Hiya everyone I hope you’ve been enjoying some lovely Spring weather today!
Sorry if this has been discussed before but I want to ask a few qiustions about Tysabri please. I heard today from my MS nurse that my neuro has given the go ahead for me to start Tysabri, yippee!! She is now going ahead to request funding and although it’s the news I have been waiting for I am also a little apprehensive. Assuming funding is approved what will happen next? What tests do they do before the first infusion and would I be tested for the JC virus straight away or does that happen at a much later stage? What sort of monitoring does the hospital do after each infusion or do you just get up and go home? Sorry for so many questions and I know I will have a chance to discuss all this with my MS nurse at some stage but I’d rather hear what the people who are actually on Tysabri have to say cos they really know how it is. MTIA. xxx
I think it depends on the hospital as to when they do the JC virus test - it’s a blood test that has to be sent to Denmark - mine was done after 1 year on tysabri but I know of others who have had it done when they first started.
The only tests when you go for your infusion are urine and swabs for MRSA, they do occasional blood tests to check liver etc but not every time. The doctor or nurses run through a few questions on your general health and any changes since last time then someone will insert the cannula and off you go!
You are monitored quite closely during your infusions just in case there is an allergic reaction. It takes an hour for the tysabri infusion and then another hour for a saline flush and then you can go home.
I have an MRI once a year to monitor any changes in lesions.
Make sure you take magazines or a book as the time can drag a bit.
Hope it works for you - it has made a big difference to me and stabilised my MS
I have been on Tysabri for 9 months now and there is a group on Facebook called "UK Tysabri Users (Natalizumab) which could answer all your questions! The procedure does seem to vary around the country.
I live in Norfolk and here is how ours work: Before starting I had an MRI done and also some blood tests. At my first infusion they did the JC virus test which took 3 weeks for the results to come back. At each infusion they check my wee, temperature & blood pressure before each infusion. The MS nurse also asks some questions each time before giving the go ahead. They do monthly blood tests for your liver, kidney & blood count at my hospital - I have to get them done a couple of days prior to each infusion.
My infusion: Absolutely nothing to worry about…the thought of it is worse than having it…you don’t even feel the medicine go in. I have it done over and hour although in the beginning I had it over and hour & a half as I got a bit of a headache for a few days afterwards but this doesn’t happen now. I only have about 10mins saline…it’s just to make sure none of the Tysabri is left in the tube as you want to make sure you get all the medicine! Some hospitals make you stay for an hour afterwards (the company does recommend this) but ours let us go straightaway so long as we feel ok. You can sometimes get an allergic reaction to it thats why they like to keep an eye on you. They always check my blood pressure afterwards. I usually feel absolutely fine afterwards perhaps a bit more tired but more often than not drive myself home.
I am pleased I changed from other dmds as I used to get a lot of side effects from the injectables but with Tysabri is different. The PML thing can seem very scary but there still hasn’t been a case in England so the chances are remote.
Anymore questions then please feel free to pm me and if you are on facebook join the group - we are a nice bunch!
And there was me just thinking now I’ve got the go ahead how long does it take to get going? Think I got so focused on it being my miracle solution that everything just seems like a minor inconvenience. My consultant did tell me the MRI would be the only prerequesite which I’ve already had done, then pretty much the same as when you get IV steroids. Funnily enough since we made the decision my MS is actually starting to behave itself (generally I think of it as being like an extra one of my children, acting up when I least need it), and I was finding that some of my get up and go had returned, but I went and blew it by doing too much on monday!
Somehow I can’t see my getting mine before the easter break now, as I can guarantee I missed last months funding meeting and by the time it gets through next months, it will be easter and management at hospitals goes on a go slow over any bank holiday (I know I work for the NHS), so it will be another sick note and more chance of them starting the disciplinary procedure for capability issues.
Thankyou Andrea for your reply, it’s so helpful to hear of other people’s experiences and I am reassured to know they do all these tests before the infusions. The wee thing is a bit of a concern though as I tend to retain urine and I guess that if an infection showed up they wouldn’t be able to do the infusion? I think I’d better start drinking loads more water and noshing loads of dried cranberries to try and blitz me bladder. I spoke to my MS nurse today and she has already applied for funding so I hope it gets approved and I can get started soon cos I’m really excited and feeling positive about this treatment. Sue xx
ggmarch I hope your funding and treatment all gets sorted out quickly too. Sue xx
Just heard today, got my first infusion date for 2 April, I’m almost excited. But typically has to be first day of school holidays, so bit stressy trying to organise 4 children, as we can’t get all of them in 1 car and I’m not sure how well I fare with the infusions especially as the first time I had steriods I had a weird reaction. Think I am just going to have to drive myself and if I’m feeling a bit unwell afterwards hang around until I feel up to driving. And today we went into town wedding ring shopping, and although it was exhausting 2 hours in town, I’m really pleased its done and I managed without to many tea breaks (just one).
Susie27, I am not from the UK, but, I thought I’d tell you one thing I learned to do. I was on Tysabri for 1 1/2 years. Personally, I liked getting the infusion as I really disliked having to deal with the shots of Avonex, and side effects.
So, in my experience I felt like the day of the infusions I got a little boost of energy, that seemed to last for a good couple of weeks. That was nice! I would start to feel a little extra bit of a drag in my energy when I was close to the end of each month, just before I’d go in for the next boost! That is how it felt to me.
I also learned that for me, it was important to drink lots of extra water the two days before the injections. That way, my veins would be easier for the nurses to find to put the infusions in! Could just be my veins, but, the nurses said it is always a good idea for patients to drink the extra water before going in there!
I also would take a small blanket to put over me when I sat in the room. The nurse told me, that they keep the drug at a room temperature, and that when it goes into our bodies, the temp is lower than the body temp, so, it makes you cold! So, I just kept a warm blanket on, and that helped.
So, anyhow, those are the small little hints I thought I’d share with you. I am hoping to get back onto the Tysabri again soon. I haven’t been on it for over a year now, just because I moved, and had to make changes in doctors and stuff.
Great news ggmarch, I hope your first infusion goes well! Not too long to wait now, just 8 more sleeps! Sue xx
Thankyou for your tips sheriz I’ll bear them in mind when the time (fingers crossed) comes for my first infusion. I hope you can get restarted on Tysabri soon. Sue xx
You will no doubt already know this , but water , water , water i drink so so much the night before & day of (i drink lots as a rule everyday) but i found this is a god send, it cuts my headaches the sicky feeling tiredness etc & makes the cannula process so smoothly , I hope this goes well for you
