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What Does The MRI Scan Report Indicate?
Question: my son was recently diagnosed with MS his MRI shows 11 lesions and the Dr is saying it is aggressively active they want to start him on Tysabri. after reviewing all of the possible side effects of this drug, I feel that there are other drugs available with lower risks than this one. My family has a history of autoimmune disorders and we have had three family deaths due to medications. He has had the JC virus test and it was negative but this drug still terrifies me and we are wondering if a less risky drug would work almost as well?
Brief Answer:
Patient and family Comfort level with risks are important to consider
Detailed Answer:
Good afternoon.
I am in agreement with your perspective of having a reticence to use Tysabri as a first line drug due to the risk of superinfections or the development of PML (of which I've seen several cases..even in JC negative patients), however, in the treatment of MS these days it is always a risk vs. benefits balancing act that must be taken into consideration. In this case, I would guess that your son's doctors have determined that there may be a more aggressive form of MS affecting your son and so for the purpose of trying to arrest or slow the demyelinating process down they have chosen to use Tysabri which many consider a more "powerful" or potent agent as compared to other oral or even injectable agents. I'm not sure that the data support this notion that any one agent we have available these days stands head and shoulders above any other, however, that is a consensus (even among specialists).
Therefore, the doctors may be of the belief that your son could BENEFIT from this medication and that the chance of such benefit outweights the risk. Typically speaking Tysabri doesn't really start to become overly risky in JC negative patients for at least 12 months and most of the data would actually push that number out to about 15-18 months before the risk of PML becomes real.
But it is a chance one takes and therefore, I think the comfort level of the patient needs to be taken into consideration when it comes to using this drug compared to others considered to be of much lower risk when it comes to PML. Of course, all MS drugs that are specific for modulating the disease have other risks that could be bad as well if they occur so they have to be taken into consideration.
If the level of risk is something that is that much of a concern then, I see no down side to at least speaking with the doctors about a plan of looking at an oral agent such as Gilenya and using it with a very specific list of criteria of symptoms and TIME to see if it really seems to be having an effect on relapse rates for your son as well as slowing down the progression of certain symptoms which you or he know to have been progressing at a certain pace to see if over time that symptom or disability seems to be slowing down in its decline.
When dealing with such situations and questioned by patients along these lines I always suggest a period of 2-3 years before deciding on making a switch to a different agent. Then, if after 2-3 years of using Gilenya or whatever other first line agent (other than Tysabri) there is a lack of the desired effect then, perhaps the question can be revisited as to whether or not Tysabri would be appropriate.
Remember, there is not drug to date that can claim a complete arrest or reversal of symptoms of MS. There is no drug to date that can cure this disease. Our best drugs slow progression and reduce amount of relapses. These 2 actions by immunomodulator drugs is very hard to either prove or disprove by normal bedside or clinical criteria.
Your comfort level as well as your son's play important roles in making decisions when using drugs which are potentially risky in their side effects such as Tysabri.
I can tell you that the amount of success overall that I've had in my MS patients with the minimum of highly or disastrous side effects such as PML would be in the use of Copaxone....or even using cocktails of Copaxone and Betaseron. I typically avoid Avonex anymore due to its very high incidence of bothersome flu like symptoms. I don't feel that Rebif has the same efficacy when it comes to relapse frequence as Copaxone but the literature would suggest that the rates are similar.
And so my BEST BEHAVING medication has been copaxone in conjunction with alternative drugs to improve gait such as AMPYRA (another somewhat controversial drug in terms of its efficacy...but I happen to have a number of patients who do well on it specifically for that purpose) and then, pulse steroids can also be added in for particularly stubborn cases of patients who wish to relapse more frequently than we'd like without overextending the risk for PML with ongoing use of something such as Tysabri.
I hope this addresses your concerns and that you will keep me in mind for future queries and questions regarding these or other neurological/medical issues.
I would appreciate your rating of this interaction with HIGH STARS if you FOUND the information helpful and would very much appreciate a few words of feedback.
Write to me at: bit.ly/drdariushsaghafi for additional comments, concerns, or to provide status updates.
This consult request has taken a total of 45 minutes of time to read, research, and envoy as a response to the patient.
Patient and family Comfort level with risks are important to consider
Detailed Answer:
Good afternoon.
I am in agreement with your perspective of having a reticence to use Tysabri as a first line drug due to the risk of superinfections or the development of PML (of which I've seen several cases..even in JC negative patients), however, in the treatment of MS these days it is always a risk vs. benefits balancing act that must be taken into consideration. In this case, I would guess that your son's doctors have determined that there may be a more aggressive form of MS affecting your son and so for the purpose of trying to arrest or slow the demyelinating process down they have chosen to use Tysabri which many consider a more "powerful" or potent agent as compared to other oral or even injectable agents. I'm not sure that the data support this notion that any one agent we have available these days stands head and shoulders above any other, however, that is a consensus (even among specialists).
Therefore, the doctors may be of the belief that your son could BENEFIT from this medication and that the chance of such benefit outweights the risk. Typically speaking Tysabri doesn't really start to become overly risky in JC negative patients for at least 12 months and most of the data would actually push that number out to about 15-18 months before the risk of PML becomes real.
But it is a chance one takes and therefore, I think the comfort level of the patient needs to be taken into consideration when it comes to using this drug compared to others considered to be of much lower risk when it comes to PML. Of course, all MS drugs that are specific for modulating the disease have other risks that could be bad as well if they occur so they have to be taken into consideration.
If the level of risk is something that is that much of a concern then, I see no down side to at least speaking with the doctors about a plan of looking at an oral agent such as Gilenya and using it with a very specific list of criteria of symptoms and TIME to see if it really seems to be having an effect on relapse rates for your son as well as slowing down the progression of certain symptoms which you or he know to have been progressing at a certain pace to see if over time that symptom or disability seems to be slowing down in its decline.
When dealing with such situations and questioned by patients along these lines I always suggest a period of 2-3 years before deciding on making a switch to a different agent. Then, if after 2-3 years of using Gilenya or whatever other first line agent (other than Tysabri) there is a lack of the desired effect then, perhaps the question can be revisited as to whether or not Tysabri would be appropriate.
Remember, there is not drug to date that can claim a complete arrest or reversal of symptoms of MS. There is no drug to date that can cure this disease. Our best drugs slow progression and reduce amount of relapses. These 2 actions by immunomodulator drugs is very hard to either prove or disprove by normal bedside or clinical criteria.
Your comfort level as well as your son's play important roles in making decisions when using drugs which are potentially risky in their side effects such as Tysabri.
I can tell you that the amount of success overall that I've had in my MS patients with the minimum of highly or disastrous side effects such as PML would be in the use of Copaxone....or even using cocktails of Copaxone and Betaseron. I typically avoid Avonex anymore due to its very high incidence of bothersome flu like symptoms. I don't feel that Rebif has the same efficacy when it comes to relapse frequence as Copaxone but the literature would suggest that the rates are similar.
And so my BEST BEHAVING medication has been copaxone in conjunction with alternative drugs to improve gait such as AMPYRA (another somewhat controversial drug in terms of its efficacy...but I happen to have a number of patients who do well on it specifically for that purpose) and then, pulse steroids can also be added in for particularly stubborn cases of patients who wish to relapse more frequently than we'd like without overextending the risk for PML with ongoing use of something such as Tysabri.
I hope this addresses your concerns and that you will keep me in mind for future queries and questions regarding these or other neurological/medical issues.
I would appreciate your rating of this interaction with HIGH STARS if you FOUND the information helpful and would very much appreciate a few words of feedback.
Write to me at: bit.ly/drdariushsaghafi for additional comments, concerns, or to provide status updates.
This consult request has taken a total of 45 minutes of time to read, research, and envoy as a response to the patient.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
I also forgot to mention that he is currently on 930mg [31 pillsof 35mg pills taken at one time] of prednisone for 5 days and from what I have read, he is even more at risk of PML when he is taking other immune deperessents. His wife and father are as concerned as I am with the use of Tysabri, along with this, he has two very young children to be concerned about.
Brief Answer:
Risk of PML/Risk of Aggressive MS Disability
Detailed Answer:
Thank you for the additional information. Once again, not having the same advantage as your son's doctors of knowing his overall physical and immune system status it is hard to conclusively comment on this topic except to continue to encourage to have XXXXXXX conversations with both your son and his doctors to determine whether or not using alternative agents is in your son's best interests. Tysabri is certainly NOT the drug of choice in all MS patients due to severity of onset as well as progression of disease as well as taking into account many other factors (such as JC virus status etc.).
Therefore, when TYSABRI is chosen in specific cases we must assume that the doctors in charge have done this with an eye toward the risk of PML which is much better understood (and respected) by the medical community since the advent of this drug and its relationship to PML.
It is considered to be one of the MOST EFFECTIVE (if not most effective) immunomodulator available in cases of aggressive MS.
I know several of my patients over the past 5 years who have chosen to stay on Tysabri due to its effects of keeping them more functional and preventing relapses of MS symptoms more than any other agent that they'd ever tried or read about taking.
Risk for PML becomes much more real and dangerous after the 18-24 block of infusions. At the same time the withdrawal of Tysabri in MS patients with an aggressive form of the disease becomes a risk itself to the vigorous march of worsening MS symptoms and relapses which themselves are described as the worst phases of MS that some individuals can ever face. Again, for this reason many patients choose to take the risks of PML and continue to take the infusions in order to avoid what they perceive as the WORSE alternative of disabilities that can prevent them from working, doing all the activities with their families they wish to do, and simply being able to take care of themselves without needing health aids and others to do basic functional needs or activities. Patients have said over and over in this setting that the risk of death to them is worth the time they may have "MS free" for the 24+ months that Tysabri may be able to confer upon them.
I'm sure you've read such testimonies.
Keep in mind that we are also gaining knowledge daily about ways to look for and mark the early entrance of JC conversions from negative to positive status and how to mitigate risks of suddenly discontinuing Tysabri vs. other ways of trying to return the patient to an immunocompetent status and still maintain some level of control on their MS so as not to throw them into a intolerable levels of relapses that could cause disabilities that could take months to never to recover from which would nearly overnight take away freedoms and capacities to function they had while on the medication. Staying abreast of the literature in this instance is the very best way to mitigate damage from these alternatives. Also, research is actively looking for the specific anti-viral medication that will go against the JC virus and it's only a matter of time before such an agent is found which will change the entire landscape of the risk of contracting PML which at present represents about a 20% mortality rate among MS patients who contract it as a direct consequence of MS treatments in the way of Tysabri +/- other immunosuppressive therapies.
Another way to look at that 20% mortality figure is to understand that 80% who contract PML do not die and can fend off the complications of the activated virus...but of course, at the cost of having to then, live with the symptoms of their MS or their relapses.
Unfortunately, there is no XXXXXXX answer to this dilemma and like so many decisions made in medicine ultimately, the decision to start and stay on this form of therapy for aggressive MS comes down to the patient's decision and thresh hold for taking risks. Ongoing discussions between yourselves, your son, and his doctors remains the best form of therapeutic decision making power in my opinion that anyone can do.
And so at the end of the way I believe my best advice is that of allowing the doctors in your son's case to guide you with their reasons and rationale for wanting the choose the Tysabri which they obviously feel is going to give him the best chance at fighting the MS in the form he has while also asking them to explain how their decision has taken into consideration your specific concerns regarding your family's history of immune dysfunction resulting in a high number of fatalities which you say were attributable to medication. Your concerns for avoiding a 4th under the circumstances of his being so young, married, with children are obviously well grounded. These discussions also must include your son's opinions and thoughts after he's had a chance to as well hear the doctor's point of view and why he feels Tysabri is the drug of choice.
I hope this addresses your concerns and that you will keep me in mind for future queries and questions regarding these or other neurological/medical issues.
I would appreciate your rating of this interaction with HIGH STARS if you found the information helpful and would very much appreciate a few words of feedback.
Write to me at: bit.ly/drdariushsaghafi for additional comments, concerns, or to provide status updates.
This consult request has taken a total of 103 minutes of time to read, research, and envoy as a response to the patient.
Risk of PML/Risk of Aggressive MS Disability
Detailed Answer:
Thank you for the additional information. Once again, not having the same advantage as your son's doctors of knowing his overall physical and immune system status it is hard to conclusively comment on this topic except to continue to encourage to have XXXXXXX conversations with both your son and his doctors to determine whether or not using alternative agents is in your son's best interests. Tysabri is certainly NOT the drug of choice in all MS patients due to severity of onset as well as progression of disease as well as taking into account many other factors (such as JC virus status etc.).
Therefore, when TYSABRI is chosen in specific cases we must assume that the doctors in charge have done this with an eye toward the risk of PML which is much better understood (and respected) by the medical community since the advent of this drug and its relationship to PML.
It is considered to be one of the MOST EFFECTIVE (if not most effective) immunomodulator available in cases of aggressive MS.
I know several of my patients over the past 5 years who have chosen to stay on Tysabri due to its effects of keeping them more functional and preventing relapses of MS symptoms more than any other agent that they'd ever tried or read about taking.
Risk for PML becomes much more real and dangerous after the 18-24 block of infusions. At the same time the withdrawal of Tysabri in MS patients with an aggressive form of the disease becomes a risk itself to the vigorous march of worsening MS symptoms and relapses which themselves are described as the worst phases of MS that some individuals can ever face. Again, for this reason many patients choose to take the risks of PML and continue to take the infusions in order to avoid what they perceive as the WORSE alternative of disabilities that can prevent them from working, doing all the activities with their families they wish to do, and simply being able to take care of themselves without needing health aids and others to do basic functional needs or activities. Patients have said over and over in this setting that the risk of death to them is worth the time they may have "MS free" for the 24+ months that Tysabri may be able to confer upon them.
I'm sure you've read such testimonies.
Keep in mind that we are also gaining knowledge daily about ways to look for and mark the early entrance of JC conversions from negative to positive status and how to mitigate risks of suddenly discontinuing Tysabri vs. other ways of trying to return the patient to an immunocompetent status and still maintain some level of control on their MS so as not to throw them into a intolerable levels of relapses that could cause disabilities that could take months to never to recover from which would nearly overnight take away freedoms and capacities to function they had while on the medication. Staying abreast of the literature in this instance is the very best way to mitigate damage from these alternatives. Also, research is actively looking for the specific anti-viral medication that will go against the JC virus and it's only a matter of time before such an agent is found which will change the entire landscape of the risk of contracting PML which at present represents about a 20% mortality rate among MS patients who contract it as a direct consequence of MS treatments in the way of Tysabri +/- other immunosuppressive therapies.
Another way to look at that 20% mortality figure is to understand that 80% who contract PML do not die and can fend off the complications of the activated virus...but of course, at the cost of having to then, live with the symptoms of their MS or their relapses.
Unfortunately, there is no XXXXXXX answer to this dilemma and like so many decisions made in medicine ultimately, the decision to start and stay on this form of therapy for aggressive MS comes down to the patient's decision and thresh hold for taking risks. Ongoing discussions between yourselves, your son, and his doctors remains the best form of therapeutic decision making power in my opinion that anyone can do.
And so at the end of the way I believe my best advice is that of allowing the doctors in your son's case to guide you with their reasons and rationale for wanting the choose the Tysabri which they obviously feel is going to give him the best chance at fighting the MS in the form he has while also asking them to explain how their decision has taken into consideration your specific concerns regarding your family's history of immune dysfunction resulting in a high number of fatalities which you say were attributable to medication. Your concerns for avoiding a 4th under the circumstances of his being so young, married, with children are obviously well grounded. These discussions also must include your son's opinions and thoughts after he's had a chance to as well hear the doctor's point of view and why he feels Tysabri is the drug of choice.
I hope this addresses your concerns and that you will keep me in mind for future queries and questions regarding these or other neurological/medical issues.
I would appreciate your rating of this interaction with HIGH STARS if you found the information helpful and would very much appreciate a few words of feedback.
Write to me at: bit.ly/drdariushsaghafi for additional comments, concerns, or to provide status updates.
This consult request has taken a total of 103 minutes of time to read, research, and envoy as a response to the patient.
Note: For further follow up on related General & Family Physician Click here.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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