Re: tysabri just wondering.....

September 29, 2011

I was at an MS presentation last night & several folk there say they aren't taking any of the CRAB-T drugs. Some feel their symptoms aren't so serious that they need to take anything or feel taking the drugs isn't worth the side effects. Also, the evening's presenter showed a slide that indicates the later you START taking CRAB-T drugs, the less effective they are at preventing disability and relapses. The theme of his presentation (which is actually intended for neurologists) is that it's important to properly diagnose MS (because there are other neurological disorders like NMO) early in its development. If diagnosed after the 1st or 2nd relapse, then the CRAB-T drugs can greatly reduce disease progression. The problem for many of us (maybe including yourself) is that by the time we were diagnosed, we had already suffered from years of relapses. Therefore, the CRAB-T drugs might not do much good.Dan U dao_nguu@...

To: MSersLife From: dscrider@...Date: Thu, 29 Sep 2011 13:12:53 +0000Subject: tysabri just wondering.....

I am curious how many people opt to not take any of the handful of treatments available. Fail on Rebif, fail with Copaxone, now although Tysabri has done some very positive things for me it is also doing some not very positive things for me too-liver enzymes, infections, starting to have flairs again.... The next drug in line for me is form of Chemo-starts with A (too lazy to look it up right now) but I am feeling like the medicine is poisoning me basically and what good does it do to save my brain and kill my liver. Some days I want to say if u quote one more statistic to me grrr but with Tysabri the info is changing all the time. 10 months ago when I started it I felt like i had made a choice based on informed decision but the info/stats risks are way different that I was told then kinda too late to exactly change my mind. Reality is my ms is agressive and my choices were limited but as things evolve I am really considering no drugs and seeing where i go from there. Any thoughts, do others do this, how is it going? ty Sherri

September 29, 2011

I was at an MS presentation last night & several folk there say they aren't taking any of the CRAB-T drugs. Some feel their symptoms aren't so serious that they need to take anything or feel taking the drugs isn't worth the side effects. Also, the evening's presenter showed a slide that indicates the later you START taking CRAB-T drugs, the less effective they are at preventing disability and relapses. The theme of his presentation (which is actually intended for neurologists) is that it's important to properly diagnose MS (because there are other neurological disorders like NMO) early in its development. If diagnosed after the 1st or 2nd relapse, then the CRAB-T drugs can greatly reduce disease progression. The problem for many of us (maybe including yourself) is that by the time we were diagnosed, we had already suffered from years of relapses. Therefore, the CRAB-T drugs might not do much good.Dan U dao_nguu@...

To: MSersLife From: dscrider@...Date: Thu, 29 Sep 2011 13:12:53 +0000Subject: tysabri just wondering.....

I am curious how many people opt to not take any of the handful of treatments available. Fail on Rebif, fail with Copaxone, now although Tysabri has done some very positive things for me it is also doing some not very positive things for me too-liver enzymes, infections, starting to have flairs again.... The next drug in line for me is form of Chemo-starts with A (too lazy to look it up right now) but I am feeling like the medicine is poisoning me basically and what good does it do to save my brain and kill my liver. Some days I want to say if u quote one more statistic to me grrr but with Tysabri the info is changing all the time. 10 months ago when I started it I felt like i had made a choice based on informed decision but the info/stats risks are way different that I was told then kinda too late to exactly change my mind. Reality is my ms is agressive and my choices were limited but as things evolve I am really considering no drugs and seeing where i go from there. Any thoughts, do others do this, how is it going? ty Sherri

September 29, 2011

For me, I was seriously considering at one point not continuing to medicate. Failed Avonex, Copaxone worked well up until this January, so the next step was Tysabri. Now, my disability from MS is relatively low (left sided weakness and decreased sensation), the major day to day symptoms I have are mostly sensory - I'm still not convinced that my muscle pain is caused by MS and not my fibromyalgia. But I just can't deal with the flares - and if I go unmedicated, I flare. My flare's are mild enough, considering, but still, it's not something I want to have to deal with, so I chose medication. A friend of my sister has MS and is on no medication - not even for any symptoms. BUT, she has a mild case, she's been diagnosed for years, evidently. But, everything is filtered through my sister, so she may not tell my sister everything.

Tina

I am curious how many people opt to not take any of the handful of treatments available. Fail on Rebif, fail with Copaxone, now although Tysabri has done some very positive things for me it is also doing some not very positive things for me too-liver enzymes, infections, starting to have flairs again.... The next drug in line for me is form of Chemo-starts with A (too lazy to look it up right now) but I am feeling like the medicine is poisoning me basically and what good does it do to save my brain and kill my liver. Some days I want to say if u quote one more statistic to me grrr but with Tysabri the info is changing all the time. 10 months ago when I started it I felt like i had made a choice based on informed decision but the info/stats risks are way different that I was told then kinda too late to exactly change my mind. Reality is my ms is agressive and my choices were limited but as things evolve I am really considering no drugs and seeing where i go from there. Any thoughts, do others do this, how is it going? ty Sherri

September 29, 2011

For me, I was seriously considering at one point not continuing to medicate. Failed Avonex, Copaxone worked well up until this January, so the next step was Tysabri. Now, my disability from MS is relatively low (left sided weakness and decreased sensation), the major day to day symptoms I have are mostly sensory - I'm still not convinced that my muscle pain is caused by MS and not my fibromyalgia. But I just can't deal with the flares - and if I go unmedicated, I flare. My flare's are mild enough, considering, but still, it's not something I want to have to deal with, so I chose medication. A friend of my sister has MS and is on no medication - not even for any symptoms. BUT, she has a mild case, she's been diagnosed for years, evidently. But, everything is filtered through my sister, so she may not tell my sister everything.

Tina

I am curious how many people opt to not take any of the handful of treatments available. Fail on Rebif, fail with Copaxone, now although Tysabri has done some very positive things for me it is also doing some not very positive things for me too-liver enzymes, infections, starting to have flairs again.... The next drug in line for me is form of Chemo-starts with A (too lazy to look it up right now) but I am feeling like the medicine is poisoning me basically and what good does it do to save my brain and kill my liver. Some days I want to say if u quote one more statistic to me grrr but with Tysabri the info is changing all the time. 10 months ago when I started it I felt like i had made a choice based on informed decision but the info/stats risks are way different that I was told then kinda too late to exactly change my mind. Reality is my ms is agressive and my choices were limited but as things evolve I am really considering no drugs and seeing where i go from there. Any thoughts, do others do this, how is it going? ty Sherri

September 29, 2011

Have you considered LDN? It is the only thing to work for me

ï»¿ ï»¿ ~*~Hugs~*~

~*~Akiba~*~

Pragmatic Visionary

http://www.affiliates-natural-salt-lamps.com/pages/156.php

-- Re: tysabri just wondering.....

For me, I was seriously considering at one point not continuing to medicate. Failed Avonex, Copaxone worked well up until this January, so the next step was Tysabri. Now, my disability from MS is relatively low (left sided weakness and decreased sensation), the major day to day symptoms I have are mostly sensory - I'm still not convinced that my muscle pain is caused by MS and not my fibromyalgia. But I just can't deal with the flares - and if I go unmedicated, I flare. My flare's are mild enough, considering, but still, it's not something I want to have to deal with, so I chose medication. A friend of my sister has MS and is on no medication - not even for any symptoms. BUT, she has a mild case, she's been diagnosed for years, evidently. But, everything is filtered through my sister, so she may not tell my sister everything. Tina

I am curious how many people opt to not take any of the handful of treatments available. Fail on Rebif, fail with Copaxone, now although Tysabri has done some very positive things for me it is also doing some not very positive things for me too-liver enzymes, infections, starting to have flairs again.... The next drug in line for me is form of Chemo-starts with A (too lazy to look it up right now) but I am feeling like the medicine is poisoning me basically and what good does it do to save my brain and kill my liver. Some days I want to say if u quote one more statistic to me grrr but with Tysabri the info is changing all the time. 10 months ago when I started it I felt like i had made a choice based on informed decision but the info/stats risks are way different that I was told then kinda too late to exactly change my mind. Reality is my ms is agressive and my choices were limited but as things evolve I am really considering no drugs and seeing where i go from there. Any thoughts, do others do this, how is it going? ty Sherri

September 29, 2011

Have you considered LDN? It is the only thing to work for me

ï»¿ ï»¿ ~*~Hugs~*~

~*~Akiba~*~

Pragmatic Visionary

http://www.affiliates-natural-salt-lamps.com/pages/156.php

-- Re: tysabri just wondering.....

For me, I was seriously considering at one point not continuing to medicate. Failed Avonex, Copaxone worked well up until this January, so the next step was Tysabri. Now, my disability from MS is relatively low (left sided weakness and decreased sensation), the major day to day symptoms I have are mostly sensory - I'm still not convinced that my muscle pain is caused by MS and not my fibromyalgia. But I just can't deal with the flares - and if I go unmedicated, I flare. My flare's are mild enough, considering, but still, it's not something I want to have to deal with, so I chose medication. A friend of my sister has MS and is on no medication - not even for any symptoms. BUT, she has a mild case, she's been diagnosed for years, evidently. But, everything is filtered through my sister, so she may not tell my sister everything. Tina

I am curious how many people opt to not take any of the handful of treatments available. Fail on Rebif, fail with Copaxone, now although Tysabri has done some very positive things for me it is also doing some not very positive things for me too-liver enzymes, infections, starting to have flairs again.... The next drug in line for me is form of Chemo-starts with A (too lazy to look it up right now) but I am feeling like the medicine is poisoning me basically and what good does it do to save my brain and kill my liver. Some days I want to say if u quote one more statistic to me grrr but with Tysabri the info is changing all the time. 10 months ago when I started it I felt like i had made a choice based on informed decision but the info/stats risks are way different that I was told then kinda too late to exactly change my mind. Reality is my ms is agressive and my choices were limited but as things evolve I am really considering no drugs and seeing where i go from there. Any thoughts, do others do this, how is it going? ty Sherri

September 29, 2011

Well, I am going it without disease modifying drugs. I was previously on Avonex for five years. I did fine on it but I got sick of shots and quit it on my own. My neuro was upset but I just didn't want shots anymore. Maybe I would feel differently if my MS was aggressive. I just don't know.Do you have Primary Progressive MS or are you Secondary Progressive.. or? I was at one time classed as SPMS but I don't know if that is right or not.I'm glad you wrote. Please keep writing!!hugsSharonThis email is a natural hand made product. The slight variations in spelling

and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. tysabri just wondering.....I am curious how many people opt to not take any of the handful of treatments available. Fail on Rebif, fail with Copaxone, now although Tysabri has done some very positive things for me it is also doing some not very positive things for me too-liver enzymes, infections, starting to

have flairs again.... The next drug in line for me is form of Chemo-starts with A (too lazy to look it up right now) but I am feeling like the medicine is poisoning me basically and what good does it do to save my brain and kill my liver. Some days I want to say if u quote one more statistic to me grrr but with Tysabri the info is changing all the time. 10 months ago when I started it I felt like i had made a choice based on informed decision but the info/stats risks are way different that I was told then kinda too late to exactly change my mind. Reality is my ms is agressive and my choices were limited but as things evolve I am really considering no drugs and seeing where i go from there. Any thoughts, do others do this, how is it going? ty Sherri------------------------------------

September 30, 2011

I'm with you too, Sharon. I quit the Copaxone; have a 3 month supplyin my fridge--not sure what the heck to do with it. Daily shots were justbugging me.Sherri, I was also on Ty; it helped me a lot. Went from walking with a caneto walking unassisted. Was on it for 3 years. Doc said I had to come off it,as that is recommended--well, more than recommended, mandatory I supposeyou'd say. Have you heard anything about a

med called LDN, Sherri? Sharon anda few others here swear by it--not FDA approved, but still effective. I've beendebating about it myself. That or the new oral med--but that has many sideeffects and things to look out for, like liver, kidney, eye problems, etc.I wish you luck in your decision, we are here for you, no matter what.hugs,KateTo: "MSersLife " <MSersLife >Sent: Thursday, September 29, 2011 11:29 PMSubject: Re: tysabri just wondering.....

Well, I am going it without disease modifying drugs. I was previously on Avonex for five years. I did fine on it but I got sick of shots and quit it on my own. My neuro was upset but I just didn't want shots anymore. Maybe I would feel differently if my MS was aggressive. I just don't know.Do you have Primary Progressive MS or are you Secondary Progressive.. or? I was at one time classed as SPMS but I don't know if that is right or not.I'm glad you wrote. Please keep writing!!hugsSharonThis email is a natural hand made product. The slight variations in spelling

and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. tysabri just wondering.....I am curious how many people opt to not take any of the handful of treatments available. Fail on Rebif, fail with Copaxone, now although Tysabri has done some very positive things for me it is also doing some not very positive things for me too-liver enzymes, infections,

starting to

have flairs again.... The next drug in line for me is form of Chemo-starts with A (too lazy to look it up right now) but I am feeling like the medicine is poisoning me basically and what good does it do to save my brain and kill my liver. Some days I want to say if u quote one more statistic to me grrr but with Tysabri the info is changing all the time. 10 months ago when I started it I felt like i had made a choice based on informed decision but the info/stats risks are way different that I was told then kinda too late to exactly change my mind. Reality is my ms is agressive and my choices were limited but as things evolve I am really considering no drugs and seeing where i go from there. Any thoughts, do others do this, how is it going? ty Sherri------------------------------------

September 30, 2011

I'm with you too, Sharon. I quit the Copaxone; have a 3 month supplyin my fridge--not sure what the heck to do with it. Daily shots were justbugging me.Sherri, I was also on Ty; it helped me a lot. Went from walking with a caneto walking unassisted. Was on it for 3 years. Doc said I had to come off it,as that is recommended--well, more than recommended, mandatory I supposeyou'd say. Have you heard anything about a

med called LDN, Sherri? Sharon anda few others here swear by it--not FDA approved, but still effective. I've beendebating about it myself. That or the new oral med--but that has many sideeffects and things to look out for, like liver, kidney, eye problems, etc.I wish you luck in your decision, we are here for you, no matter what.hugs,KateTo: "MSersLife " <MSersLife >Sent: Thursday, September 29, 2011 11:29 PMSubject: Re: tysabri just wondering.....

Well, I am going it without disease modifying drugs. I was previously on Avonex for five years. I did fine on it but I got sick of shots and quit it on my own. My neuro was upset but I just didn't want shots anymore. Maybe I would feel differently if my MS was aggressive. I just don't know.Do you have Primary Progressive MS or are you Secondary Progressive.. or? I was at one time classed as SPMS but I don't know if that is right or not.I'm glad you wrote. Please keep writing!!hugsSharonThis email is a natural hand made product. The slight variations in spelling

and grammar enhance its individual character and beauty and in no way are to be considered flaws or defects. tysabri just wondering.....I am curious how many people opt to not take any of the handful of treatments available. Fail on Rebif, fail with Copaxone, now although Tysabri has done some very positive things for me it is also doing some not very positive things for me too-liver enzymes, infections,

starting to

have flairs again.... The next drug in line for me is form of Chemo-starts with A (too lazy to look it up right now) but I am feeling like the medicine is poisoning me basically and what good does it do to save my brain and kill my liver. Some days I want to say if u quote one more statistic to me grrr but with Tysabri the info is changing all the time. 10 months ago when I started it I felt like i had made a choice based on informed decision but the info/stats risks are way different that I was told then kinda too late to exactly change my mind. Reality is my ms is agressive and my choices were limited but as things evolve I am really considering no drugs and seeing where i go from there. Any thoughts, do others do this, how is it going? ty Sherri------------------------------------

September 30, 2011

Sharon, does Avonex even work on Secondary Progressive? I was under the impression that it did not.Tina