Hello folks I hope everyone is having a good day and enjoying some welcome sunshine at last. I have a question about Tysabri and testing positive for the JC Virus that I hope someone with clearer brain fog than me can explain about it better than I currently understand it please? Tysabri was recently recommended and approved for me and I had my first treatment on 11/5 but prior to this I had the JC Virus blood test which proved positive which was obviously bad news, but my MS nurse told me that the good news was there were no JC antibodies detected so my risk factor for getting PML was very low, so I decided to go ahead with the treatment. My head was in a bit of a whirl when she phoned me and now I can’t remember exactly what she said about the significance of these antibodies so can Tysabri users or anybody else who knows please explain it to me again? I have to say I haven’t been feeling great after the infusion and now my mind is in overdrive panicking about PML although I expect it’s anxiety because the nurse who did the infusion made a right pigs ear of getting the canula in and after 5 attempts she had to call somebody else to do it and by that time I was feeling sick and very fragile and nervous although I was perfectly alright before she got her hands on me so my logical mind says it’s just an exacerbation of my normal symptoms. Many thanks for your help. Sue xxx
I’m sorry, I don’t know what this means.
Doctors and nurses often try to explain things to us when we are anxious or otherwise less able than we normally are to take new information on board. I’m sure many of us have had this happen - I certainly have. They are very accustomed to people getting back to them and saying, ‘Look, I know we’ve had this conversation before, but please take me through it again, step by step, because I need to get it straight in my mind, and I haven’t yet.’ I think that’s what you need to do now.
I’ve been on Tysabri for over a year and I haven’t had the test yet (although I expect I soon will.) From what I understand, the risks of PML in the early stages of treatment are very low, even if you positive for JC exposure. But it’s the experts’ opinion you need, not mine. Please do get back to the nurse to get (a) reassurance about how you are feeling now and (b) a clear understanding of what your test results are and what they mean for you. With luck this will take you in the direction of feeling calmer and more in control. It’s a horrible feeling when you feel you’ve got half a story, but it doesn’t make sense and you can’t fill in the gaps.
Alison
x
WIll be interested in ths answer too. Never had any disease mods before and the first thing neuro recommended was Tysabri (stil waiting for first appt.) and neuro was quite keen that i should stil have it JCV or not… was very worried at first at the whole ‘people die and theres no cure’… but on further investigation there ARE treatments and it IS beatable… not exactly total relief but at least better than something completely untreatable and incurable!!
Hi Alison, thankyou for your reply. Of course you are right I will have to speak to my MS nurse and get these doubts cleared up but she’s quite difficult to reach and I was hoping a Tysabri user here could give me some answers straight from the horses mouth as it were. As good as MS nurses are they don’t actually know what this cr*p disease feels like to have or how the various treatments can and do affect our bodies and although she and my neuro were very reassuring about me going on Tysabri regardless of my JC positive result I am still a bit worried, probably because I live on my own and don’t have anyone to talk to about my fears and you know what it’s like late at night, you can’t sleep and your imagination runs riot. She definately told me that I didn’t have the antibodies in my blood and that was a GOOD thing but cos I don’t understand the whole antibody thing I’ve stupidly wound myself up and the positivity I felt when starting this treatment has been spoiled. Being JC positive shouldn’t really be a major concern for anybody because they did explain that probably 70% of the population are and even if you test negative that doesn’t mean you will not pick up the virus later and then test positive so nothing is really definitive. I will try and put it out of my mind cos I’ve googled so many sites about the subject I’m getting more confused than ever and driving myself potty.
MrsP I hope your appointment comes through soon and if you have the test it is negative. Sue xxx
Hi Alison, thankyou for your reply. Of course you are right I will have to speak to my MS nurse and get these doubts cleared up but she’s quite difficult to reach and I was hoping a Tysabri user here could give me some answers straight from the horses mouth as it were. As good as MS nurses are they don’t actually know what this cr*p disease feels like to have or how the various treatments can and do affect our bodies and although she and my neuro were very reassuring about me going on Tysabri regardless of my JC positive result I am still a bit worried, probably because I live on my own and don’t have anyone to talk to about my fears and you know what it’s like late at night, you can’t sleep and your imagination runs riot. She definately told me that I didn’t have the antibodies in my blood and that was a GOOD thing but cos I don’t understand the whole antibody thing I’ve stupidly wound myself up and the positivity I felt when starting this treatment has been spoiled. Being JC positive shouldn’t really be a major concern for anybody because they did explain that probably 70% of the population are and even if you test negative that doesn’t mean you will not pick up the virus later and then test positive so nothing is really definitive. I will try and put it out of my mind cos I’ve googled so many sites about the subject I’m getting more confused than ever and driving myself potty.
MrsP I hope your appointment comes through soon and if you have the test it is negative. Sue xxx
Hi Bella, thankyou for your reply. I’m glad you posted because now I’m thinking that I got hold of the wrong end of the stick completely! The trouble is my MS nurse has a strong South African accent and speaks very quietly on the phone so I probably misunderstood what she was saying to me about the antibodies! I don’t think I’m actually having a relapse as there are no new symptoms, just an exercerbation of my existing symptoms after the stress of my tricky infusion and they seem to be dying down a bit now, but I will phone her just to talk it over again. Sue xxx
Sue when there are no JC antibodies present surely thats a negitive result
I had the test done a few months back I didn’t want it but I said as long as they don’t ask or tell me to come off Tysabri I’ll have it done I don’t know the results to be honest I don’t really want to know but if they tell me thats ok I’ve had 46 infusions and I know the benefits Tysabri can bring I’m more than happy to carry on with it no matter what the risks knowing would ever change my mind I’d place my life on the flick off a coin the life I have now compared to the life I had before Tysabri very aggressive RRMS having a relapse every 4 or 5 weeks ending up in a wheelchair with only the use of my left arm waiting on an electric one so I could get about on my own to getting my life back to almost normal walking and everything and relapse free since I started in August 2008.
I know its easy for me and I hope you never have to go throught that staying on Tysabri is a easy worry free choice for me I’m happy and enjoy each day as if it where my last lol
Mark xx
Hiya
Sorry I can’t give any advice on Tysabri, but thought I’d say I fully understand where you’re comming from with regard to feeling terrible after the nurse messing about with the venflon/canula in your arm. I have rubbish veins, always have and always will and it has often taken a few goes at getting either blood out of me or the canula in me. When I was relapsing all the time, I went to the day ward for steroids they understood this and would wrap me up in warm towels and make sure I head LOTS of water before even attempting to go near my veins. Even then they would ask the ‘expert’ nurse to do it.
There was a nurse in another bit of the hospital that I went to for Mitoxantrone, who insisted she would be able to do it and failed every time, once after 5 attempts my mum told her to stop and get someone better, as she could see I wasn’t coping very well. (she said I do about 50 of these a day and don’t normally have a problem!). When her boss stepped in he said that she shouldn’t have carried on trying and I needed to be left for a while to gather myself as being tense doesn’t help at all. He tried again a bit later and got it first time.
Now I always warn them before hand and make sure I’m warm and had plenty of fluids. If they seem a bit nervous or completely mess it up on the first attempt I ask for someone else. You should have to be put through that, the stress of it can make your symptoms flare up and make you feel sickly for the rest of the day (at least).
Take care
Sue
x
Hi Bella and Mark thankyou both for your replies. I managed to speak to my MS yesterday and yes it’s official, I am a silly ar$e and did get it wrong about the antibodies! To be honest I think I’ve been worrying unduly about being positive purely because my first infusion was so stressful and it was the stress of that which made me feel ill but I’m sure that was because of all the trouble with the canula in but apparently next time it will done by the regular nurse who was away on holiday last time. Sue I will take your advice and warm my arms up as much as I can next month but if this awful blummin weather in London continues I won’t need to try too hard cos it was dreadful today and I’m totally knackered. Bring on the cold and rain again I say!!