I have rung the Florence clinic and, later today, I will be getting information on how to get onto their HSCT programme.
When I rang the doctor in charge answered the phone, so I was able to ask him how long you have to stop taking Tysabri for, before you can have HSCT. He told me I would have to be off it for six months and that I should go on Cyclophosphamide for those six months, to stop rebound relapses. That sounds like a horrible drug, but not so horrible as the HSCT.
If there is a cure out there, I have to try it. I only have to be a little worse than I am now for my life to be to hard for me. I could be well after having this, couldnât I?
krakowian wrote:
âWill I as someone with m.s. have a 67% reduction in relapse rate if i take Tysabri - what is a relapse rate - what does 67% reduction mean? 67% of what?â
pob has already answered you on what the relapse rate means.
As for the numbers, if your questions are serious then lets try some more basic statistical projection:
If you have RRMS, and you have had enough relapses to provide the data for a relapse rate calculation, and you then start taking Tysabri, and you are an average responder to Tysabri, then there is a 0.67 possibility that you will experience a reduction in the number of relapses in the order of 0.67.
Where do the numbers come from? Essentially from Phase I, II, and III trials.
These start by determining safe dosages and side effects, then look at whether the medication will actually deliver the expected results, and then at the general safety and a comparison with existing treatments so that a cost effectiveness figure can be calculated. No-one in this whole wide world would fund a drug that (say) would only reduce relapses by 10% but cost 90% as much as the existing medication.
As for your statement:
âPowerful drugs with equally powerful side effects are being prescribed to pwms without empirical evidence that they will help that individual.â
can you justify this with actual examples?
krakowian wrote:
âWill I as someone with m.s. have a 67% reduction in relapse rate if i take Tysabri - what is a relapse rate - what does 67% reduction mean? 67% of what?â
pob has already answered you on what the relapse rate means.
As for the numbers, if your questions are serious then lets try some more basic statistical projection:
If you have RRMS, and you have had enough relapses to provide the data for a relapse rate calculation, and you then start taking Tysabri, and you are an average responder to Tysabri, then there is a 0.67 possibility that you will experience a reduction in the number of relapses in the order of 0.67.
Where do the numbers come from? Essentially from Phase I, II, and III trials.
These start by determining safe dosages and side effects, then look at whether the medication will actually deliver the expected results, and then at the general safety and a comparison with existing treatments so that a cost effectiveness figure can be calculated. No-one in this whole wide world would fund a drug that (say) would only reduce relapses by 10% but cost 90% as much as the existing medication.
As for your statement:
âPowerful drugs with equally powerful side effects are being prescribed to pwms without empirical evidence that they will help that individual.â
can you justify this with actual examples,
yes, a close relative who has m.s. and who now has very rare cancer due to him taking a DMD. Well-documented that there was a higher incidence of cancer amongst those who took this drug.
to those who ask if it can be proved conclusively that the DMD cause the cancer Iâd say that itâs as conclusive as saying that Tysabri reduces the number of relapses an individual may have.
In other words you have NO evidence,
You do not care to name the DMD that you say caused your relative to contract cancer.
You have no evidence that this un-named DMD was the cause of the cancer.
You offer no evidence that this un-named DMD was the cause of any cancer.
In contrast, this (for example):
does offer good evidence that Tysabri does reduce the number of relapses.
The potential side effects of Tysabri can be determined right here on the Societyâs website:
including one that is rare but potentially lethal for some people. Of course, with foreknowledge, even that small risk can be minimised or avoided.
It only takes a few keystrokes to look up the side effects of any medication - and many of us do this, as well as read the information sheet that is enclosed with any medication, before taking any of it. I have just turned down two drugs that were proposed for me, on the basis of their known side effects, and negotiated an alternative that does not have those side effects (and my GP was quite happy to prescribe it).
For me personally speaking, and via the limited research Iâve done on it, I just donât think itâs worthwhile at this point in time. Again, that is for me personally. If I had progressive MS or if I was severely disabled, then I might reconsider.
The problem for all of us now is that we have MS at a transition time. 10 years ago, there werenât the DMDs available that there are today. In 10 years time, who knows what might be available?
HSCT is, to me, a very severe way of treating an illness. Itâs the equivalent of having a lung transplant to cure bronchitis.
And I donât mean to belittle MS in that analogy - I just mean to draw attention to the fact that to destroy your entire immune response in order to rid yourself of MS is the same as replacing a faulty organ because we donât currently have the medication to treat the problem associated with it.
Iâm hopeful that there will in time be, perhaps not a cure, but a way in which to halt the progression of MS and perhaps even repair some of the damage that itâs already done to our body. Work is well underway to find a drug to help remyelination. This is truly the Holy Grail of MS research. One day, it may well be possible to have a wheelchaired MS sufferer walk again.
I am 6.5 on the EDSS. I have got steadily worse over the last seven years, but particularly over the last two years (while Iâve been on Tysabri). If I carry on like this, in a few years I will be in a wheelchair and unable to self-transfer. I am already struggling to live my life as I want to live it - I can only walk a few yards, I can no longer cook or do many other things that are important to me. For me it is not true that HSCT is " the equivalent of having a lung transplant to cure bronchitis." For me itâs like a lung transplant for severe, life-limiting emphysema.
As someone (Blossom?) said on here, MS is the snowflake disease - no two cases are the same. Each of us has to make our own choices about whether to have any treatment and which of the possible treatments to try. Tysabri is not doing it for me. If (and itâs a big if) I have a chance to be cured by HSCT, then I plan to grab it with both hands.
It seems the Professor of Neurology at Barts & London is taking HSCT as a treatment option seriously, but obviously dependant on the results of a full trial.
As I did say and repeat: I didnât mean to belittle MS suffererâs plight. And I also stated that if I were in a case of severe disability ânowâ then I would obviously reconsider all options open to me.
But for the cases where it is not as severe, the analogy does stand.
Iâm still hopeful that there will be a breakthrough into MS in the near future. We have had such advances over recent times and I think itâs only going in one direction.
Iâm sorry if you felt I was demeaning your pain, SC. I would also consider everything open to me if I were in your position. I do hope that something can help us all soon; especially for those with more severe disabilities.
Bad news about this for those of us who were hoping HSCT would stop progression rather than relapses, Iâm afraid.
My husband talked to Dr Paolo Muraro, who is doing work on this at Imperial. From what I can understand, HSCT shows very good results on stopping the inflammatory part of the disease. It is excellent for young people with aggressive MS, recently diagnosed. They are the ones who have 80 to 90% chance of being cured by HSCT. It does not produce the same results for people who are older, who have been diagnosed for years and have accumulated disability.
I fit into this second category, so my hopes on this are dashed.