Aa
Tysabri as first-line option
You might find this of interest- I have always wondered why we startt out wit hthe weakest drugs to treat our MS instead of going at it as agressively as possible -
Biogen Idec and Elan Submit Applications for First-Line Use of TYSABRI in anti-JCV Antibody Negative Patients with MS
http://tinyurl.com/bclkvkx
Biogen Idec and Elan Submit Applications for First-Line Use of TYSABRI in anti-JCV Antibody Negative Patients with MS
http://tinyurl.com/bclkvkx
Important note twopack.....
Here are a few of my sources that began my journey on learning about the two:
From the father of interferon's website (initially discovered for cancer):
https://www.interferonsource.com/content/interferons
And, father and mother (my words, lol) of the peptide (copax)
http://www.weizmann-usa.org/tomorrow-lab/news/article-detail/06-01-02/T_Cells_for_Brain_Cells_Can_Autoimmunity_Fend_Off_Neurodegeneration.aspx
http://www.proneuron.com/news/Cov01_02/Cov01_02_03.html
Please remember - These are foundational pieces. Some will like the depth of them, some will not. But, they provide major background on the mechanism by which the unbelievable medicine was discovered and work.
-Shell
Here are a few of my sources that began my journey on learning about the two:
From the father of interferon's website (initially discovered for cancer):
https://www.interferonsource.com/content/interferons
And, father and mother (my words, lol) of the peptide (copax)
http://www.weizmann-usa.org/tomorrow-lab/news/article-detail/06-01-02/T_Cells_for_Brain_Cells_Can_Autoimmunity_Fend_Off_Neurodegeneration.aspx
http://www.proneuron.com/news/Cov01_02/Cov01_02_03.html
Please remember - These are foundational pieces. Some will like the depth of them, some will not. But, they provide major background on the mechanism by which the unbelievable medicine was discovered and work.
-Shell
The information isn't necessarily suspect. I certainly hope it's truthful. I wonder if it is slanted. It certainly CAN be offered with bias (in either direction) depending on the investment advice being offered with it.
Pharmaceutical reports are offered so investors can consider which stocks offer the best odds of a return on investment. Development projections can drive price better than the reality to come. Smart investors know when to jump and out, right?
Some of these reports are interesting to scan while we're in the trenches but they aren't anything near as helpful as a ready-to-use product that is ready to use.
Frankly, too many people pass through here, spot read (without discernment) and then pass information on as something it was never intended to be. I'm betting few people even open the links provided. I think we need to specify our sources because otherwise people make assumptions and decisions based on sketchy information that was likely posted with the sole intention of sparking discussion.
Pharmaceutical reports are offered so investors can consider which stocks offer the best odds of a return on investment. Development projections can drive price better than the reality to come. Smart investors know when to jump and out, right?
Some of these reports are interesting to scan while we're in the trenches but they aren't anything near as helpful as a ready-to-use product that is ready to use.
Frankly, too many people pass through here, spot read (without discernment) and then pass information on as something it was never intended to be. I'm betting few people even open the links provided. I think we need to specify our sources because otherwise people make assumptions and decisions based on sketchy information that was likely posted with the sole intention of sparking discussion.
I can understand why Tysabri is not, at least at this time, a first-line treatment.
It makes sense to me to go with the 'mildest' possibilities, which often, but by no means always, wreak less havoc on the body as a whole. When these don't work or no longer work, I can see bringing out the heavier artillery.
This is a great discussion, by the way. Thanks, Lu, for starting it.
ess
It makes sense to me to go with the 'mildest' possibilities, which often, but by no means always, wreak less havoc on the body as a whole. When these don't work or no longer work, I can see bringing out the heavier artillery.
This is a great discussion, by the way. Thanks, Lu, for starting it.
ess
Have to add to the discussion and point out the use of the term "moderate" as it relates to traditional disease modifiers. It's simply not so as it relates to the potential of stopping MS progression and attacks.
If however, we discuss "moderate" as it relates to "risk" then interferon, peptides like copax, and gylenya would indeed be moderate in comparison to tysabri, and those chemo-like meds and others simply due to the potential life threatening side affects. Drugs that even when stopped users quite possibly suffer ill effects. Quality of life is but one measurment when making these important decisions.
Lets not forget that what works for one RRMSer may not work for another, and especially so for PPMS and SPMS (where all disease modifiers have shown minimal, if any success).
For those in the majority (RRMS) who have successes with either med available, and the good fortune of good doctors coordinating those efforts (because all options are on the table for them), I'd venture to say they would hardly consider the line of defense chosen as weak, or moderate. I've studied interferon, and the peptides. What they do to the immune system is significant.
Weak treatment in my mind is no treatment. i.e. rolling the dice. Not knocking it all. I've contemplated it myself. Each of us have that choice
-Shell
If however, we discuss "moderate" as it relates to "risk" then interferon, peptides like copax, and gylenya would indeed be moderate in comparison to tysabri, and those chemo-like meds and others simply due to the potential life threatening side affects. Drugs that even when stopped users quite possibly suffer ill effects. Quality of life is but one measurment when making these important decisions.
Lets not forget that what works for one RRMSer may not work for another, and especially so for PPMS and SPMS (where all disease modifiers have shown minimal, if any success).
For those in the majority (RRMS) who have successes with either med available, and the good fortune of good doctors coordinating those efforts (because all options are on the table for them), I'd venture to say they would hardly consider the line of defense chosen as weak, or moderate. I've studied interferon, and the peptides. What they do to the immune system is significant.
Weak treatment in my mind is no treatment. i.e. rolling the dice. Not knocking it all. I've contemplated it myself. Each of us have that choice
-Shell
I realize the interferons didn't work for you Ann. I'm very sorry about that. We've both been around long enough for me to know you have had a very rough time of it all along the way. Your comments demonstrate one of the points I tried to make - that is, no one drug is the best for everyone or will remain the best drug throughout treatment.
All of us with MS have drawn a short straw. Unfortunately, you seem to have ended up with one of the shortest of the short. That's not meant to be funny (and I know it isn't!). It's just the truth of MS.
MS leaves us guessing about way too many things. Treatment choice is just one educated guess we have to make - and then question with a series of 'what if-ing'. Each choice made eliminates all others available at a given moment in time. The best we can do is learn as much as possible, find a trustworthy physician to guide us, make a reasonable plan and then move forward confidently in our chosen direction.
Many thanks to you and your family Ann. Whatever the reason, diseases of the immune system certainly seem to be on the rise. Research can't proceed without people who are willing to participate even though personal rewards aren't expected.
All of us with MS have drawn a short straw. Unfortunately, you seem to have ended up with one of the shortest of the short. That's not meant to be funny (and I know it isn't!). It's just the truth of MS.
MS leaves us guessing about way too many things. Treatment choice is just one educated guess we have to make - and then question with a series of 'what if-ing'. Each choice made eliminates all others available at a given moment in time. The best we can do is learn as much as possible, find a trustworthy physician to guide us, make a reasonable plan and then move forward confidently in our chosen direction.
Many thanks to you and your family Ann. Whatever the reason, diseases of the immune system certainly seem to be on the rise. Research can't proceed without people who are willing to participate even though personal rewards aren't expected.
"We can certainly talk about both here but I doubt most MS forum members come here looking for investment opportunities. "
I guess I don't understand why you consider information about a drug, or drug company, suspect because it is found in the financial press.
They publish the informationfor the benefit of thosse looking to profit from it, but the information is the same, isn't it?
I guess I don't understand why you consider information about a drug, or drug company, suspect because it is found in the financial press.
They publish the informationfor the benefit of thosse looking to profit from it, but the information is the same, isn't it?
Perhaps I wasn't clear. Your example - being an active member of a team that discussed and decided the best treatment direction for you as an individual - is exactly what each PwMS needs. Many of us don't get that at any point along the way. Males have a better chance (with the probable exception of those diagnosed in the VA health care system).
I have NO problem with profit motive. Business is supposed to make money. Even non-profits have to run in the black if they want to continue to exist or hope to grow. But problems seem to appear when health care and health care products as business are confused with health care and health care availability as service industry. We can certainly talk about both here but I doubt most MS forum members come here looking for investment opportunities.
Of course there are tons of pharmaceuticals (legal and not) that cause more harm than good. People still seem to demand them so their manufacturers and distributors are able to pocket a handsome profit. (I am NOT talking about Tysabri here!)
I have NO problem with profit motive. Business is supposed to make money. Even non-profits have to run in the black if they want to continue to exist or hope to grow. But problems seem to appear when health care and health care products as business are confused with health care and health care availability as service industry. We can certainly talk about both here but I doubt most MS forum members come here looking for investment opportunities.
Of course there are tons of pharmaceuticals (legal and not) that cause more harm than good. People still seem to demand them so their manufacturers and distributors are able to pocket a handsome profit. (I am NOT talking about Tysabri here!)
I had absolutely no success with interferrons. ( I had over 3 relapses that required treatment in a year, and new symptoms.) Some may, but it was a complete waste of my time. If they are working for you, the by all means, go ahead and use them.
My extended family (10 cousins) on one side are consiering joining a family study. All five girls have an autoimmune disease, one of the boys is possible lupis, and one of the other boys had a child with an auto-immune like cancer. I think that families such as mine onening themselves up to study holds a key. We all have different auto-immune diseases, but wow what a genetic link.
the future of research and medicdation development rests in looking beyond the one disease to a commen thread. I hope that my family can help with this even though nothing will come of it in our time, maybe just maybe it will help our children and grandchildren.
We must never be affraid to try. Try new therapies and stay flexable. We all have e tendency to say that whatever therapy we are using that seems to work is the best one. It may be for you or me, but we can't say that for all. I think that there is also the fear that if we find something that seems to work better that we doubt our chosen or perscribed treatment. We wonder if we have waised our time. We have second thoughts that we harbor, because we might be on the wrong path.
All of this to say that it is important that we all talk and share our successes and failures with different treatments.
Thank you all,
Ann
My extended family (10 cousins) on one side are consiering joining a family study. All five girls have an autoimmune disease, one of the boys is possible lupis, and one of the other boys had a child with an auto-immune like cancer. I think that families such as mine onening themselves up to study holds a key. We all have different auto-immune diseases, but wow what a genetic link.
the future of research and medicdation development rests in looking beyond the one disease to a commen thread. I hope that my family can help with this even though nothing will come of it in our time, maybe just maybe it will help our children and grandchildren.
We must never be affraid to try. Try new therapies and stay flexable. We all have e tendency to say that whatever therapy we are using that seems to work is the best one. It may be for you or me, but we can't say that for all. I think that there is also the fear that if we find something that seems to work better that we doubt our chosen or perscribed treatment. We wonder if we have waised our time. We have second thoughts that we harbor, because we might be on the wrong path.
All of this to say that it is important that we all talk and share our successes and failures with different treatments.
Thank you all,
Ann
I think we shall forever have to agree to disagree, my friend twopack :-)
I am one who believes strongly that the profit motive is not iinherently evil. Once upon a time, in a land far, far away, I was a financial consultant (stock broker). One of the compensation models available to my clients was assets based. Annually I received a fee based on the size of your account (assets under management). Thee more money the client made, the more money I made! If I lost money for the client my fee would be smaller.
Seems to me that the same holds true, more or less, for durg comapnies. The more people the help with their products, themore money they will make, the more people they harm with their products, the less money they will make.
Your second post raises the notion of individual choice. There are arguments for and against each path we might take. There are most certainly risks associated with Tysabri. I was informed of these risks by two MS specialists when they independantly recommended that Tysbari would be the best choice for me.
These risks need to be balanced against the opportunity cost of choosing a more moderate approach, like one of the CRABs. I could lower my risk profile by starting with a CRAB, but the cost would be time wasted should that CRAB prove ineffective. THis is a trade off that must be weighed by each of us who have been diagnosed with the funfest known as MS.
Yours, fighting the same fight from a different direction :-)
Kyle
I am one who believes strongly that the profit motive is not iinherently evil. Once upon a time, in a land far, far away, I was a financial consultant (stock broker). One of the compensation models available to my clients was assets based. Annually I received a fee based on the size of your account (assets under management). Thee more money the client made, the more money I made! If I lost money for the client my fee would be smaller.
Seems to me that the same holds true, more or less, for durg comapnies. The more people the help with their products, themore money they will make, the more people they harm with their products, the less money they will make.
Your second post raises the notion of individual choice. There are arguments for and against each path we might take. There are most certainly risks associated with Tysabri. I was informed of these risks by two MS specialists when they independantly recommended that Tysbari would be the best choice for me.
These risks need to be balanced against the opportunity cost of choosing a more moderate approach, like one of the CRABs. I could lower my risk profile by starting with a CRAB, but the cost would be time wasted should that CRAB prove ineffective. THis is a trade off that must be weighed by each of us who have been diagnosed with the funfest known as MS.
Yours, fighting the same fight from a different direction :-)
Kyle
The only new research on interferons I'm aware of was ONE study.
It cast doubt on the success of halting disease progression.
It confirmed the ability to decrease relapse rate.
It confirmed the value of interferons in treating MS.
The most revealing things about studies don't always appear as the major finding. Interferons and Copaxone are still good disease modifiers to use in the treatment of MS.
It cast doubt on the success of halting disease progression.
It confirmed the ability to decrease relapse rate.
It confirmed the value of interferons in treating MS.
The most revealing things about studies don't always appear as the major finding. Interferons and Copaxone are still good disease modifiers to use in the treatment of MS.
Once again showing all of us the value of sharing ideas, thoughts, knowledge, and feelings. This forum is priceless.
I'm glad you are doing so well Kyle. I'm not sure however that you realize how different your diagnosis and treatment journey may have been if you were female. It's different for us. Really.
No reason you shouldn't take advantage of what's been offered to you though. You are fortunate to have so few limiting symptoms despite the presumption of progression to SPMS. I hope Tysabri helps you continue to live well with MS. It's a good drug.
No reason you shouldn't take advantage of what's been offered to you though. You are fortunate to have so few limiting symptoms despite the presumption of progression to SPMS. I hope Tysabri helps you continue to live well with MS. It's a good drug.
“I have always wondered why we startt out wit hthe weakest drugs to treat our MS instead of going at it as agressively as possible”
Off the top of my head…..
In General:
**Because MS isn’t curable even when you start with the most powerful weapon?
** Because (as Shell mentioned) it is inaccurate to consider other disease modifiers weak?
**Because not everyone needs the most aggressive treatment on day one?
** Because many PwMS need to be observed and evaluated for a period of time before their potential disease course can be predicted with any degree of accuracy?
**Because the benefits of an aggressive treatment don’t always outweigh the risks?
**Because significant numbers of PwMS who comply with ‘less aggressive’ disease modifying drug regimens have experienced successful control of relapses.
**Because (barring significant evidence that contradicts standard protocol) medical science tends to hold steadfast to a long tested and successful strategy that dictates the least invasive, least toxic, least restrictive, and/or least costly treatment is the preferred choice for initial therapy?
If Tysabri is Considered the Most Aggressive Treatment:
**Because intravenous therapy is (by its nature) considered more invasive than orals or injectables (yup, even every day shots)?
**Because Tysabri therapy has historically been limited to 2 years duration? What then?
**Because Tysabri is the only treatment closely linked to an irreversible and commonly fatal complication?
**Because Tysabri carries the highest risk of serious relapse when it’s discontinued?
**Because most people aren't prepared to participate in making such an important decision immediately after diagnosis?
MS isn't an emergency. After diagnosis, people need time to adjust emotionally and educate themselves about the disease and treatment options. To be too aggressive initially only serves to place the physician in a power position and hinders patient participation in decision making, imo.
Off the top of my head…..
In General:
**Because MS isn’t curable even when you start with the most powerful weapon?
** Because (as Shell mentioned) it is inaccurate to consider other disease modifiers weak?
**Because not everyone needs the most aggressive treatment on day one?
** Because many PwMS need to be observed and evaluated for a period of time before their potential disease course can be predicted with any degree of accuracy?
**Because the benefits of an aggressive treatment don’t always outweigh the risks?
**Because significant numbers of PwMS who comply with ‘less aggressive’ disease modifying drug regimens have experienced successful control of relapses.
**Because (barring significant evidence that contradicts standard protocol) medical science tends to hold steadfast to a long tested and successful strategy that dictates the least invasive, least toxic, least restrictive, and/or least costly treatment is the preferred choice for initial therapy?
If Tysabri is Considered the Most Aggressive Treatment:
**Because intravenous therapy is (by its nature) considered more invasive than orals or injectables (yup, even every day shots)?
**Because Tysabri therapy has historically been limited to 2 years duration? What then?
**Because Tysabri is the only treatment closely linked to an irreversible and commonly fatal complication?
**Because Tysabri carries the highest risk of serious relapse when it’s discontinued?
**Because most people aren't prepared to participate in making such an important decision immediately after diagnosis?
MS isn't an emergency. After diagnosis, people need time to adjust emotionally and educate themselves about the disease and treatment options. To be too aggressive initially only serves to place the physician in a power position and hinders patient participation in decision making, imo.
This item appeared earlier - posted by another member with a different title and reference source. I didn’t respond then (and wasn’t going to now) as I prefer NOT to look to financial sources for medical information - especially when a pharmaceutical company was very recently called to task on this forum because of speculation its business practices involve motives that favor financial gain over consumer safety.
However…..
I think there has to be an alternative view.
MS requires treatment tailored to individual people. To always start MS treatment with Tysabri would be about the same as always starting diabetes treatment by using an insulin pump. It’s dangerously aggressive.
Anyone think we should go a step further and order up stem cell transplants for all (when/if they’re approved)?
The way I see this Tysabri probably does need to be offered earlier in the disease and used more frequently. But haven’t the financials reported increased Tysabri sales in the past 1-2 years anyway? Docs are apparently already making independent decisions about the appropriate time to advance individual patient therapy. I hope official requests don’t end up back-firing.
However…..
I think there has to be an alternative view.
MS requires treatment tailored to individual people. To always start MS treatment with Tysabri would be about the same as always starting diabetes treatment by using an insulin pump. It’s dangerously aggressive.
Anyone think we should go a step further and order up stem cell transplants for all (when/if they’re approved)?
The way I see this Tysabri probably does need to be offered earlier in the disease and used more frequently. But haven’t the financials reported increased Tysabri sales in the past 1-2 years anyway? Docs are apparently already making independent decisions about the appropriate time to advance individual patient therapy. I hope official requests don’t end up back-firing.
I often think about this as well, my friend told me I should be on tysabri but my Neuro does not prescribe it at all. He said hes waiting to see how it pans out over the next few years. Although he did offer me the oral treatment which is worse, so go figure. I think its simply about the risk:benefit ratio. I think thats why most people start on copaxone now because the serious side effects are very mild. Thats why I picked it. Now its not working I'm going for rebif. If that fails, maybe I'll push him for the tysabri.
Also I feel like I read somewhere that tysabri is only recommended for 2 years? Although I'm really not sure.
Also I feel like I read somewhere that tysabri is only recommended for 2 years? Although I'm really not sure.
After the new research about Intereffons, i completely understand wanting to start with something else!
When I was DX'd my doc put me in the SPMS class. He said I was likely beyond the reach of CRABs. My first and only DMD has been Tysabri.
Kyle
Kyle
Hey Lu -
I understand wanting the strongest for the beast, but the interferons are not weak by any means. I feel it's moreso weighing the potential risks vs benefits in any med we choose.
Totally feel however, it's a good option for doctors who want to prescribe the heavy hitters vs the traditional meds on inidividuals they feel it would benefit most.
-shell .
I understand wanting the strongest for the beast, but the interferons are not weak by any means. I feel it's moreso weighing the potential risks vs benefits in any med we choose.
Totally feel however, it's a good option for doctors who want to prescribe the heavy hitters vs the traditional meds on inidividuals they feel it would benefit most.
-shell .
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