Hello everyone! Sorry it's taken me so long to get to writing this blog post, my MS got in the way of my "to-do" list.
So, I wanted to share some exciting things I learned while at ECTRIMS in Lyon, France.
For one, there is a study that has been done on Copaxone that looks VERY promising, from what I've heard. Instead of a daily sub-q injection of Copaxone at 20mg a day, they are looking into the outcome of taking Copaxone 3-times a week, still sub-q, but at 40mg a day! I know that this is something to look forward to for many, to follow up on it and see if the outcome is promising. Here is some more information on the study:
http://www.clinicaltrials.gov/ct2/show/NCT00202982
http://www.clinicaltrials.gov/ct2/show/NCT01067521
So, as you can see... right now the approved dosage is a daily inecjtion of 20mg, under the skin. The study looked at doubling the approved dose but changing the frequency of the dosing.
While this is exciting news, we still don't know ALL of the information in regards to this study.
Does the new dosing change and/or intensify the injection-site reactions? Is there a higher chance of getting lipoatrophy (dimples in the skin) from the injections? Will the injection procedure be the same? Will the auto-inject be used and/or modified if this dosing becomes available?
I'm going to keep researching on this information and I will share anything I find.
If you want to know more about ECTRIMS 2012 - you can view Webcasts and see Posters/Presentations:
Webcasts: http://ectrims2012.eventresult.com/
Posters & Presentations: http://www.posters2view.com/ectrims2012/welcome.php
Thursday, November 15, 2012
Monday, October 15, 2012
ECTRIMS 2012 Update
I'm finally sitting down and relaxing after ECTRIMS. I really hope everyone enjoys the coverage that we put together at this years Conference. I was very busy with meeting this year compared to last years conference. I will actually be putting together an article concerning a Biogen Press Conference I went to... very informative on all of their medications, with a focus on BG-12 of course. I will also share some of the medications that are in the clinical trial pipeline.
I've learned a lot at this years conference... A lot about Alemtuzumab, which is an IV medication that is in trial... So, how it works... is you get a 5-day infusion the first year, 3-day infusion the second year and then you MAY not need it after that... it's very complex. Dr. Kantor interviewed my neurologist, Dr. Edward Fox: https://conferencecenter.msworld.org/ectrims-2012/day-three/long-term-safety-of-alemtuzumab
We heard A LOT about BG-12 at ECTRIMS and also the recently FDA approved medication Aubagio (teriflunomide), which is an oral medication for relapsing forms of MS.
One of the things I found interesting was a study on something we don't hear much "studying" about... Copaxone. Right now, Copaxone is a 20mg sub-q (under the skin) injection, once-a-day. What is being studied that we heard about at ECTRIMS, is taking Copaxone 3-times a week at 40mg sub-q injections. I really can't wait to hear more about this study because I know Copaxone is a very popular medication among patients and I think that if it worked the same with the injection being less frequent, patients would be happier taking this medication. If this study proves to work, I wonder how the injection site rotation would work. Right now, you usually rotate everyday with your injection site area... Maybe the less frequent shots would reduce the risk of lipoatrophy (skin indentations).
Something I've heard a lot about MS Patients, is that we are some of the MOST educated patients out there. I've also heard a lot how if someone is going to be diagnosed with MS, this is a "good time" to be diagnosed due to all of the up and coming medications and the positive strides in MS Research.
It's so hard to cover EVERYTHING discussed at ECTRIMS because there is 100 things a day. I will try and give more information soon, I'm home now and my brain needs to get back to it's regular time-zone.
What was your favorite thing we covered at ECTRIMS this year?
One of the things I found interesting was a study on something we don't hear much "studying" about... Copaxone. Right now, Copaxone is a 20mg sub-q (under the skin) injection, once-a-day. What is being studied that we heard about at ECTRIMS, is taking Copaxone 3-times a week at 40mg sub-q injections. I really can't wait to hear more about this study because I know Copaxone is a very popular medication among patients and I think that if it worked the same with the injection being less frequent, patients would be happier taking this medication. If this study proves to work, I wonder how the injection site rotation would work. Right now, you usually rotate everyday with your injection site area... Maybe the less frequent shots would reduce the risk of lipoatrophy (skin indentations).
Something I've heard a lot about MS Patients, is that we are some of the MOST educated patients out there. I've also heard a lot how if someone is going to be diagnosed with MS, this is a "good time" to be diagnosed due to all of the up and coming medications and the positive strides in MS Research.
It's so hard to cover EVERYTHING discussed at ECTRIMS because there is 100 things a day. I will try and give more information soon, I'm home now and my brain needs to get back to it's regular time-zone.
What was your favorite thing we covered at ECTRIMS this year?
Thursday, October 11, 2012
Day One @ ECTRIMS 2012
On day one we heard an update concerning BG-12 for MS. I'm really excited to hear more and more about this medication because it's something I'm looking forward to as a treatment for my MS.
There is so much going on in the world of MS it's hard to keep up at times.
There are so many studies in the MS Pipeline, it's unbelievable! And from what I have seen in the exhibit center... A lot of companies and organizations are focusing on the Quality of Life for those living with MS.
So, what do you want to hear more about?? Are there things that you feel should be addressed in the world of MS that isn't being addressed now.
I know another big subject I've seen is patient adherence.... We all know it's a pain to take those medications... But are we taking those medications as directed??
Some other things to look forward to are the studies of medications for those with progressive forms of MS!
As you've seen or heard in the past from previous conferences we have covered, Avonex now has not only the Avonex pen which I had a vision last year at ECTRIMS in Amsterdam, but also the titration kit... This titration kit into help ease you onto the medication and studies have shown a reduction in flu-like symptoms for those starting Avonex on the titration kit.
During this meeting there will be a discussion in a phase 3 trial on copaxone taken 3 times a week compared to placebo.
Another thing I hope we hear more about is Alemtuzumab aka Campath as a treatment for MS.
I also hope to learn more about what is being researched as far as symptom management.
Keep sending in your questions to QandA@msworld.org, I'm writing them all down and will try my hardest to get them answered.
I will give another update soon, it's time to continue with Day Two coverage.
There is so much going on in the world of MS it's hard to keep up at times.
There are so many studies in the MS Pipeline, it's unbelievable! And from what I have seen in the exhibit center... A lot of companies and organizations are focusing on the Quality of Life for those living with MS.
So, what do you want to hear more about?? Are there things that you feel should be addressed in the world of MS that isn't being addressed now.
I know another big subject I've seen is patient adherence.... We all know it's a pain to take those medications... But are we taking those medications as directed??
Some other things to look forward to are the studies of medications for those with progressive forms of MS!
As you've seen or heard in the past from previous conferences we have covered, Avonex now has not only the Avonex pen which I had a vision last year at ECTRIMS in Amsterdam, but also the titration kit... This titration kit into help ease you onto the medication and studies have shown a reduction in flu-like symptoms for those starting Avonex on the titration kit.
During this meeting there will be a discussion in a phase 3 trial on copaxone taken 3 times a week compared to placebo.
Another thing I hope we hear more about is Alemtuzumab aka Campath as a treatment for MS.
I also hope to learn more about what is being researched as far as symptom management.
Keep sending in your questions to QandA@msworld.org, I'm writing them all down and will try my hardest to get them answered.
I will give another update soon, it's time to continue with Day Two coverage.
Monday, October 1, 2012
Preparing for ECTRIMS 2012
Well, in one week I will be on my way to Lyon, France for the 2012 ECTRIMS Annual Meeting.
I can't tell you how excited I am to be there and learn more information!
ECTRIMS 2011 was my first conference to attend for MSWorld and I still can't believe it's been a year since then. I truly hope that everyone enjoys the news coverage from all of the MS Conferences.
Well, this year I started asking viewers to submit their questions they would like me to try and have answered at the conferences. I can't promise to get ALL of the questions answered, but I do try my hardest to get a lot of the questions answered.
I still have a list of questions to try and have answered my some of the neurologists at ECTRIMS, please don't be shy in sending in your questions to QandA@msworld.org
I don't give out any names, so your questions are completely confidential!
Anyways... James, my husband, and I will be leaving for ECTRIMS on October 7th... we will arrive in France on October 8th in the evening. I'm loading up my iPad with reading material for the trip! I'm getting there a few days early, so that my body (my MS) can adjust to the weather change. For those of you who don't know, I'm from the Austin, TX area... so everywhere is colder than where I live... lol
Since we started this MS Conference Coverage, I can't tell you how many comments I've gotten about the information we provide in that section of our website. Even neurologists are watching our coverage... During these conferences there are different "meetings" going on at the same time, so I was so grateful to hear that neurologists were coming to MSWorld to check on the things they might have missed.
I know that BG-12 is on a lot of MS patients minds, so trust me... that's a topic high on my priority list as well that I want to hear more about. There are so many new things to discuss in the World of MS... so I hope I can cover it all. Good thing my husband doesn't have MS and he can keep up.
I can tell you that one of my favorite things to do at these conferences, is go into the "Exhibit" area... this is where all of the MS companies have "booths" full of information and resources. I have bags upon bags of this information in my "office area". So, I hope to get even MORE information and break it down to you in my video blogs.
Sometimes I get busy... or tired from the meetings, so if you don't hear from me during the meeting everyday, you know why. I do, however, try and give updates once I'm home if I cannot blog while I'm there.
Make sure to stay tuned to MSWorld's Conference Center: https://conferencecenter.msworld.org/ectrims-2012
I'm sure the other volunteers at MSWorld will help let everyone know when new content is posted.
We've also made a Message Board Thread so everyone can discuss all things ECTRIMS, http://msworld.org/forum/showthread.php?t=123175
That's all I have for now, but I will try my hardest to keep in touch!
Thanks,
Ashley Ringstaff (RingpOP/Ringer1319)
I can't tell you how excited I am to be there and learn more information!
ECTRIMS 2011 was my first conference to attend for MSWorld and I still can't believe it's been a year since then. I truly hope that everyone enjoys the news coverage from all of the MS Conferences.
Well, this year I started asking viewers to submit their questions they would like me to try and have answered at the conferences. I can't promise to get ALL of the questions answered, but I do try my hardest to get a lot of the questions answered.
I still have a list of questions to try and have answered my some of the neurologists at ECTRIMS, please don't be shy in sending in your questions to QandA@msworld.org
I don't give out any names, so your questions are completely confidential!
Anyways... James, my husband, and I will be leaving for ECTRIMS on October 7th... we will arrive in France on October 8th in the evening. I'm loading up my iPad with reading material for the trip! I'm getting there a few days early, so that my body (my MS) can adjust to the weather change. For those of you who don't know, I'm from the Austin, TX area... so everywhere is colder than where I live... lol
Since we started this MS Conference Coverage, I can't tell you how many comments I've gotten about the information we provide in that section of our website. Even neurologists are watching our coverage... During these conferences there are different "meetings" going on at the same time, so I was so grateful to hear that neurologists were coming to MSWorld to check on the things they might have missed.
I know that BG-12 is on a lot of MS patients minds, so trust me... that's a topic high on my priority list as well that I want to hear more about. There are so many new things to discuss in the World of MS... so I hope I can cover it all. Good thing my husband doesn't have MS and he can keep up.
I can tell you that one of my favorite things to do at these conferences, is go into the "Exhibit" area... this is where all of the MS companies have "booths" full of information and resources. I have bags upon bags of this information in my "office area". So, I hope to get even MORE information and break it down to you in my video blogs.
Sometimes I get busy... or tired from the meetings, so if you don't hear from me during the meeting everyday, you know why. I do, however, try and give updates once I'm home if I cannot blog while I'm there.
Make sure to stay tuned to MSWorld's Conference Center: https://conferencecenter.msworld.org/ectrims-2012
I'm sure the other volunteers at MSWorld will help let everyone know when new content is posted.
We've also made a Message Board Thread so everyone can discuss all things ECTRIMS, http://msworld.org/forum/showthread.php?t=123175
That's all I have for now, but I will try my hardest to keep in touch!
Thanks,
Ashley Ringstaff (RingpOP/Ringer1319)
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