hi
ive had ms for 21 years.i was 26 when told.
I have been on beta interferon and fingolimod but i have 2 relapses in 7 months.
My ms nurse is suggesting a new drug
Natalizumab (Tysabri)
infusion once a month in hospital.
i have read and read about this and it scares me
has anyone got any positive info on this drug please.
im thinkinng about going 6 months with no treatment.
many thanks in advance
This will be a reply in multiple bits because I am using my phone and can’t do paragraphs. I am on Tysabri and I have been on it for (I was shocked to find out last week) nearly 4 years now. For me, it has been brilliant with no (serious) relapses. It was the DMD that I was most “attracted” by right from my initial diagnosis so I was very “happy” when I was offered it.
I have had no adverse reactions to Tysabri. I have regular specialist blood tests every few months (more about that below) and routine MRI scans. I have a medical examination before each infusion - usually quite a brief one but sometimes more thorough. (Because not all of F1s on the ward are wanting to be MS specialists (or even full time neurologists!)
The whole process is relatively quick and painless. The infusion goes in through a canula in your arm. Your BP, pulse and temperature are checked at the beginning (partly to see if you have any infections). The doctor does a quick physical exam and then you just relax while the infusion is pumped into your arm. When it is finished some wards will make you stay for 30 minutes or so to check you aren’t having any adverse reactions. With me, they only kept me for my first couple of treatments. No, I can scoot off as soon as the canula is removed.
I haven’t had any side effects from Tysabri or any “hangover” type symptoms the next day. I do know some people have said that they do feel a bit grotty the next day but not me - touch wood! The only time I did was after my first 2 treatments because my consultant is a bit different to others in that she makes people have a steroid infusion at the same time at the beginning. I hate steroids!!! The bad taste in my mouth was disgusting and I couldn’t sleep (got l9ts of housework done though!)
The specialist blood test I mentioned above is the test for the JCV virus. This is a very common virus that many people (nearly half of the population) carry. It is usually completely benign but it CAN lead to bad side effects with Tysabri (a condition called PML). I was initially negative but was diagnosed as JCV+ a couple of years ago. It used to be the case that if you were JCV+ the treatment had to stop straight away but new, more sensitive, tests can now check how much of the virus you carry and what your real risk of developing PML actuallyis . If you have a very low infection load (like me) the risks are little different to what they would be if you were negative.
Like I said, Tysabri has been a very positive thing for me. My MS is highly active and I had had a number of debilitating relapses before I started. It hasn’t cured me and my MS is of a type that the “remissions” in RRMS do not involve complete recovery so I am significantly more disabled now than I was when I was first diagnosed. BUT Tysabri has prevented me from having frequent, further debilitating relapses. I think of it like a bullet proof vest - it doesn’t stop the sniper shooting at me, it doesn’t stop bullets hitting the whole of my body BUT it does stop most of the bullets getting through. So, all in all, I am very happy to keep wearing it!
Your decision about whether to take Tysabri is one for you and you alone. I cannot tell YOU what is right or wrong for YOU. However, if I was in your shoes, I would certainly consider taking the Tysabri that you have been offered and I certainly wouldn’t countenance giving up all DMDs even for a few months. Your MS appears to be highly active with you having lots of relapses. You are being offered what is the most successful “mainstream” DMD by your Consultant. It is not a offered routinely - it’s expensive! - so it is not doled out like sweeties. The next treatments after Tysabri would be the real heavy guns of Campath or still experimental stem cell therapy.
I have SPMS and was part of a Tysabri trial for 2.5 years. No positive or negative reactions. The PML risks were explained and I made the decision to proceed based on my own risk factors. No one on the trial had any adverse reactions and it seemed to help some people a lot.
Which ever way you choose to follow I wish you all the best
Mick
Finally, you say that you are worried about the risks. Yes, there are risks as there are with all medications but you need to properly assess those risks for yourself. So if, for example, it said that taking a drug had a 1 in a 100,000 risk of serious side effect leading to death but it reduced the risk of relapses by 70%+ or that not taking it at all would remove what limited protection your current DMD provided what would you think? You know that not everyone relapse is minor and your next relapse could be the one that completely paralyses you or worse.
The Barts & London PML Risk Guide is a reliable source of information.
http://multiple-sclerosis-research.blogspot.com/2015/12/clinicspeak-natalizumab-pml-risk-update.html
Tysabri is my saviour, prior to using it I suffered 5 relapses in a few months. I believe this was from using Avonex.
I know there’s risks with it BUT if I’d carried on the way I was going, who knows how I would be now. Having said that it didn’t make me better but definitely didn’t make me worse.
Good luck