Explaining Lemtrada treatment after finishing my 11 year blinded trial last week. Today I'm talking about Lemtrada, What it is, how it works, the side effects and how effective the treatment is 🧡
Really informative, thank you. During the 11 years how were the MRI comparisons, did any new lesions appear? Was there any point where you reached, NEDA (No evidence of disease activity)?
Hi again Richard, you're welcome. Very good questions. I'm currently trying to get hold of a collection of my scans so that I can show you guys. But, the MRI comparisons that were shared with me in the first two years into the trial were really impressive. In 2009 when I was shown my first scan, (after diagnosis) I had lots of clusters of lesions in both my brain and spinal region, after my first treatment and my MRI scan you could see these lesions had reduced in size and with each MRI scan continuing to reduce in size. Some lesions are now barely visible. The last scan I was shown however was probably 8 years ago, so I would be really interested to see the most recent one and hope I can get hold of this and hopefully share it with you all. I'm not sure if there was an NEDA point that I reached because I went on to have a lot of new MS symptoms but never any 'new or active' lesions in my brain. However on doing some research, I do know that MRI scans can miss up to 40% of picking up imaging, and also it needs to be time related to the time you may be having a relapse. I'll go into more detail in another video on this.
@@Durace11Bunny Hi Richard, just thought I'd post a quick update. I wrote to my neurologist team to obtain copies of my MRI scans, I've had to sign forms and they need sign off from the doctor there but fingers crossed I should get the scans soon. I've requested scans from 2010 - 2020. It will be very exciting to see this and the changes in each one. Will keep you posted 👍
Yep it is pretty cool, and yes it'll be the first time I see them. I saw one in 2010 but it wasn't compared to anything. I'm wondering if I could contact the hospital in my home town in Oxford to get the very first scan, that picture is in my mind but would be great to physically have it to have the comparison from 2008 to now. Very excited to see these and so thank you for the thought as would not have done this otherwise 😊
I am from South Africa and our medical aids do not pay very easily for different treatment.from diagnosis i am on Rebiff injections and it work for me to have less relapses
Yes I understand that different countries do not have accessible treatments for people, I really wish that they did and do find that difficult. I'm so glad that the Rebiff injections have worked for you to lessen your relapses
Explaining Lemtrada treatment after finishing my 11 year blinded trial last week. Today I'm talking about Lemtrada, What it is, how it works, the side effects and how effective the treatment is 🧡
Really helpful insight
Really informative, thank you. During the 11 years how were the MRI comparisons, did any new lesions appear? Was there any point where you reached, NEDA (No evidence of disease activity)?
Hi again Richard, you're welcome. Very good questions. I'm currently trying to get hold of a collection of my scans so that I can show you guys. But, the MRI comparisons that were shared with me in the first two years into the trial were really impressive. In 2009 when I was shown my first scan, (after diagnosis) I had lots of clusters of lesions in both my brain and spinal region, after my first treatment and my MRI scan you could see these lesions had reduced in size and with each MRI scan continuing to reduce in size. Some lesions are now barely visible. The last scan I was shown however was probably 8 years ago, so I would be really interested to see the most recent one and hope I can get hold of this and hopefully share it with you all. I'm not sure if there was an NEDA point that I reached because I went on to have a lot of new MS symptoms but never any 'new or active' lesions in my brain. However on doing some research, I do know that MRI scans can miss up to 40% of picking up imaging, and also it needs to be time related to the time you may be having a relapse. I'll go into more detail in another video on this.
@@lauraironstalksms Thanks Laura, looking forward to more videos. Keep up the good work.
@@Durace11Bunny Hi Richard, just thought I'd post a quick update. I wrote to my neurologist team to obtain copies of my MRI scans, I've had to sign forms and they need sign off from the doctor there but fingers crossed I should get the scans soon. I've requested scans from 2010 - 2020. It will be very exciting to see this and the changes in each one. Will keep you posted 👍
@@lauraironstalksms thats awesome it'll certainly be intriguing to see the comparison, would this be the first time you'd be seeing these yourself?
Yep it is pretty cool, and yes it'll be the first time I see them. I saw one in 2010 but it wasn't compared to anything. I'm wondering if I could contact the hospital in my home town in Oxford to get the very first scan, that picture is in my mind but would be great to physically have it to have the comparison from 2008 to now. Very excited to see these and so thank you for the thought as would not have done this otherwise 😊
I am from South Africa and our medical aids do not pay very easily for different treatment.from diagnosis i am on Rebiff injections and it work for me to have less relapses
Yes I understand that different countries do not have accessible treatments for people, I really wish that they did and do find that difficult. I'm so glad that the Rebiff injections have worked for you to lessen your relapses
Really helpful insight
Glad it was helpful!