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How long to get Tysabri

Anyone any idea on how long between my consultant saying he wants to start me on Tysabri and it actually starting?

He gave me the impression he would have to contact by letter the MS nurse consultant and it would really depend on available slots to do it. But I need to give my work some idea of when its going to start. Oh and I’m impatient to start feeling a little better as today when I took my daughter to music group I couldn’t make my hands do “chatter chatter chatter” ion the wheels on the bus!

Hi,

If you are already on one of the injectable DMDs then you have to be off it for three months before your first infusion.

If not, then it’s a case of having an MRI scan & getting the funding from your PCT & a treatment slot in place, which can be anything from a few weeks to a few months. In my case that was sorted out within the three month “DMD clear” period.

Good luck with it. I’m on my 19th infusion, so far no relapses which is brilliant news as far as I’m concerned.

Not on them, think I had my last attempt at those back in 2007. I’ve already had the MRI which showed very recent activity. I definitely need to get on to it sooner than within 3 months. Running out of time with work now and my get up and go went ages ago. I asked my OH the other day if it was possible to die from fatigue! Although I’m a bit worried that I’m pinning all my hopes on it working and it might not or I might be allergic (which is why I stopped taking capaxone and Avonex).

I didn’t think the PCT thing was an issue now as it does not require individual funding, it has been approved by NICE I thought.

Yes, it has been approved by NICE but that doesn’t automatically mean that your PCT have to give it to you, it’s another postcode lottery unfortunately. In my area, my neuro has to give a full justification for every case to the chief pharmacist & if he doesn’t give the green light then it doesn’t happen. I’m not trying to scare you btw, just telling you what happens around here.

If your neuro already has a number of patients on it then they should have a system already in place, so hopefully it will be quicker than 3 months. As you’ve already had the MRI & you’re not currently on DMDs then it’s just down to them getting their act together by the sound of it.

Just keep badgering them until it’s sorted is my advice. When it was me waiting I would call my MS nurse every couple of weeks just to make sure it was all on track, it doesn’t do any harm and ensures they don’t forget about you.

All the best.

Thanks for that I suppose with all the other pressure I’m getting from work (just spoken to the union today and they are not happy) I just want to get going, but I work in the NHS and I know how slow the cogs sometimes turn. I’ve even had dealings with a drug that needed PCT approval, and know that it can take anytime between a few weeks and months. I know that there are definitely quite a few patients on Tysabri (there is even another one from my GP practice and thats tiny). I suppose I should wait a bit more than a week before I start to chase them! If all else fails I finally have an MS nurse appointment in April so maybe it will be sorted by then.

I had a relapse in Nov/Dec this lead to an MRI the week before Xmas that showed lesions, I saw my consultant in the first week of Jan and he said he would write the case for funding, I started Tysabri the last week in Feb. That was just over a year ago and although it has been no miracle cure I am so much better than a year ago - I dread to think what I would have been like if I hadn’t had Tysabri.

I get treated at the QE in Birmingham, where abouts in the country are you?

I’m in gloucestershire. Treatment at Gloucester Royal Hospital. I already know the PCT are notoriously bad for doing things. I had to wait 5 months after I moved to see a health visitor (in the end I made a PALS complaint) and when I asked why this was I was told the PCT fund the service very poorly.

I have been relapsing again and again with very little break since Sept/October. MRI scan in feb showed active lesions and much as I was waiting to get superpowers as the scanner stopped working while I was in it due to a power cut they haven’t yet shown themselves. Today even my legs are stiff and wobbly. Very hard carrying a 26lb baby upstairs with wobbly legs and dodgy hands!

I think ‘it depends’ is probably the answer, although I’m not quite sure on what! I’m in the same part of the world as you and things moved very fast once the decision had been made about a year ago (I had already had the necessary MRI.) I can’t remember how long the gap was between last Avonex injection and starting Tysabri; I’m pretty sure it was not much longer than a month - certainly less than two. I think local practice varies on how long a gap (if any) they want. All I can say is that the getting on Tysabri business went very quickly and smoothly for me and I hope that it is the same for you.

Alison

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Thanks for all the advice, I’m just looking for an instant miracle cure, and want it now. Today would be a good day to hear, its my babies first birthday, last week when I was told it was my middle daughters 8th birthday. Lets hope something good comes quickly!