Last reply 3 years ago
Tysabri – am I being unreasonable?

I had my JCV test on March 4th and was told that once the results were in someone would call me with the results so I waited and no call (but I was told it could take a few weeks as they are sent away).

However a letter landed today with an appointment for my first infusion tomorrow! Not much notice, and no word on the JCV results.
So I rang them and they couldn’t find my results and all the nurse could say was “well there is virtually no risk in the first year anyway”.
I have waited all day and no one rang back with the results and I even tried ringing them but only got an answer phone.
I was just wondering what would the MSers on here do in my position? I’m at a loss. My MS nurse line isn’t even open tomorrow.
Do I just turn up hoping someone has the results and then I’m in an awkward position if they are high risk and I say no to treatment or there is no results there at all.

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3 years ago

I can understand your concern, but I would think that they should have all the information for you when you go for your infusion.In addition they probably would have informed you straight away if you were positive.

I was not checked to see if I had the Jv Virus when I started Tysabri. In fact I started it from the very beginning when it was a trial drug.
I obviously get blood tests done now, and sometimes I am positive and sometimes negative, my doc said it could be a false positive.
All I know is that I have been on the drug since 2001 have only had one relapse since then,when they stopped the drug for 6 months.
So for me its a miracle drug, yes I do worry about the side effects but I wouldn’t like to stop taking it now unless I had too.
I hope all goes well.

3 years ago

@laurabeebee , there are risks with all of the DMDs we take. But, the risks are known risks and you will be regularly monitored to mitigate these risks.

Have faith in your medical team that they are working in your interest. 😉

3 years ago

It’s perfectly reasonable to be nervous, but it’s a calculated risk.

Having SPMS, the choice was between being on a clinical trial using tysabri, or hoping for the best.

I was tested and I’m positive for the JC virus so, in theory, I have a chance of developing PML. It doesn’t worry me though as I’m way more bothered by MS having a free reign over me! Although the trial was double-blind at the start, I’m now having open-label Tysabri.

No treatment is risk-free, but the principle of informed consent is important. If it is important to you, decline having your first infusion until you get the JCV result, but if you will have it either way, then the decision is easier.

3 years ago

@laurabeebee I don’t think you’re being unreasonable to expect more consultation and notice. I’m going on Tysabri next month but was made aware I was jcv negative and have been booked in for a education session before I begin.

If it is an peace of mind, I’ve also been told the first year is risk free in terms of PML.

3 years ago

It’s true that the odds of getting PML are very low for patients naive to other DMDs or otherwise have normal immune systems. But as we know you have been DX’d with MS, so we can assume that your immune system is not completely normal. Your nurse wrongly concluded that the tests required for dispensing Tysabri were unimportant. If your “team” has already failed you by not “finding” and reporting to you as promised the results of the JCV screening ,then they clearly have not earned your trust. The nurse’s cavalier attitude about your test results and then suggesting it was unimportant is inexplicable and I would never feel comfortable with her. Do you suppose that the Tysabri REMS program was designed to prevent that sort of complacency while removing as much risk as possible when RXing and infusing a potentially harmful drug? You will be relying on your team for the best advice about all things MS into the future. Make sure that they are up to that very serious task and deserve your trust!

3 years ago

This is my first treatment so I am very worried.
The head MS nurse rang me back yesterday evening and confessed that they had not had any of my results back from the lab at all! I’m not sure what to think of all this.
He did say it’s not unusual for treatment to be started without the results, however he noted my concerns and said he would be happy to keep my place open on the programme and he would send me another appointment in 4 weeks in the hope that the results are back by then. I think he was a bit miffed about why it was taking so long as they would at least have the basic positive/negative result back fairly quickly before having to wait a few weeks more before the titre result.
@mbrsinc yes I agree that trust is very important and I’m not happy with the response from that first nurse on the phone. She isnt my named nurse but I guess that’s not the point.

3 years ago

@laurabeebee do you mind me asking where you’ll be going to receive your treatment?

3 years ago

@andysot Sorry Andy I only just got round to updating my location on the map as I couldn’t get it to update for me before. I’m near Belfast so will be getting my treatment at a hospital based there – if all eventually works out!

3 years ago

No worries @laurabeebee, I was just curious as your experience sounds very different to what I’ve become used to here in London. That said, I’m sure yours could just be a one off.

I am sure it will all work out for the best and although I haven’t started it yet, the feedback I’ve had about Tysabri suggests it could have a very positive effect on us both. Good luck!!

3 years ago

My God, more evidence for my case.

I will say though, even though its after the fact and too late now (probably, what do you mean you’re at a loss and what should you do? Seriously?

1. For the infusion scheduled next day, easy, DO NOTHING but cancel if you’re feeling kind, just don’t show up if your not. Reschedule for later when you have the info you require.

2. Slap your nurse upside the head and ask him/her if they want some MS and a stick jab of PML for fun?

3. Whoever has or should’ve had your results, they take about 3 weeks max, they have to send your blood to Denmark or something like that, anyway whoever had them, no more phone, rock down there and start making your presence felt. Nobody likes a scene, especially a patient screaming malpractice like a lunatic out the front of the building. They’ll attend to you very quickly then I have no doubt.

Anyway it troubles me greatly not many seem to naturally think self preservation in these scenarios. What’s in your best interests on the balance. F*** anybody else for just a moment, what’s good for you. Easy

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