neurologist phone call

Hello to you all and I hope you are doing well.

The neurologist rang today to discuss my recent brain/spine mri. He said there are no new lesions on the brain but a few new lesions on the spine.

We had discussed the progression of my ms at my appointment with him in August and that was why the mri was booked.

I am currently on copaxone, but the doctor today said he thinks I should begin tryabri? Think thats how it is spelt. Once a month infusion at hospital. He said it was ok for me to take as I had breast cancer a few years ago and still on tamoxifen and this would not affect this.

I would really love to hear of anyones else experience. Thanks a million

Mary

Hello Mary

It does sound like you need to move to the next level of disease modifying drug as you’ve got new lesions.

Tysabri is an excellent drug. There are risks to it, as with any drug, but IMO, the benefits outweigh the risks. Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid for more information about the various DMDs.

Tysabri is estimated to reduce relapses by about 70% as opposed to the 30% average with Copaxone. Having an infusion once per month should make things easier rather than having a daily (or 3 times weekly) injection. The risks from Tysabri are well known and you are checked regularly to make sure you aren’t affected.

The worst risk from Tysabri is a rare brain virus known as PML. Before you start Tysabri your blood is tested to see if you are potentially at risk (to get PML you have to have encountered a symptomless virus called John Cunningham virus - or JCV). Even if you are positive for JCV, there are degrees of risk. In any case, even a JCV positive person can definitely take Tysabri for 2 years without being at risk.

Other than that, there are other side effects that some people encounter, similar to many drugs. In my case, I have a slightly dodgy liver, so my liver enzymes were raised dangerously high. It was a big disappointment that I had to come off Tysabri as a result. I still think it’s a great DMD and would take it like a shot in your position.

Talk it through with your MS nurse. That should allay any worries you have about the drug, Best of luck.

Sue

Very well explained Sue…things I didnt fully know with never having been on any DMD.

Thankyou.

Boudsx

Thank you so much,you always know the right things to say guys