My hope is to help take Alzheimer's Disease out of the shadows, to affirm life can be joyous and free no matter what, and to share strength, hope and yes -- LAUGHTER -- with anyone affected by Alzheimer's Disease.
Megan, thank you for sharing you story. Thank you for your blog. Very inspiring. Very happy to hear that it is working for you. Last year, I had to prepare a final project for a degree I was about to complete. I chose LMTX because of the story behind it. The incredibly brave story of Dr. Wischick. It was so inspiring to learn of his endless battles to fight for what he thought was the right path. Here's a link you propably already know, but just in case... http://www.wsj.com/articles/SB10000872396390443624204578060941988428604 I finished my project many months back, but I still keep track of everyting that is going on in AD and with this beautiful molecule. I hope one day, I can also be of a little help in battling AD shadows.
Thank you very much for your enthusiasm and for being as brave as you are.
Hi Megan, Dropping by to see how you are going and if you have any more information regarding taurx and its progress. A few more places in Australia are beginning to participate in the trials. Their data is a long way behind the part of the study that you are in. We all sit patiently waiting and watching.
Thanks so much, MG. The latest I heard is it could be on the market in 2017, pending outcome of clinical trial and fast-track US FDA approval. I'm not sure what the requirements are for other countries. The TauRx website keeps up to date with press releases http://taurx.com/press-releases-announcements.html
Hi Megan, Doesn't LMTM cause frequent and urgent urination? I've read that Methylene Blue (LMTM is derived from MB) causes this, because it irritates the bladder. Yesho.
Hi Megan, It has been a while i visited your blog. So happy that you are doing so well and i hope your quality of life has improved a lot since then. Since you are on open label,do you still have to go those medical checkup every few months just like the trial? Does taurx still monitoring yr progress i mean. God bless you and family
Thanks cw...Every 3 months I get a blood test and my study partner and I answer very general "progress" questions. I no longer get MRI or special PET scan or extensive cognitive tests. It would appear at this point that just general progress is measured.
Hi Megan, Not wanting to bombard you with questions - they seem to be coming from all directions at the moment, but yes - I do have one. I recall you saying in one of your blogs that you were having trouble with numbers. Has or does LMTX appear to halt alzheimers in it tracks or does it enable you to return over time to where you were? I suppose what I am getting at is are people who take this drug still able to learn and relearn? Has this happened with you? Apologies if this is too personal question and you wish not to answer.
Hello MG, Happy to answer any questions. It appears LMTX halts the progression. I still have great trouble with numbers, multi-tasking is not an option, step-by-step processes must be written out, and short term memory requires a written reminder or list. None of these things have gotten worse -- none have gotten better, though I do believe my coping skills with these limitaions have been honed with practice. The relief that this seems to be working at halting the progression has certainly relieved the emotional/psychological strain of the diagnosis!
Thank you for your reply Megan. I have made previous comments on your blog and like so many others we sit waiting. My family has a strong early onset gene and the occurrence of this disease in our family if huge. My mother was 50 when she was diagnosed and passed away at age 54. I am almost 46. Research indicates that females (in EOAD families) tend to develop (show signs of) the disease 5 +/- 1 year earlier than the maternal parent, placing me right in the middle of this period. I worry about time passing - what I could potentially lose before LMTX hits the market place - a scary prospect. I realise that timing is crucial. I have been enrolled in the DAIN tu solanezumab trial for almost 12 months taking regular infusions. While I have had a genetic test done, I am blind to that information as well as whether or not I am on a placebo or the real thing. I have no idea what my brain scans show (3 monthly), and feel somewhat confident with the cognitive testing, although they will be able to ascertain minute differences! There is so much controversy still regarding solanezumab - does it work, does it not and yet in the media (here in Aus) we hear minimal about TauRx and LMTX. Waiting for real results to come out from LIly regarding the DIAN study (which is taking only EOAD participants), and final results from LMTX studies in 2016. So glad to hear that you are doing well emotionally and psychologically. I can only imagine what you have experienced. You are one strong lady and I thankyou for sharing.
Mg, I am so sorry to hear of the great challenges you face with EOAD. When I was diagnosed, my neurologist put me on Aricept (generic is Donepezil) and then about 6 month later added Namenda. There is some evidence that giving these later stage drugs early on in the disease may slow the progression. I have remained on those drugs as well throughout the clinical trials. All the best!
Megan, great to hear things are under control. If you remained on Aricept and Namenda throughout the trial, how do we know if LMTX is effective? Could the "effectiveness" of LMTX due to other factors? Thank you for sharing...very glad to hear you are doing well.
Between 2010 (when I started Aricept and Namenda) and 2013 when I began the LMTX Phase 3, there was mild-moderate decline in my cognitive test scores with my neurologist. Since LMTX, no decline.
Hi megan, just want to check with you. There are 2 Lmtx AD phase 3 trial. 15 months and 18 months period. Which one did you enrol?understood that you completed the trial in jan. Thanks for sharing.
Hello cw. I looked this up in my study consent forms to verify. The name of the study was: "Randomized, Double-Blind, Placebo-Controlled, Parallel-Group, 18-Month Safety and Efficacy Study of Leuco-methylthioninium bis(hydromethanesulfonate) in Subjects with Mild Alzheimer’s Disease" Protocol #:TRx-237-005
Thanks for sharing. Do you have a AD support group and did you share with them this amazing journey that you are going through now? Hope they are encourage by your progress. Do share with us if there are similar cases like you that go through this trial. Hope this drug will be out by next year and help more people to battle this devastating disease.
Thanks cw..sorry fro the delay in responding. The only support groups locally (I limit my driving) were really for respite care. The support groups for beginning stage AD or Mild Cognitive Impairment were outside my driving safety zone. Yes...hoping this gets fast-tracked through FDA and other country's processes!
How are things? Are you still on the lmtx and progressive 3 months monitoring. Lastly on this last day of 2015 i wish you and family a fruitful and prosperous 2016! Stay healthy..
My name is Chris. I have kind of been lurking on your blog here for a few months now. I just wanted to say hi and wish you a happy new year and wish you to be happy and healthy. My dad has Lewy Body Dementia. I hope LMTX will be able to help people with that as well. Thank you very kindly for sharing your life with us readers. Take care and looking forward to more of your blog posts.
While LMTX appears to be an effective medication I also look forward to more, possible treatments, therapies...combination therapies as well. I think that could be in the direction Alzheimer`s/Dementia and other diseases as such are being headed. Much like H.I.V. is now being treated. The main thing is to try to find out as much as we can about these neuro diseases. I am looking forward to find out what is going to be learned from the companies TauRx, Eli Lilly, Anavex, Biogen, Neuronix... etc. As well as other possible treatments like Deep Brain Stimulation and Transcranial Magnetic Stimulation...etc.
I also hope if Hillary Clinton does get elected president I hope she delivers on her Alzheimer`s plan to fund $2 billion dollars annually for 10 years. Funding has to be in the billions, not the millions. Sounds like with her plan,we may finally get the amount of funding needed to finally end Alzheimer`s.
I Chris -- thank you for your kind words and all the best to your Dad. Yes, there are some other therapies in process, and YES I hope our next President pushes for much more $$. I would think conservatives would get on board with that, as the cost to the US economy if no treatment is found will be staggering.
How are you? Taurx phase 3 result is out for mild to moderate trial. It shows no statistical signifcance for subgroup that are on addon therapy meaning taking existing drugs on top of lmtx. However study shown that subgroup that took only lmtx alone shows 85% stop progression which is highly statistical signifcance. My advise to you is do not take combination of drugs which might reduce the benefit of lmtx on you. Well, if taurx cannot get aoproval for FDA based on monotherapy, i am afraid that lmtx might not be available anymore and those who benefit from it so far will be disappointing. Pray hard
Thanks, cw. I am discouraged, even though this report was for the 015 protocol (mild to moderate AD), and my group (005 just mild AD) results will be out in October. Nevertheless, with this failure, I doubt the FDA will approve even if my group results are better. I do know that so far it appears to be working for me, and I believe I will be on the open label for as long as the drug is in trial for frontotemporal dementia.
You sure picked the right AD trial to go on Megan! Good for you!
ReplyDeleteMegan, thank you for sharing you story. Thank you for your blog. Very inspiring.
ReplyDeleteVery happy to hear that it is working for you.
Last year, I had to prepare a final project for a degree I was about to complete. I chose LMTX because of the story behind it. The incredibly brave story of Dr. Wischick. It was so inspiring to learn of his endless battles to fight for what he thought was the right path. Here's a link you propably already know, but just in case... http://www.wsj.com/articles/SB10000872396390443624204578060941988428604
I finished my project many months back, but I still keep track of everyting that is going on in AD and with this beautiful molecule. I hope one day, I can also be of a little help in battling AD shadows.
Thank you very much for your enthusiasm and for being as brave as you are.
My best wishes for you and a big hug,
Miss Z
Thank you for your kind comments and great article. Yes, very grateful to Dr. Wischik!
DeleteHi Megan,
ReplyDeleteDropping by to see how you are going and if you have any more information regarding taurx and its progress. A few more places in Australia are beginning to participate in the trials. Their data is a long way behind the part of the study that you are in. We all sit patiently waiting and watching.
Best wishes to you.
Thanks so much, MG. The latest I heard is it could be on the market in 2017, pending outcome of clinical trial and fast-track US FDA approval. I'm not sure what the requirements are for other countries. The TauRx website keeps up to date with press releases http://taurx.com/press-releases-announcements.html
DeleteHi Megan,
ReplyDeleteDoesn't LMTM cause frequent and urgent urination? I've read that Methylene Blue (LMTM is derived from MB) causes this, because it irritates the bladder.
Yesho.
I believe after the Phase 2 trials, it was reformulated. I have not experienced this side effect.
DeleteHi Megan,
ReplyDeleteWonder if you feel any changes now that you have move into the open label trail.
K
No changes on open label...still seems to be holding the line! Yes!!! Latest I've heard is LMTM my be on its way to the market in late 2016!
ReplyDeleteHi Megan,
ReplyDeleteIt has been a while i visited your blog. So happy that you are doing so well and i hope your quality of life has improved a lot since then. Since you are on open label,do you still have to go those medical checkup every few months just like the trial? Does taurx still monitoring yr progress i mean. God bless you and family
Thanks cw...Every 3 months I get a blood test and my study partner and I answer very general "progress" questions. I no longer get MRI or special PET scan or extensive cognitive tests. It would appear at this point that just general progress is measured.
DeleteHi Megan,
ReplyDeleteNot wanting to bombard you with questions - they seem to be coming from all directions at the moment, but yes - I do have one. I recall you saying in one of your blogs that you were having trouble with numbers. Has or does LMTX appear to halt alzheimers in it tracks or does it enable you to return over time to where you were? I suppose what I am getting at is are people who take this drug still able to learn and relearn? Has this happened with you? Apologies if this is too personal question and you wish not to answer.
Regards MG
Hello MG,
ReplyDeleteHappy to answer any questions. It appears LMTX halts the progression. I still have great trouble with numbers, multi-tasking is not an option, step-by-step processes must be written out, and short term memory requires a written reminder or list. None of these things have gotten worse -- none have gotten better, though I do believe my coping skills with these limitaions have been honed with practice. The relief that this seems to be working at halting the progression has certainly relieved the emotional/psychological strain of the diagnosis!
Thank you for your reply Megan. I have made previous comments on your blog and like so many others we sit waiting. My family has a strong early onset gene and the occurrence of this disease in our family if huge. My mother was 50 when she was diagnosed and passed away at age 54. I am almost 46. Research indicates that females (in EOAD families) tend to develop (show signs of) the disease 5 +/- 1 year earlier than the maternal parent, placing me right in the middle of this period. I worry about time passing - what I could potentially lose before LMTX hits the market place - a scary prospect. I realise that timing is crucial.
ReplyDeleteI have been enrolled in the DAIN tu solanezumab trial for almost 12 months taking regular infusions. While I have had a genetic test done, I am blind to that information as well as whether or not I am on a placebo or the real thing. I have no idea what my brain scans show (3 monthly), and feel somewhat confident with the cognitive testing, although they will be able to ascertain minute differences! There is so much controversy still regarding solanezumab - does it work, does it not and yet in the media (here in Aus) we hear minimal about TauRx and LMTX. Waiting for real results to come out from LIly regarding the DIAN study (which is taking only EOAD participants), and final results from LMTX studies in 2016.
So glad to hear that you are doing well emotionally and psychologically. I can only imagine what you have experienced. You are one strong lady and I thankyou for sharing.
Mg, I am so sorry to hear of the great challenges you face with EOAD. When I was diagnosed, my neurologist put me on Aricept (generic is Donepezil) and then about 6 month later added Namenda. There is some evidence that giving these later stage drugs early on in the disease may slow the progression. I have remained on those drugs as well throughout the clinical trials. All the best!
DeleteMegan, great to hear things are under control. If you remained on Aricept and Namenda throughout the trial, how do we know if LMTX is effective? Could the "effectiveness" of LMTX due to other factors? Thank you for sharing...very glad to hear you are doing well.
DeleteBetween 2010 (when I started Aricept and Namenda) and 2013 when I began the LMTX Phase 3, there was mild-moderate decline in my cognitive test scores with my neurologist. Since LMTX, no decline.
DeleteHi megan, just want to check with you. There are 2 Lmtx AD phase 3 trial. 15 months and 18 months period. Which one did you enrol?understood that you completed the trial in jan. Thanks for sharing.
ReplyDeleteHello cw. I looked this up in my study consent forms to verify. The name of the study was: "Randomized, Double-Blind, Placebo-Controlled, Parallel-Group, 18-Month Safety and Efficacy Study of Leuco-methylthioninium bis(hydromethanesulfonate) in Subjects with Mild Alzheimer’s Disease" Protocol #:TRx-237-005
DeleteHi Megan,
ReplyDeleteThanks for sharing. Do you have a AD support group and did you share with them this amazing journey that you are going through now? Hope they are encourage by your progress. Do share with us if there are similar cases like you that go through this trial. Hope this drug will be out by next year and help more people to battle this devastating disease.
Thanks cw..sorry fro the delay in responding. The only support groups locally (I limit my driving) were really for respite care. The support groups for beginning stage AD or Mild Cognitive Impairment were outside my driving safety zone. Yes...hoping this gets fast-tracked through FDA and other country's processes!
DeleteHi megan,
ReplyDeleteHow are things? Are you still on the lmtx and progressive 3 months monitoring. Lastly on this last day of 2015 i wish you and family a fruitful and prosperous 2016! Stay healthy..
Hi CW -- yes, still on the "open label" LMTX and all is well -- no decline! A very happy 2016 to you!
DeleteHi megan,
DeleteCan i check with you how after the 18 mths trial how long you have to wait for the open label lmtx? 4 weeks?
Cw
Yes, checking my records, it was four weeks.
DeleteHi Megan
ReplyDeleteHope you are still doing well on the LMTX open label TauRx program, and that 2016 will bring you great joy.
Saw this while googling:
http://www.wsj.com/articles/singapore-developer-of-alzheimers-drug-plans-u-s-ipo-1451543494
Look's like TauRx is almost ready to bring LMTX into the world! What great news!!
Regards. JK
Thanks JK -- all is well. I'm looking forward to this IPO!
DeleteHi Megan,
ReplyDeleteMy name is Chris. I have kind of been lurking on your blog here for a few months now. I just wanted to say hi and wish you a happy new year and wish you to be happy and healthy. My dad has Lewy Body Dementia. I hope LMTX will be able to help people with that as well. Thank you very kindly for sharing your life with us readers. Take care and looking forward to more of your blog posts.
While LMTX appears to be an effective medication I also look forward to more, possible treatments, therapies...combination therapies as well. I think that could be in the direction Alzheimer`s/Dementia and other diseases as such are being headed. Much like H.I.V. is now being treated. The main thing is to try to find out as much as we can about these neuro diseases. I am looking forward to find out what is going to be learned from the companies TauRx, Eli Lilly, Anavex, Biogen, Neuronix... etc. As well as
other possible treatments like Deep Brain Stimulation and Transcranial Magnetic Stimulation...etc.
I also hope if Hillary Clinton does get elected president I hope she delivers on her Alzheimer`s plan to fund $2 billion dollars annually for 10 years. Funding has to be in the billions, not the millions. Sounds like with her plan,we may finally get the amount of funding needed to finally end Alzheimer`s.
I Chris -- thank you for your kind words and all the best to your Dad.
ReplyDeleteYes, there are some other therapies in process, and YES I hope our next President pushes for much more $$. I would think conservatives would get on board with that, as the cost to the US economy if no treatment is found will be staggering.
Hi Megan,
ReplyDeleteHow are you? Taurx phase 3 result is out for mild to moderate trial. It shows no statistical signifcance for subgroup that are on addon therapy meaning taking existing drugs on top of lmtx. However study shown that subgroup that took only lmtx alone shows 85% stop progression which is highly statistical signifcance. My advise to you is do not take combination of drugs which might reduce the benefit of lmtx on you. Well, if taurx cannot get aoproval for FDA based on monotherapy, i am afraid that lmtx might not be available anymore and those who benefit from it so far will be disappointing. Pray hard
Thanks, cw. I am discouraged, even though this report was for the 015 protocol (mild to moderate AD), and my group (005 just mild AD) results will be out in October. Nevertheless, with this failure, I doubt the FDA will approve even if my group results are better. I do know that so far it appears to be working for me, and I believe I will be on the open label for as long as the drug is in trial for frontotemporal dementia.
Delete