Hi everyone,
I had been on a merry little ship called Tysabri for about five and half years, I knew I was JC positive, but I thought the benefits of Tysabri far outweighed the likelihood of contracting PML.
Back late last year I was told there was a new test to see how much of the JC Virus was showing in your system and I opted to go for it and see what happens. I had a standard letter just before Christmas saying you have the JC Virus but contracting PML is a 1 in 200 chance blah de blah. So I thought I’d carry on regardless. In January my MS Nurse then decided to change the goal posts and said that in fact I have a high level of the JC Virus in my system and I have got to stop taking my beautiful miracle drug as soon as possible. That was that. Just a phone call.
It is now almost May - I’ve had one pamphlet on another drug that offers the same problem of contracting PML - that’s it. I’d got freaked out by that phone call, which then led to upsetting my whole family. It was like being diagnosed all over again, my very merry little ship of Tysabri has now sunk. I am not on any DMD’s and I am feeling the pinch. I feel like i have been put on a shelf marked ‘Mmmm not sure what to do with now’ and left to stew.
Anyone else out there had any similar experience? I’d really love to hear from you.
Lorraine x
Aw Lorraine
That’s crap. What a shame you’ve had to stop Tysabri.
I’m not in exactly the same position as you, but not currently on a DMD either.
Tysabri gave me raised liver enzymes so I had to stop taking it. Then Tecfidera (which I presume is the other drug you can’t take because of your JCV status) gave me depleted lymphocytes so I had to stop that too. I’ve already had bad side effects from Avonex and failed on copaxone (ie started relapsing again). Given my history, and the fact that I’m now very disabled and have had MS for 19 years, I don’t think another DMD is a possibility for me, but you are in a different position I’m sure.
You should get on another DMD even one that’s got a worse relapse reduction rate, like a beta interferon or copaxone. Have you already tried them? What about Gilenya? Is that a possibility? Or one of the super drugs if you can bear the risk (Lemtrada, HSCT or Cladribine.
Have you got an MS nurse? If so, get onto her/him and see what’s available to you. Otherwise, have you an appointment set to see your neurologist? If not, get on to his/her secretary and get one sorted out. You shouldn’t be left adrift with no raft at all, even if it’s something that isn’t as good as Tysabri is better than nothing.
Hopefully you’ll be able to get something sorted out.
Sue
The Barts Blog are always warning about the dangers of rebound effect when coming off Tysabri and like to get people on Gilenya as soon as possible. I think you need to discuss treatment options with your Neuro and get things sorted out.
http://multiple-sclerosis-research.blogspot.com/2015/09/clinicspeak-is-rebound-activity-post.html
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I was found to be very high risk for PML and came of Tysabri about 1 year ago, I was worried about rebound but they were very efficient and I was put on Fingolimod about 5 weeks later. Due to low lymphocytes I had to stop in Sept last year, after my lymphocytes came back up (very slowly) I tried the Fingolimod again at the beginning of this year but after just 1 month my lymphocytes had plummeted again so I had to stop. I have now been told that I can have Tecifedera or go back on Tysabri again once my lymphocytes have reached acceptable levels - I am going to opt for Tysabri as I was really stable on that and have got worse since stopping it though I haven’t had a relapse. They have said I will be monitored closely with MRI scans 3 or 4 times a year.
I really think you should contact your nurse or neuro and remind them you are there and waiting them to let you know what happens next - they shouldn’t leave you so long with no DMD
Chris
Crumbs, I’m dismayed by this - poor you. No wonder if you feel as though you have been slung out of your First Class carriage without warning and abandoned on the station platform - I would feel the same. I agree with other replies that you should making a bit of a fuss to get yourself started promptly on an alternative DMD. It seems to me indefensible that they have left you without a clear plan in place.
Alison
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Absolutely ask for an action plan and asap. You’re at risk of relapsing. I’m dismayed to hear you have been left the way you have. Its not acceptable so don’t accept it!
Thank you all for your replies, I shall indeed act upon them. I have made the decision to get in touch with my neurologist, and hopefully get myself onto some sort of DMD’s.
Your replies have given me some hope - depression is a big part of my life - light at the end of the tunnel and all that. Thank you. Someone listening to my moans has really given me a boost.
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