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)
Friday, December 9, 2011
Interesting things at ECTRIMS 2011
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| My photoshop of ECTRIMS. Got Red? |
I visited the Genzyme booth where they were showing their resourceful tool called the MS Atrium. It's an exciting tool that is very interactive & helpful to anyone who wants to know more about MS. One thing I have to share about viewing the MS Atrium, is that they asked me for MY opinion. Let me tell you, I was happy to give it to them.
I've never had a MS pharma company ask me for my opinion on something so this meant so much. It made me feel that our voice does matter when it comes to tools and resources and even the pharma drugs. A lot of the people that I saw in each booth at ECTRIMS didn't know I had MS... so they were speaking to me in a "teaching" persona... when I already knew a lot of what they were saying.
I can't stress the importance of being knowledgable about all things MS, especially if you are diagnosed with MS. It's up to us to change the course of Multiple Sclerosis in the long run. By making our voices heard... it can make a difference, even if it's a small one. I did want everyone to check out the MS Atrium though, www.msatrium.com/
Let me know what you think about it. It's like a virtual world of all things MS. Also, what was your favorite thing covered at ECTRIMS? I've been responding to comments that I've seen in the Conference Center... but i'de like to hear more feedback from everyone. I have still been getting contacted about ECTRIMS from different companies... and I want to provide as much feedback as possible. Remember, every voice counts.
Monday, December 5, 2011
Urinary Incontinence Tool (ECTRIMS 2011)
So, while I was at ECTRIMS in Amsterdam. I asked a question to Allergan, Inc. about their Urinary Incontinence Tool. I have received an answer to my question and I would like to share this information with everyone. The question we asked was...:
"Please tell us about the exciting new urinary incontinence screening tool that will be available to MS patients in the coming months."
The Answer we received from Manuel Signori, Sr. Director, Global Strategic Marketing, Urology.
"Many people with multiple sclerosis (MS) live for more than 4 years with bladder problems (incontinence) before having their first discussion with their physician about their condition. Often times, patients don¹t discuss their bladder issues with their doctor because they feel embarrassed or consider bladder issues something they just have to live with as a result of their MS.
The Actionable: MS Bladder Health Screening Tool was created by Allergan, Inc. to help the 60-80% of people living with MS who encounter bladder problems (incontinence). The Tool was developed to help patients understand when certain bladder symptoms warrant a discussion with their healthcare providers. It is the first MS expert approved, MS tool for urinary incontinence that takes both medical issues and quality of life (QOL) into account. It is not linked to any product or treatment.
It is our hope that The Actionable: MS Bladder Health Screening Tool will positively impact the patient/doctor conversation around bladder problems that put limits on social, professional and personal activities. These important conversations are the first steps in setting common expectations for the management and treatment of MS related bladder conditions."
Monday, October 24, 2011
I'm Home from ECTRIMS 2011!
Well... it's Monday and I'm back in Texas.... It's good to be home, but I wish it was cooler weather.
I had a BLAST at ECTRIMS!!! I hope everyone enjoyed the information that I recorded and sent back to be published.
It was a unique experience, being behind the scenes of what goes on with all the DR's. One thing I did bring up to some of them is that the patients want more information not just more drugs... some responses I received were, to bring you're updated medication list and an in depth description of what's been going on since your previous visit.
I do this by going to patientslikeme.com You can basically have all of you medical info on one place and then print out a "Doctors Visit Sheet" when it's time for your DR appt. This gives your DR all the information he or she needs to treat you properly.
Another thing I learned, there is no WRONG question. Never feel that you can't ask a question about medical concerns, even if they are embarassing ... all of us with MS do have embarassing symptoms to deal with.
I loved hearing what all the DR's had to say and all the information given by Dr. Kantor. While I was at ECTRIMS, I walked around booth to booth picking up all information that I could on everything MS...
So, once my brain is functioning properly, I will try my hardest to get this information out there to everyone.
I wanted to thank EMD Serrono and Novartis for their Educational Grant, that made the coverage from MSWorld at ECTRIMS possible.
Remember, each one of us living with MS is unique... and that's why MSWorld is a "fit" for us. There is no other organization that is all patients supporting one another.
Once my jet lag wears off, I will be doing my video blog to give a more in depth "overview", but I didn't think it would be the best thing to do right now, with my brain not fully working! haha
And don't forget to keep checking back to the ECTRIMS coverage, because there are some more videos that will be posted... I recorded so much, that we are trying to go through ALL of it, and get it ALL posted!
Take Care everyone!
xoxoxoxo
Ashley
I had a BLAST at ECTRIMS!!! I hope everyone enjoyed the information that I recorded and sent back to be published.
It was a unique experience, being behind the scenes of what goes on with all the DR's. One thing I did bring up to some of them is that the patients want more information not just more drugs... some responses I received were, to bring you're updated medication list and an in depth description of what's been going on since your previous visit.
I do this by going to patientslikeme.com You can basically have all of you medical info on one place and then print out a "Doctors Visit Sheet" when it's time for your DR appt. This gives your DR all the information he or she needs to treat you properly.
Another thing I learned, there is no WRONG question. Never feel that you can't ask a question about medical concerns, even if they are embarassing ... all of us with MS do have embarassing symptoms to deal with.
I loved hearing what all the DR's had to say and all the information given by Dr. Kantor. While I was at ECTRIMS, I walked around booth to booth picking up all information that I could on everything MS...
So, once my brain is functioning properly, I will try my hardest to get this information out there to everyone.
I wanted to thank EMD Serrono and Novartis for their Educational Grant, that made the coverage from MSWorld at ECTRIMS possible.
Remember, each one of us living with MS is unique... and that's why MSWorld is a "fit" for us. There is no other organization that is all patients supporting one another.
Once my jet lag wears off, I will be doing my video blog to give a more in depth "overview", but I didn't think it would be the best thing to do right now, with my brain not fully working! haha
And don't forget to keep checking back to the ECTRIMS coverage, because there are some more videos that will be posted... I recorded so much, that we are trying to go through ALL of it, and get it ALL posted!
Take Care everyone!
xoxoxoxo
Ashley
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