I have been on Tysabri for nearly 3 years now - and part way through found out I was JCV positive.
Now, those 2 factors combined put me at a higher risk of PML, and despite reassurances from the team at the hospital, I am finding every little thing makes me worry about this risk.
Don’t get me wrong Tysabri has made a big difference to me and my relapse rate…just wondered if anyone else had felt like this and how you are dealing with it. I am thinking about coming off it cos mentally I can’t shake off the woryy about the risk…
All comments very welcome!
Helen, if you use Facebook, you might like to join the UK Tysabri Users’ group (it is a closed group, just for people on Tysabri) - there are likely to be plenty of people on there who have personal experience of this dilemma. It is a friendly group, and quite big now.
I totally appreciate how you’re feeling. About 3 months ago I was given the choice of Tysabri or Gilenya. It was left up to me to make the decision. My MS nurse gave me all the information and literature but no-one would offer an opinion as to which they would recommend. My GP had never even heard of them! So I went away and researched it. I have to say the possibility of PML, however small, put me off Tysabri and I opted for Gilenya. There is still a remote possibility of PML with Gilenya but not as much as with Tysabsi. It still worries me though. I still haven’t found out the results of my JC virus test so I don’t even know if I’m positive or not.
Not really much help in the way of advice but I do understand your worry and I know a little bit about what you must be feeling. I’m sure they’ll keep an eye on your bloods and look after you. Best of luck whatever you decide.
JZ, I am absolutely flabbergasted by this! It is one thing to leave the choice of first-line DMD to the patient - they are much of a muchness in terms both of efficacy and safety - but the stronger drugs are quite another matter. To put the names ‘Gilenya’ and ‘Tysabri’ in a hat and invite you to draw one out with no expert recommendation either way from your neurologist is outrageous and indefensible, in my view. I hope that whatever you end up with suits you, but I do think that your neurologist needs a clip round the ear!
Helen, in terms of your original question, I have no personal experience. I have been on Tysabri for a bit over two years and have not tested positive for JS virus exposure so far.
It must be so hard to weigh up against each other risks that are so different - the small risk of a very major impact event like PML against the risk of one’s currently controlled MS going back to its old ways, but without knowing for sure what that might mean for you. I think there is something deep within us that is strongly averse to making the ‘wrong’ choice when we have some say in the matter (for instance, Tysabri or no Tysabri). But what sort of filtered word-ing choice is that?? It is not like we have any choice over what our MS will do if left to its own devices. I would suggest a very conscious decision on your part to take blame out of the equation. Whatever you decide to do or not do will not be your fault. Whatever you decide to do will be the right thing for you now, knowing what you know now, and having no more privileged view into the future than anyone else has.
There is a hint in your post that you suspect your fears about PML are higher and more troubling to you than the actual risk of getting it. Any chance of getting a couple of sessions with a trained counsellor to help you unpick your hopes and fears? Sometimes just talking through one’s feelings with a person who is emotionally detached and has no axe to grind can help clarify one’s thoughts on difficult issues.
Anyway, good luck with your decision.
The trouble is that MS is not exactly risk free either and a chat with your Neuro about options available might help clarify the situation.
This is the clearest explanation of risk I have seen and slide 4 is good, but do look at the others too for the whole picture.
All the best with your choice.
Ok them let me get this straight, you have been on Tysabri for 3 years and have just found out that you are JCV+ And you are concerned about the risk of PML.
My take on it is this, why worry about something that is a minute miniscule risk when the ebenftis FAR outweigh the risks. I have been on Tysabri for 4 years my next infusion and I have found it nothing by a miracle drug as far as the MS is concerned. I had tried both Betaferon and Rebif respectively for a year and though they slowed the severity they didn’t slow the rate of relapse, I was averaging 3 relapses a year. Since being on TYsabroi I have had none. I have managed to complete an Access to Health Studies course, I am studying A Levels with a view to do a part time OT course at my local uni, without TYsabri this would not have been possible. I am lucky I don’t suffer with chronic lassitude fatigue and this also enables me to keep fit as I play wheelchair basketball.
I hadinitailly refused to take the JCV test as I wouldn’t come off of Tysabri even if I was due to the benefits outweighing the very slight risk of PML, my infusion nurses bullied me into taking the blood test and it came back negative and wouldn’t have been bothered if it was positive as you are monitored very closely if you have it. I may be a bit blase about PML, but for me at least, it is all about balance and that makes it an absolute no brainer for me. So coming off Tysabri for this very smalll risk when you ssay that it has really worked for you as you were probably relapsing quite badly before you started it does seem quite a bit daft from my point of view.
I agree with Andy but also understand your concerns, you just have to do what is best for you in the here and now, in many years to come i would hate to think that your condition could deteriorate significantly because you chose against a proven ‘wonder’ drug due the ‘possibility’ of an infection such as PML.
I tend to want to live my life these days thinking of having no regrets and not worrying, what will be will be, you just have to choose what is best for you, i am on Tysabri, however i am jc negative, i genuinely believe if i were told i was jc positive at my infusion on Tuesday, i dont think i would bat an eyelid, my quality of life here and now is dramatically better due to Tysabri, being jc positive in no way means you WILL get PML, just increases chances.
Whatever choice you make, know that you will have lots of support and understanding especially on here.
There is also a risk of bad rebound relapses if you’ve been on Tysabri and come off it. You should be aware of this and discuss it with a neurologist before you start thinking about coming off Tysabri because you are worried about the risks of PML (frying pan? fire?)
Helen, I am in the same position regarding Tysabri and being JC virus. I think there has been pressure on MS nurses to arrange blood tests on all Tysabri users not previously tested. I saw my neurologist today who agreed that it is better to carry on the treatment subject to annual MRI scans because of the rebound risk of stop taking the treatment. He thinks the PML risk is about .5%. My blood was tested in Denmark and recent advances means that all future tests will contain more details, rather than a positive/negative result you will get a score - the higher the score measured in tilans the higher the risk. I hope you do not worry too much, as in truth there is not much you can do about it. All the best, Peter
Hi Helen I had the JC virus blood test before starting Tysabri in May 2012 and understand your concerns. I tested JC+ but I had already decided to go ahead with the treatment because it’s the most effective drug there is currently for preventing relapses and that was the most important deciding factor for me. I had to sign a consent form and will have to do so again when I’ve been on the drug for 2 years and even though the risk of PML will increase slightly I will have no hesitation in going forward.
We (there are 6 of us in our group) are monitored very carefully and before each infusion we are asked many questions about our general health in the 4 weeks since the last treatment e.g.whether we’ve had any unusual/different symptoms, any infections, or had a cold or cough, have we taken any antibiotics etc etc. If all the answers are negative the infusion can go ahead. The infusion is done by a specialist nurse from the drug company because specific training is needed to give it, so ‘ordinary’ nurses are not allowed to do it. Before, during and after each infusion the nurse checks our blood pressure and temperature and when the infusion has finished she takes two lots of blood which is checked to monitor any changes in liver and kidney function. Because our nurse is employed by the drug company that makes Tysabri she is very clued up about it and has access to all the latest info and statistics which she passes onto us so I feel in very safe hands. We are also given an MRI annually, I had mine in May and I’m pleased to say it showed no further lesion activity i.e. my MS has stablised so that was a good result as far as I’m concerned.
To be quite honest with you I was a bit worried at first because it’s a serious drug but after the first couple of infusions had passed and I didn’t get any adverse side effects I calmed down. Now I don’t give PML a thought but then I’m quite a fatalist and think along the lines of whatever will be will be. I also make a concious effort to stay positive and I believe that being on Tysabri helps me to do so because I wasn’t taking any kind of DMD before and now I feel I am fighting the disease as much as possible so the psychological benefits are as important to me as the physical ones. Whatever you choose to do Helen I wish you all the best. xxx
P.S. Peter, what are tilans please?
Hi Helen, there is a REALLY informative leaflet put out by Biogen (the company that makes the Tysabri) it is called “Stratify JCV” I got mine from my MS Nurse- it really puts things in context and might help you further…I am also JC positice so totally understand your quandry. Cheers SJB