Hi
I am just looking for some opinions to try and make a decision and would value some opinion on this.
I have been taking Tysabri for my MS for the past 3 years which has kept me relapse free for the most of it apart from the odd hiccup here and there.
When I started I knew the risk of getting PML was 50/50 as I didn’t know if I had the JC gene which carries this infection. Last year they developed the test for this and I was very happy when it turned out I was negative for the gene and so could not get PML.
Last week I got news that my latest test results were positive for the gene and so they have given me the decision on what happens next. Basically I have two choices, come off the meds or stay on it.
If I come off it, my MS will return, the last time they tried to take me off it I had a major relapse and was put straight back on it as it didn’t work, they would try me on fingolimod but it’s not as good as Tysabri so might or might not work, if it doesn’t work I would not be allowed back on Tysabri as the risk of PML would be even greater. I would start back with MS as though it had been muted but still active so where I should have been 3 years on I would start as that level. There is a new drug BG12 coming out next year but again it’s not as strong as Tysabri so again may or may not work.
If I stayed on it, every time I get this drug I would have a 1/385 chance of getting PML, but also if I stay on the drug I would be exactly as I am now, healthy and active and anything less than this I wouldn’t be happy with.
If I came off it, I could not cope with being a burden and would hate the thought of relying on people long term. Don’t get me wrong I ask for help during a relapse if I need it but this could be needing help forever.
This is a really difficult decision for me
Has the neurologist said what he/she thinks you should do? If not, in your shoes I would be asking the neurologist for a clear steer: i.e. what in his/her professional judgement, was the best treatment option for me now.
That won’t give you your answer; you still have the final decision to make. But it is an important piece of the jigsaw, and gives you a default option, at least. If you know they would prefer you to stay on Tysabri (or come off it), that could make it easier to think about your options, i.e. whether you want to follow their advice, or not. Clearly, they do not have cast-iron views, or you would already know what they were. But they owe you a recommendation. That’s what they’re paid for.
It’s a tough one, as you say. I’m not in that boat at the moment, but I really do feel for you.
For what it’s worth, I think I would want to stay on (it is doing a good job for me as well) and I am very frightened of what MS was doing to me. But that’s thinking about it in theory - a very different matter from facing that decision for real, as you now are.
Good luck with whatever you decide.
Alison
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I think its really a RISK-BENEFIT thing… is the minor risk of PML, so bad to you, that you want to lose the benefit of Tysabri… All personal choice really… I know there are a lot of people Tysabri has helped amazingly, and JC virus or not will keep having it as long as humanly possible… others come off after 2 infusions just too scared to keep risking it.
Im also on Tysabri (JC pos) but have only just started!
Have dug out some interesting probabilities to help you put it in perspective…
After 2 Years on Tysabri - JC Positive - No prior Immuno suppression - 1 in 217 chance of PML
Risk of dying from Heart disease 1 in 6
Risk of dying in Motor vehicle incidents 1 in 98
Risk of dying from Intentional self-harm 1 in 109
Risk of dying by Unintentional poisoning by and exposure to noxious substances 1 in 126
Risk of dying by Falling 1 in 163
Chance of Having twins! 1 in 32
Getting on a plane with a drunk pilot 1 in 117
Chance of Dating a millionaire - 1 in 215!!
0 - 2 Yrs on Tysabri - JC Positive - No prior IS - 1 in 1786 chance of PML
Chance of Finding out your child is a genius - 1 in 250
Chance of Having IDENTICAL twins
Risk of death by Assault by firearm 1 in 321
Risk of death in a Car 1 in 368
Risk of death as Pedestrian 1 in 701
Risk of death as Motorcycle rider 1 in 761
Risk of death by Accidental drowning and submersion 1 in 1,103
Hi, my neuro is away on holiday! but before he went he left my MS Nurse the task of telling me that I was positive… nice and she said he wouldn’t tell me to come off a drug that has been clearly working for me but just needs to know that I’m aware of the risk if I stay on it. I have an appointment with him when he gets back on the 29th but I was due my tysabri on the 24th so they’re going to be looking for a decision before I speak to him.
I was kinda swaying more to the coming off but more and more people have said to me the same as you guys so thank you again for your input its another perspective on the situation and I’m now swaying more on the staying on it, I just hope I don’t regret it, although I don’t have any kids of my own I have 3 gorgeous niece and nephews I would hate to leave without seeing them grow up.
I am not in a position to comment as non of this applies to me,however my rule of thumb in decision making is…
Find out as you are all the relevant info,I then always get a gut reaction as to which way I’m swinging. Then ask yourself is my choice the best I can make given all the variables? Can I live with the fact I made the best choice possible at that time and it was right for me.
We all make choices that sometimes don’t have the desired result,but if you cant control the variables,you can’t blame yourself .What you did was for all the right reasons and wasn’t made lightly.
I wish you well whatever you decide.
Pip
It does sound as if they think you’re best staying on, doesn’t it?
Rather than feel you are being bounced into a decision, you could perhaps just do business-as-usual (i.e. have your Tysabri on 24th) and then have your chat with the consultant as planned about what you do thereafter? Would that give you a bit more space to decide?
Being human, we all dread making the wrong choice (the implication being that the consequences will somehow be our ‘fault’). But that’s nonsense, when you think about it. We don’t have any choice about having MS, do we? The only thing we can exercise some choice over is whether or not to accept the risks of medication to counter the clear and present threat of MS. Some bloody choice! I think the thing to remember here is that none of this is our fault.
Alison
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