I have had MS for 14 years and was initially treated with Rebif and then Avonex. I have been on Tysabri since May 2007 and have done well on this. I have tested positive for the JC virus and as the risk of PML increases the longer I stay on Tysabri I am now looking at other treatments which do not carry the PML risk. However, the other drugs available do not seem to be as effective and I feel I would be “downsizing” if I went onto Fingolomoid. Has anyone been on Tysabri for an similarly long period of time or have they changed onto another drug? I would be very grateful for any input as am tring to weigh up the benefits/risks on staying on a drug that I have done well on but carries the risk of PML against coming off this drug and deteriorating. Thanks.
Hi pegleg, I have been on Tysabri since August 2010. I’m sorry that yours came back positive, did your nurse give you any advice regarding this? I completely understand about feeling your are “down grading” as I have been “better” with Tysabri. I feel that they are very good at recognising signs of PML, and if you have good contact with your nurse it’s important to let her know of any new symptoms. It’s such a hard decision to make, but as with every medication there is always side effects. I really hope you get some good advice. Good luck 
Ashleigh x
Have you talked to your neuro about this because I am almost certain that the risk of PML peaks between 2-3 years and then declines, not increases. Since you’ve been on it for 5 years, I would have thought your risk was now getting much lower.
This is a great source of data about Tysabri and PML: Multiple Sclerosis Research: August natalizumab PML update
Karen x
Thanks for your replying and for your advice!
Hi all, I’ve been on tysabri for 4 yrs and jcv negative ( but not got my latest results back yet so hoping it is still negative ) my question though is I have been getting tension headaches the last few days not all day but on an off but I’m paranoid now because of pm but I also suffer from Health anxiety and it’s been at an all time high in the last few weeks so don’t know if it’s the anxiety,possibly perimenopause or something but obviously with my anxiety I’m really concerned about pml… any advice would be grateful x
I have been on Tysabri for nearly 8 years with no relapses. Before that I was on Betaferon and Rebif and was relapsing 4 times a year on average. I was JC- for the first few years and then turned positive. About 3 years ago the test came back with a viral load of 1.5, putting me at the low end of the high risk bracket. I have refused the test since then as the risk of me not developing PML is 99.12%, whilst at the highest risk it 98.8%, putting it over the magical 1% risk, at which healthcare professionals start to panic. I am the only one at the clinic that I am at that does this. As I am MRI’d quarterly. PML will show under it long before it has a chance to manifest itself. My take on it is this: why worry about the risk of PML when the odds are so long? For me the benefits far outweigh the risks and I find it frustrating that HCPs will take people off this incredible treatment due to this risk. Why can’t these HCPs give their patients all the information so that they can make an informed choice as to whether they wish to stay on Tysabri or not? As far as I am concerned they just need to use a dose of common sense, though sadly that seems to be lacking in the world we live in!
Chubbster
Hi Wutus
Chubbsters view on the risk sounds absolutely right. As you’ve said, previously you’ve been negative, and the way they can show up the degrees of risk these days means that even if you’d become JCV+, chances are you’d still be in the ‘low risk’ category.
Plus, MRIs are done very frequently on Tysabri, and more so on a JCV+ person. So PML would show up long before symptoms.
I understand your worry, it’s hard to break the habit if you’re an anxious person. But if it were me, I’d try to relax about it and enjoy the benefits of being on Tysabri.
I had to come off Tysabri because of a liver reaction, but I do wish I could still have it even though I know I’d probably still have the JCV status / risk of PML thing in the back of my mind just as you do.
Keeping fingers crossed for a negative JCV result.
Sue
Thanks chubbster and ssssue much appreciate your views I just need to get it through my stupid brain, I’m waiting to hear from my ms nurse to hear her opinion on it too but just talking to other people going through the same worries helps. Take care and speak soon x
Switching from Tysabri to Lemtrada (Alemtuzumab) is discussed on the Barts MS Blog. Has your neuro mentioned Lemtrada to you?
http://multiple-sclerosis-research.blogspot.com/2016/04/clinicspeak-neurospeak-sequencing-dmts.html
Hi lenney,
no my Neuro hasn’t suggested switching to lemtrada, he’s all for tysabri. Which are you on then ? I do know someone who switched to lemtrada and it’s taking her a while to go through the process. It’s soo difficult to know what path to go down sometimes. I will take a look at that blog though thank you. I wish you well.
Hi, I take Tecfidera, it’s my first DMT and getting on two years. Lemtrada is my back up choice, I agree it can be hard to know which path to take. I wish you well too xx
Do you mean that you have refused to be tested or that you have refused to be told the results of the tests that are made?
My understanding (from my very informative consultant and the tons of paperwork that I was given about Tysabri) is that they MUST keep your JCV viral load under constant monitoring as the levels can increase. I have a screening blood test taken ever 4th infusion and I have a quick screening MRI every 6 months to keep my risk levels up to date.
I have been told that they cannot and will not continue with Tysabri unless the risks are known. The risks can also vary the longer you are on the medication so I have to sign formal consents to treatment at various stages - so far, an initial one, a further one when I was diagnosed JCV+ and a new one after 3 years On each occasion I have had the risks laid out clearly and simply.
Currently my risks of PML are the same or little more than they would be were I not JCV+. I am very confident that I am in control of my treatment and that I have been provided with more than enough information to make my decisions on treatment.
Hi lenney
I don’t know anything about tecfidera, is it a tablet or injection ? And any major dude effects ?
Hope you’re having a good week.
sharon x
Hi Sharon, Tecfidera is a tablet, twice a day, it can lower lymphocytes. The MS Trust drug decision aid is helpful to see the pros and cons. x