Aa
Meds and PML risk
My neurologist tested me for JCV and I was positive. She said I could still do Tysabri for a couple of years. I declined. Then she wanted me to do Tecfidera. There have been at least 5 cases of PML in patients treated for psoriasis with Tecfidera (different brand name, same generic drug though). Now there has been a case of PML in the US in an MS patient being treated with Tecfidera. My doctor talks to me like I'm an idiot because I'm just not real excited about doing one of the drugs even though I'm JCV +. She said my disease is very active, which I'm well aware of -- I'm living in this body, not her. But one of these drugs will, at best, postpone the inevitable, and they might kill or maim me as bad or worse than the MS, and the risk is not for something that is going to cure me. She has no idea how scared I am with either decision and how much I wish there was something I could try without potentially devastating side effects. I don't know why the doctor gave me the info on the drugs for me to read about the risks and then "decide" whether I was willing to take the risk, only to talk down to me when I decide the risk is not something I'm comfortable with. I've recently moved and had to find a new MS doc and I've only seen this one once. The other specialists didn't pressure me and respected my decisions without putting more stress on me. She has made me feel more doomed than I already felt, and without feeling like I have the comfort of having a doctor who is there to support me, whatever my personal decision. Am I seeing this all wrong?
Hi TB-
I agree with ess amd others who have chosen to be proactive about treating their MS.
I was dX'd 3 years ago. My initial dx was SPMS and I was deemed out of the reach of first line CRAB's. I tested JCV- and immediately started Tysabri. After 20 months I converted to JCV + and it was simultaneously determined that Tysabri was no longer working.
I switched to Rituxan and after two rounds of infusions I am alive and well. There are risks associated with all meds. There is risk associated with walking out the door in the morning. Only you can decide if you are willing to accept thise risks.
I choose to accept them. If you were to see me on the street you would never guess there was anything wrong with me, let alone that I have SPMS. I plan to continue doing everything and anything I can to keep mit that way -)
Kyle
I agree with ess amd others who have chosen to be proactive about treating their MS.
I was dX'd 3 years ago. My initial dx was SPMS and I was deemed out of the reach of first line CRAB's. I tested JCV- and immediately started Tysabri. After 20 months I converted to JCV + and it was simultaneously determined that Tysabri was no longer working.
I switched to Rituxan and after two rounds of infusions I am alive and well. There are risks associated with all meds. There is risk associated with walking out the door in the morning. Only you can decide if you are willing to accept thise risks.
I choose to accept them. If you were to see me on the street you would never guess there was anything wrong with me, let alone that I have SPMS. I plan to continue doing everything and anything I can to keep mit that way -)
Kyle
Let me second Laura's post. I come HERE for needed infusions of sanity when I either read too much negative stuff, or my own imagination runs away with me.
I have JUST started Tecfidera, and I too am a bit creeped out by the tales of PML, (and I was not tested for JC, but I guess they aren't doing that just yet with Tec.)but I will be insisting (if necessary) that I be monitored to MY satisfaction, and will switch to something else if it doesn't work, or my numbers go too low, or if I just am no longer comfortable with how close I am to a limit. I don't want to die from PML, but having bits of my life taken away by this disease, when I can choose to try NOT to, is pretty darn important, and worth some risk. The alternative is just roulette.
Anyway, thank all of you great people here for the time to post the info about Tec. I'd read it before, but having one of you guys reiterate it somehow makes me feel easier, you know?
I have JUST started Tecfidera, and I too am a bit creeped out by the tales of PML, (and I was not tested for JC, but I guess they aren't doing that just yet with Tec.)but I will be insisting (if necessary) that I be monitored to MY satisfaction, and will switch to something else if it doesn't work, or my numbers go too low, or if I just am no longer comfortable with how close I am to a limit. I don't want to die from PML, but having bits of my life taken away by this disease, when I can choose to try NOT to, is pretty darn important, and worth some risk. The alternative is just roulette.
Anyway, thank all of you great people here for the time to post the info about Tec. I'd read it before, but having one of you guys reiterate it somehow makes me feel easier, you know?
Ess, sarah and Alex - you three continue to be so wise about MS and treatment - thnaks for being here to support people like tiredBunny with straight answers and a lot of common sense.
TB - I hope you have come back and read the answer that Ess took the time to put together. She is very wise and has shared some great information and ideas with you.
-Laura
TB - I hope you have come back and read the answer that Ess took the time to put together. She is very wise and has shared some great information and ideas with you.
-Laura
Please do not take this as a lecture or anything like that, just thoughts from someone who's had MS since around 1981 but was not diagnosed until 2011, because of bad medical advice. Just food for thought.
Just remember, that whatever you choose to do, there is NO CURE for MS. Period. As Ess pointed out, you have to be proactive, I, for example, would probably not be wearing a brace or dark glasses if the 3rd idiot neuro had put me on anything that would lessen future action.
The neuro that I have now, immediately put me on Tysabri, as my first drug, and he monitors me regularly. My JC levels have not increased in the 3 years I have been on it, they are very low, and I've had no new permanent flares or damage. You will, most likely, have some of the pesky little things we all deal with that come and go. I think of them as MS I've placed in a box, but occasionally reminding me its still there by throwing a mini tantrum.
MS meds are kinda like insurance umbrellas, they are there to help protect you, but no guarantee. None will reverse any permanent issues you've developed or will develop, and if you take nothing, its like going to a slot machine and playing with your eyes closed. You get what your MS gives you.
It is a hard decision, yes, and I read all of the literature, went to the actual sites, and listened to my neuro, whose mother died from MS complications, and he's really up on all of the treatments and he said he'd give his wife or daughters Tysabri in a heart beat.
It is ultimately up to you, but as someone who lives with 2 permanent problems, from MS, I urge you to pick one of them. You can always change later if you are not happy with what you are taking.
Sarah
Just remember, that whatever you choose to do, there is NO CURE for MS. Period. As Ess pointed out, you have to be proactive, I, for example, would probably not be wearing a brace or dark glasses if the 3rd idiot neuro had put me on anything that would lessen future action.
The neuro that I have now, immediately put me on Tysabri, as my first drug, and he monitors me regularly. My JC levels have not increased in the 3 years I have been on it, they are very low, and I've had no new permanent flares or damage. You will, most likely, have some of the pesky little things we all deal with that come and go. I think of them as MS I've placed in a box, but occasionally reminding me its still there by throwing a mini tantrum.
MS meds are kinda like insurance umbrellas, they are there to help protect you, but no guarantee. None will reverse any permanent issues you've developed or will develop, and if you take nothing, its like going to a slot machine and playing with your eyes closed. You get what your MS gives you.
It is a hard decision, yes, and I read all of the literature, went to the actual sites, and listened to my neuro, whose mother died from MS complications, and he's really up on all of the treatments and he said he'd give his wife or daughters Tysabri in a heart beat.
It is ultimately up to you, but as someone who lives with 2 permanent problems, from MS, I urge you to pick one of them. You can always change later if you are not happy with what you are taking.
Sarah
Everything is risk/benefit. If you are not comfortable taking that risk there are other drugs such and Gilenya. Rituxan is good drug but it has PML too. The doctors monitor people closely but you are in charge.
Alex
Alex
I've been JC+ since BEFORE I started Tysabri. I've been on it 3 years and will continue until my levels reach a danger point. Tysabri has done a wonderful job and my neuro says my MS is now stable, I've had no relapses in a year.
ess has given you some good advice, everything has a side effect. Call Tysabri and talk with them, they are wonderful people and very supportive.
ess has given you some good advice, everything has a side effect. Call Tysabri and talk with them, they are wonderful people and very supportive.
Hi there. I could go into lots of detail here, but instead I'll make it as brief as I can, which still is not likely to be truly brief.
First, you have the right to treat or not treat your MS as you see fit. In making such decisions, I hope you will read all the relevant literature and reports of scientific studies about the various drugs and treatments, thus getting your information from reliable, factual sources and not web sites of questionable accuracy or purpose.
It goes without saying, yet needs to be repeated constantly nonetheless, that every drug, not just those for MS, carries an aspect of risk. Heck, every medical treatment does as well, so even if we simply have blood drawn for some test, that has an extremely minimal risk of complications. We take that risk because the payoff, or positive side, is likely to be very much worth it. All of life is risky and nothing is guaranteed. So the issue becomes one of informed consent.
Every MS drug has its downside, even if it's just having to remember to take it or administer it. The older injectables have side effects for most people. These can generally be minimized to make them tolerable. The new oral meds also have side effect profiles. Pills are a lot easier than shots, but some patients must try more than one to find one they can tolerate. Finally there are the infusable treatments, and they too can be problematic. Their action can compromise the immune system, leaving the patient more open, relatively speaking, to infections.
So why take any of these? Because they work! Not a hundred percent, and each drug will not work equally for each patient, but in the aggregate they work. Read the studies. Patients on these treatments, taken statistically, have significantly fewer relapses and less disability than those who are not. Far fewer people are winding up in wheelchairs than formerly, and far more are able to lead long and relatively normal lives.
In the case of Tysabri, yes, the risk of PML is there if one is JC positive. Those who start out negative are monitored regularly, and if negative turns to positive, then a decision must be made between doctor and patient. Some continue on Tysabri regardless. I know quite a few on Tysabri who are doing extremely well, with few or no relapses since starting the treatment. Having a livable life is worth it to them, because earlier drugs did not work. Tysabri is almost never a first-line treatment, and often is used for patients whose disease is at the secondary progressive phase. No other treatments have been identified for this group, except alternative, generally stronger, infusion drugs that in their milder way act much as chemotherapy does. Yes, risk is involved.
As for Tecfidera, I feel you are taking reported data out of context. If you read reports on this drug's cousin, not exactly the same drug, and psoriasis, you will find that in nearly every case of PML there are other circumstances to consider, such as other health issues these patients experienced and other drugs they were taking.
There has been one reported case of PML for Tecfidera itself. That person had been on the drug for several years, in the trial stage and later prescribed. During that time her white blood count got dangerously low, leaving her open to infection. I think it's outrageous that she was not taken off the drug as soon as this happened, since she was consistently monitored, but she wasn't. Law suit territory, in my view.
Anyone on Tecfidera needs periodic blood monitoring, which most neuros consider mandatory. Any responsible doctor will discontinue the drug immediately should the white count get past the acceptable point. That in itself will negate the possibility of PML, making Tec not a dangerous drug for the vast majority.
For myself, I choose to be proactive in treating my MS. I don't want to go blind, lose my cognitive functioning or become severely disabled, all of which can happen with MS. Treatment is no guarantee of anything, but the odds in my favor increase significantly because of my decision. I don't want to have to kick myself around the block later on because I decided the risks or drawbacks exceeded the rewards. They almost never do.
Finally, just a couple of comments. Taking Tec does not expose you to PML, even if you're JC positive, providing your white count stays in the good range. As I said, easy to monitor. Also, the MS drugs do not have 'devastating' side effects, and I wouldn't want anyone reading this to get that impression. They do not 'postpone the inevitable' and you are not 'doomed.' I believe your ideas about MS prognosis are very much skewed in the negative direction, which is not consistent with reality.
ess
First, you have the right to treat or not treat your MS as you see fit. In making such decisions, I hope you will read all the relevant literature and reports of scientific studies about the various drugs and treatments, thus getting your information from reliable, factual sources and not web sites of questionable accuracy or purpose.
It goes without saying, yet needs to be repeated constantly nonetheless, that every drug, not just those for MS, carries an aspect of risk. Heck, every medical treatment does as well, so even if we simply have blood drawn for some test, that has an extremely minimal risk of complications. We take that risk because the payoff, or positive side, is likely to be very much worth it. All of life is risky and nothing is guaranteed. So the issue becomes one of informed consent.
Every MS drug has its downside, even if it's just having to remember to take it or administer it. The older injectables have side effects for most people. These can generally be minimized to make them tolerable. The new oral meds also have side effect profiles. Pills are a lot easier than shots, but some patients must try more than one to find one they can tolerate. Finally there are the infusable treatments, and they too can be problematic. Their action can compromise the immune system, leaving the patient more open, relatively speaking, to infections.
So why take any of these? Because they work! Not a hundred percent, and each drug will not work equally for each patient, but in the aggregate they work. Read the studies. Patients on these treatments, taken statistically, have significantly fewer relapses and less disability than those who are not. Far fewer people are winding up in wheelchairs than formerly, and far more are able to lead long and relatively normal lives.
In the case of Tysabri, yes, the risk of PML is there if one is JC positive. Those who start out negative are monitored regularly, and if negative turns to positive, then a decision must be made between doctor and patient. Some continue on Tysabri regardless. I know quite a few on Tysabri who are doing extremely well, with few or no relapses since starting the treatment. Having a livable life is worth it to them, because earlier drugs did not work. Tysabri is almost never a first-line treatment, and often is used for patients whose disease is at the secondary progressive phase. No other treatments have been identified for this group, except alternative, generally stronger, infusion drugs that in their milder way act much as chemotherapy does. Yes, risk is involved.
As for Tecfidera, I feel you are taking reported data out of context. If you read reports on this drug's cousin, not exactly the same drug, and psoriasis, you will find that in nearly every case of PML there are other circumstances to consider, such as other health issues these patients experienced and other drugs they were taking.
There has been one reported case of PML for Tecfidera itself. That person had been on the drug for several years, in the trial stage and later prescribed. During that time her white blood count got dangerously low, leaving her open to infection. I think it's outrageous that she was not taken off the drug as soon as this happened, since she was consistently monitored, but she wasn't. Law suit territory, in my view.
Anyone on Tecfidera needs periodic blood monitoring, which most neuros consider mandatory. Any responsible doctor will discontinue the drug immediately should the white count get past the acceptable point. That in itself will negate the possibility of PML, making Tec not a dangerous drug for the vast majority.
For myself, I choose to be proactive in treating my MS. I don't want to go blind, lose my cognitive functioning or become severely disabled, all of which can happen with MS. Treatment is no guarantee of anything, but the odds in my favor increase significantly because of my decision. I don't want to have to kick myself around the block later on because I decided the risks or drawbacks exceeded the rewards. They almost never do.
Finally, just a couple of comments. Taking Tec does not expose you to PML, even if you're JC positive, providing your white count stays in the good range. As I said, easy to monitor. Also, the MS drugs do not have 'devastating' side effects, and I wouldn't want anyone reading this to get that impression. They do not 'postpone the inevitable' and you are not 'doomed.' I believe your ideas about MS prognosis are very much skewed in the negative direction, which is not consistent with reality.
ess
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