Wednesday, 19 July 2017

another round of DMT pick n mix

genuinely helpful diagram that the brilliant MS Nurse drew for us yesterday
Yesterday I went to see the team at the QMC for a follow-up from the recent MOAR (Mother Of All Relapses) and things have certainly changed in the realm of Disease Modifying Therapies.

Most noticeably there seems to be a "failure will not be tolerated" attitude to treatments. Which is why after my first relapse in 5 years (and first in the almost 2 years since I started taking Tecfidera), the Neurologist and MS Nurses are keen to discuss changing medication, and a step-up from First Line treatments to more aggressively effective Second Line options.

So we're now back in the realm of weighing up drugs (or, more likely, sticking a wet finger in the air to see which way the wind blows) - the key contenders are:

Finngolimod (aka Gilenya) - one pill a day but the promised reduction in relapse rate means there's not a huge amount to choose between this and Tecfidera - it's still classed as First Line, and - like I've said - the various teams would like to see a move to something a bit more effective.

Tysabri (aka Natalizumab) - an intravenous infusion once every four weeks. The MS Nurse described this as acting like velcro on the immune cells in the blood stream, preventing them from passing through blood vessel walls and into the central nervous system where nerve damage occurs.

As it says in the MS Trust publication on Disease Modifying Drugs (links opens as a PDF):
Tysabri is a highly effective (category 2.0) DMD; it reduces the number of relapses by about two thirds (70%).
Sounds great, yeah? But hang on...
Treatment with Tysabri may increase the risk of progressive multifocal leukoencephalopathy (PML), an uncommon brain infection that can lead to severe disability or even death. PML is caused by a mutation of the JC virus, a common infection completely unrelated to MS. 
So there's that...

And finally Alemtuzumab (aka Lemtrada aka Campath) - taken as two five-day intravenous infusions, 12 months apart. Again, this is a highly effective category 2 DMD, reducing the number of relapses by around 70%.

Because Alemtuzumab suppresses the immune system, people are more vulnerable to infections, and there's the usual headaches and nausea. But surely that's not all, right?
Three serious side effects have been reported from clinical trials:
  • overactive or underactive thyroid gland leading to thyroid disorders, affecting 360 in 1000 people
  • 
idiopathic thrombocytopenic purpura (ITP), a serious disorder which prevents blood from clotting, affecting 10 in 1000 people 
  • 
kidney problems, affecting 3 in 1000 people 
These side effects are potentially serious but they are treatable if caught early enough. People taking Lemtrada will be informed of the early signs and symptoms of these side effects. 

When I was talking to the MS Nurse, she implied that Alemtuzumab had more risks associated with it (certainly more than the MS Trust publication implies), mostly because of how intense it is, effectively wiping out lymphocytes - more reading will have to be done.

So this is where we are! Next week I'm going back to the QMC for a blood test to see if I have the JC Virus and am therefore more or less likely to develop PML.

On first glance, I was leaning more towards Tysabri but now I'm not so sure.

3 comments:

swisslet said...

Jesus. What a set of choices. I really feel for you brother. Just try to remember that there's probably no wrong choice. Or equally, no right choice.
*sigh*

stevedomino said...

I know what you're saying, they do all sound pretty crappy. But at least there IS a choice.

Talking to Kate (lovely MS Nurse), when people are first diagnosed these days they get put straight onto a DMT and it's often one of these. Times have changed - they have considerably less tolerance for the "I'll just see how it goes" attitude!

swisslet said...

It was Kate that taught me to inject, fact fans. She is lovely. Maxine wrote me a letter to take to Australia to show to the doctor doing my dive medical, and it made all the difference to his decision. I sent her a postcard from the Great Barrier Reef and she's never forgotten it, bless her!