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DMD's and SPMS...should DMD's be continued when Dx changes...
The following was a question posed to a neurologist on the MS Society website in Canada on DMD's and SPMS that I thought might interest someone besides me:
I'm wondering what the current thinking is about continuing disease modifying drugs if your MS seems to have made the jump to secondary progressive. Is there benefit to be had from continuing them?
A :
The decision of whether or not to continue therapy, and for how long, once MS has become secondary progressive is a difficult one.
If MS is becoming worse because of incomplete recovery from relapses, but is stable between relapses, then it is still relapsing-remitting in nature. In such a case, a change in therapy or an escalation to a second line therapy would be considered.
It is when there is gradual progression of the disease unrelated to relapses that MS is considered to have become secondary progressive. It is not always possible to precisely define when MS has become secondary progressive. It can take a year or more of follow up to be sure that the disease course has truly become progressive, independent of relapses. Usually treatment is continued while there is still any uncertainty about whether the MS is relapsing-remitting or progressive.
Once it is clear that MS has become progressive, the expectation of any significant benefit from our currently available disease modifying therapies would be very limited. While treatment may still reduce superimposed relapses and reduce inflammatory damage as seen on MRI, it does not have a significant impact on the continued gradual progression that is the most troublesome feature of secondary progressive disease. In most cases, therapy will therefore eventually be discontinued. Sometimes, if an individual has had very active MS or continues to have superimposed relapses in early secondary progressive MS, then the neurologist might recommend that therapy be continued. In someone with longer standing secondary progressive MS, a higher disability score and no superimposed relapses, therapy would almost always be stopped. At the moment, there is no available disease modifying therapy for non-relapsing secondary progressive MS and so the decision to stop treatment can be especially tough on both the physician and the individual with MS. Ultimately though, the decision of when to stop treatment is one that is usually made on a case by case basis and there is no one right answer for all people.
Rena
I'm wondering what the current thinking is about continuing disease modifying drugs if your MS seems to have made the jump to secondary progressive. Is there benefit to be had from continuing them?
A :
The decision of whether or not to continue therapy, and for how long, once MS has become secondary progressive is a difficult one.
If MS is becoming worse because of incomplete recovery from relapses, but is stable between relapses, then it is still relapsing-remitting in nature. In such a case, a change in therapy or an escalation to a second line therapy would be considered.
It is when there is gradual progression of the disease unrelated to relapses that MS is considered to have become secondary progressive. It is not always possible to precisely define when MS has become secondary progressive. It can take a year or more of follow up to be sure that the disease course has truly become progressive, independent of relapses. Usually treatment is continued while there is still any uncertainty about whether the MS is relapsing-remitting or progressive.
Once it is clear that MS has become progressive, the expectation of any significant benefit from our currently available disease modifying therapies would be very limited. While treatment may still reduce superimposed relapses and reduce inflammatory damage as seen on MRI, it does not have a significant impact on the continued gradual progression that is the most troublesome feature of secondary progressive disease. In most cases, therapy will therefore eventually be discontinued. Sometimes, if an individual has had very active MS or continues to have superimposed relapses in early secondary progressive MS, then the neurologist might recommend that therapy be continued. In someone with longer standing secondary progressive MS, a higher disability score and no superimposed relapses, therapy would almost always be stopped. At the moment, there is no available disease modifying therapy for non-relapsing secondary progressive MS and so the decision to stop treatment can be especially tough on both the physician and the individual with MS. Ultimately though, the decision of when to stop treatment is one that is usually made on a case by case basis and there is no one right answer for all people.
Rena
Hey Rena-girl,
I feel like Deb does when it comes to pulling the plug on the DMDs when/if your considered progressive.
Maybe it's denial or just stubborness on my part but feel that no matter there has to be an attempt to slow steady progression/decline and an exploration of all options.
I have read about Novatrone used along with a DMD. And, of course the Tysabri. I think it's a bail out to just tell a patient that there are no options. There is the reality that the options will not work, but the attempt should still be there.
Some of the response provided on that website is worrysome to me....
-shell
I feel like Deb does when it comes to pulling the plug on the DMDs when/if your considered progressive.
Maybe it's denial or just stubborness on my part but feel that no matter there has to be an attempt to slow steady progression/decline and an exploration of all options.
I have read about Novatrone used along with a DMD. And, of course the Tysabri. I think it's a bail out to just tell a patient that there are no options. There is the reality that the options will not work, but the attempt should still be there.
Some of the response provided on that website is worrysome to me....
-shell
Rena, thanks for bringing this up. If you notice at the bottom of each page there is a sec tion called "related discussions" and I noticed the following response to this same type of question here on the neurology forum (back in 2004)...
http://www.medhelp.org/posts/Neurology/RRMS-to-Secondary-Progressive/show/295817
"The diagnosis is a clinical one. In relapsing remitting MS a patient has relapses and then regains some of the function they lost. This is typically associated with an enhancing lesion on MRI. In secondary progressive MS there is a slow gradual decline in function over time with no improvement, there may still be relapses. During this stage there may be no enhancement on the MRI. There is no accepted standard for the progressive forms of MS. There is some evidence that the interferons (Avonex, Rebif, and Betaseron) may work. There is also evidence that stronger chemotherapeutic agents may help. A consultation with a MS specialty center, such as the Mellen Center at the Cleveland Clinic, would be recommended. Then based upon your case the proper therapeutic agent can be initiated. Good luck. "
This is such an important discussion because I'm remembering that a large percentage of RRMS patients eventually become SPMS. It would be useful to have a good understanding of how that is determined.
Deb makes an excellent argument for continuing with DMD's even if the disease course has changed. What if it is helping just one small function? That is certainly better than nothing at all.
Perhaps as imaging technology improves the issue of enhancing lesions as a benchmark for SPMS will be a larger factor, as the CC neuro indicated in his answer.
thanks again for sharing this.
wishing you well,
Lulu
http://www.medhelp.org/posts/Neurology/RRMS-to-Secondary-Progressive/show/295817
"The diagnosis is a clinical one. In relapsing remitting MS a patient has relapses and then regains some of the function they lost. This is typically associated with an enhancing lesion on MRI. In secondary progressive MS there is a slow gradual decline in function over time with no improvement, there may still be relapses. During this stage there may be no enhancement on the MRI. There is no accepted standard for the progressive forms of MS. There is some evidence that the interferons (Avonex, Rebif, and Betaseron) may work. There is also evidence that stronger chemotherapeutic agents may help. A consultation with a MS specialty center, such as the Mellen Center at the Cleveland Clinic, would be recommended. Then based upon your case the proper therapeutic agent can be initiated. Good luck. "
This is such an important discussion because I'm remembering that a large percentage of RRMS patients eventually become SPMS. It would be useful to have a good understanding of how that is determined.
Deb makes an excellent argument for continuing with DMD's even if the disease course has changed. What if it is helping just one small function? That is certainly better than nothing at all.
Perhaps as imaging technology improves the issue of enhancing lesions as a benchmark for SPMS will be a larger factor, as the CC neuro indicated in his answer.
thanks again for sharing this.
wishing you well,
Lulu
I guess I'm just very skeptical by nature, but I'm not so sure the plug should be pulled on the DMDs when the disease becomes progressive. I know it's on a case by case basis, but I fear that some physicians may be willing to pull the plug a little too quickly because of insurance pressures. I guess it was my rocky road to diagnosis that made me think this way.
Besides, who really knows what is going on in the brain with people with MS without opening it up? My neuro has stated that there were people that he didn't think had MS and when an autopsy was performed, there were lesions spotted. I don't think the equipment and the knowledge base is there yet to make the determination whether or not DMDs are no longer working. Maybe it's no longer working for the part of the brain that controls walking . . . but what about the area of the brain that controls speech or thinking? Is it still working there?
There are still too many unanswered questions in regards to MS. No one even knows what causes it. I think it's a huge gamble to stop medicines that could be the only thing that keeps the person from greater disability in other areas besides the ability to move around.
Also, I've read studies of some DMDs like Copaxone for men with PPMS that have benefited them. I could be mistaken, but I think I remember something about this.
My sister has a more progressive MS. She was never diagnosed with SPMS (still at RRMS), but I think she's there. She notices benefits from her Tysabri treatments. At the end of the month, she feels less energy than just after her treatments. She's still unable to walk, but there does appear to be some benefits.
I'm just a little bit skeptical. I know that this is pretty much standard operating procedure in regards to treating people with SPMS, but I never have felt good about it. Maybe I just don't feel good about SPMS or PPMS, anyway. It really does stink with thinking that there's just nothing there that will help.
Besides, who really knows what is going on in the brain with people with MS without opening it up? My neuro has stated that there were people that he didn't think had MS and when an autopsy was performed, there were lesions spotted. I don't think the equipment and the knowledge base is there yet to make the determination whether or not DMDs are no longer working. Maybe it's no longer working for the part of the brain that controls walking . . . but what about the area of the brain that controls speech or thinking? Is it still working there?
There are still too many unanswered questions in regards to MS. No one even knows what causes it. I think it's a huge gamble to stop medicines that could be the only thing that keeps the person from greater disability in other areas besides the ability to move around.
Also, I've read studies of some DMDs like Copaxone for men with PPMS that have benefited them. I could be mistaken, but I think I remember something about this.
My sister has a more progressive MS. She was never diagnosed with SPMS (still at RRMS), but I think she's there. She notices benefits from her Tysabri treatments. At the end of the month, she feels less energy than just after her treatments. She's still unable to walk, but there does appear to be some benefits.
I'm just a little bit skeptical. I know that this is pretty much standard operating procedure in regards to treating people with SPMS, but I never have felt good about it. Maybe I just don't feel good about SPMS or PPMS, anyway. It really does stink with thinking that there's just nothing there that will help.
Interesting to me. I wonder what progression means. Does is mean little things that happen as time goes on such as losing the ability to move a certain body part when they has been no relapse?
Or continued worsening of the ability to walk when there is no relapse?
I feel like I am lost in this.
LA
Or continued worsening of the ability to walk when there is no relapse?
I feel like I am lost in this.
LA
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