idea about that, I have a call with my neurologist Monday so I shall definitely be querying this. I'll be following your progress on here, best of luck with everything
Hi Ross, I am 43 years old and from London in the UK. I've been taking Risdiplam for around 4 weeks now and was seeing some slight improvement but then I started getting digestive issues and was finding food was digesting very quickly and I was getting a little bit of diarrhoea. It was also making me feel weak. Have you had any similar issues and do you know if it is temporary or permanent?
Hi. We are similar age. Good to hear from you! I’ve had ongoing stomach issues for 2 years and two men similar age both type2 are experiencing the same. It could be a more fundamental SMA symptom. I’d speak to a professional. I’ve not had diarrhoea although one or two days in 45 days since starting I’ve gone very quickly.
No weakness really except after exercise. On the whole I feel very good. Tired from doing more but greater energy. Only side effect for me is headaches
Glad to know that you have had no issues. I spoke to my neurologist and she said that quite a few people are having digestive/diarrhoea issues but she didn't know if this was temporary or permanent. I may start taking more protein as some people have said that helps. I need to do something because over the past year my SMA seems to have gotten slightly worse and Lockdown hasn't really helped and possibly made things worse.
Let's hope that Risdiplam works for us all.@@thesmartchap 's
@@Laughing-Madman yes lockdown limited me. I’ve just started swimming again for first time since March 2020. The gravity neutral resistance is great for our weak muscles and the breathing in water is good for respiratory.
Feel free to connect on Instagram. I’m not far out of London 🤙🏻
I went swimming a few years ago but found it difficult to breathe with the water pressure on my chest and the water in most swimming pools is too cold for me. I like very hot water.
I will message you on Instagram.@@thesmartchap
@@Laughing-Madman there is a good hydro pool in Stevenage.