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Help needed

Mikep 16 Jun 2012 at 10:27AM Jc test and tysabri Hi I wonder if ant one out there can help me. I am gathering info-weighing up pros and cons about TYSABRI for myself. If the results of the JC test come Back negative for PML, the neuro has given me to options for DMT. They are as follows 1- TSABRI 2- COPAXONE and MIXOANTONE. Bit of history. This is my 2nd relapse in 6 months. I had steroid drip in hospital-found it eased symptoms. I do not take any medication as yet. I was dx in may. Still not got over relapse-since mid April. Neuro said It was quite aggressive as time between relapsed was short and this episode was bad So in short I would like to know what experiences are like in “real life” (good, bad, indifferent) and not in a glossy, stating what it could be like Thanks in advance or your help Ps I posted this on just diagnosed not diagnosed by accident still unsure what to post where. When you read the history you will see why.mike

If you are negative for JCV you have practically no chance of getting PML - there is always the possibility that someone will infect you with the JC virus later, but if you have made it this far that seems unlikely.

Given the fantastic results that I have had on Tysabri I would definitely opt for that. There is a UK Tysabri group on Face Book where you can see how other people feel Facebook Groups

It is ultimately your decision. Good Luck.

Liz

I’ve had to cope with MS for + 13 years. My doctor ‘admits’ that he doesn’t quite ‘understand MS’ (and his own brother HAS MS AND HE IS QUITE ‘PREPARED THAT HE MAY GET IT!’. THERE IS NO CURE JUST NOW!!! AND HOWEVER MUCH THEY SAY THAT THERE WILL BE ONE - THERE IS NO CURE JUST NOW!!!). (Sorry to be so ‘NEGATIVE’ but I’m just being ‘REALISTIC’ - I WOULD LOVE FOR THERE TO BE A CURE BUT ALSO I DON’T WANT TO GET ‘PEOPLE’S HOPES UP???’

Marcus.

I have been on Tysabri over a year - I am one of the unlucky people who it has not worked for. I will be stopping it shortly - my ms has now become progressive rather than RRMS. Experience has been fine - a bit of hassle getting up to London and spending most of day in hospital - but if it works it is worth it. I feel tired after infusions but no other problems. JC virus negative means minimal risk of PML which is good - they will still monitor closely as it is theoretically possible to contract the virus in everyday life. There are some lucky people who will testify to the positive effect tysabri has had - eg improving walking - but I went into it just hoping for reduction in relapse rate. I would say that with these reasonable expectations it is worth a try - I would still try it if I had my time again.

I have been on tysabri for 18 months now and while it has stopped the relapses and given my body a chance to repair itself, the improvement has been slow but steady and even tho’ I tested positive for the JC virus I wouldn’t want to stop taking it and risk going back to relapses every few months.

Hi Mike - I was diagnosed in 2009 at the age of 25 and went straight onto REBIF. I hated it, I didnt cope well with the side effects and continued to have relapses. So at the end of 2011 I came off it and start of 2012 started Tysabri - I have had 5 infusions now. On my 3rd infusion I found out I was JC Positive. I always knew that the JC result would not alter my decision to go for Tysabri - for me personally I wanted the most aggressive drug I could get my hands on. Apart from being knackered and a headache afterwards - the infusions have been fine. However, I have not seen any marked improvement to how I am but at the same time I have not had any more relapses. But there are people in my group and on the facebook group who have seen great improvements and are almost craving their infusions by the time they come along - I think its like any other drug, peoples opinions on it will differ but at the end of the day its personal choice and how you feel you react to it.

I hope you get on OK making your decision!

Hx

I started Copaxone in May this year,no problems with it and it just slots into your daily routine. I chose that as I didnt want the side effects of the others.

If I get to the point of Tysabri being offered I wouldn’t hesitate regardless of JC result , and in full knowledge that improvement isnt guaranteed.

You are doing your research,and at the end will make an informed decision. That decision is then right for you at the point you make it.

Good luck and good health whatever you choose.

Pip

Hi pip The more comments I get I can see the benefits of tysabri. If I test negative it looks like a one deal, but will still ave to see if positive. At the moment so much has happened since dx 17/5/12, my head is where the sun doesn’t shine and it has been so quick, have to talk to ms nurse and shrink, I ain’t lost the plot yet but I cannot come to terms with it. Mike

Then keep talking away on here about any or all of it… thats what we are good at on here.

I was dx Feb so I know where you are coming from. The dx process takes for ever then the world seems to go into overdrive.

Pip

I was on Avonex for 10+ years and it worked for most of that time. Then it stopped working. I was offered Tysabri and went for it without much hesitation - the previous couple of years had been frightening and not fun. The year + I have been on Tysabri has been a blessed relief - no relapses. I don’t know my JC status (waiting for results.)

As someone else said, if you’re JC negative, your chances of PML are really minute.

Good luck with your decision.

Alison

x

Hi Pip I went into hospital on 7/5/12 as recommended by a rheumatologist. I had 1 x MRI Back, 1 x MRI brain, 1 x CT brain, 1 x LP. lo and behold I was discharged on 17/5/12 with a diagnosis of MS. it’s the speed of it all I struggle to come to terms with. It’s that which I have probs with. Mike

For Mikep

If you got a Dx that fast, you were doing much better than most people - but it sound about right for the tests to be considered if there was someone available for each one.

MY wife had an MRI about two years ago. Done on a Sunday, in an NHS Hospital, by a private contractor, with the scanner in a large trailer sitting in the carpark at the back of the hospital. When it was finished, she was told that " … the scans would have to be sent to South Africa for assessment, and this would take at least two weeks …".

This was something that amused me (for a given value of “amused”) because the scan ends up as a simple digital file, and should be able to be sent to her consultant, and/or attached to her computerised notes. The thought that there was no-one local with the expertise to read an MRI is just a little bit frightening, methinks.

Geoff

Hi Geoff I was amazed at the speed all his happened I have one seen a consultant neuro and he is taking JC virus tes, sending to Sweden, wonder what result will be as we beet them in euro’s? He has also given me an indication of what my DMT is going to be. The NHS Have pulled out the stops for me, they have been great. The scan had to be looked at by a radiologist at another hospital, with neuro specialists. He was on holiday or 2 days. Mike

No wonder its all a bit frightening going at that speed,but it has saved you the usual years of limbo so a blessing in disguise—except the dx of course.

I assume as tysabri is an option it is rapidly evolving? Was it on your radar that ms was a possibility or total shock?

Are you more sure of which option to take yet?

Pip

Hi Pip Ye it was quick. I had a feeling when I kept falling over, I don’t drink, and if I did I wouldn’t fall over. The help from all has been invaluable, I think that if I am JC negative I will try tysabri. I I am positive I will try the other until it does not work then I I’ll use tysabri if test is pos or neg. Mike

Glad you have got it sorted in your mind, its now in the hands of the pct and funding I suppose.

It took 3 months for me to start Copaxone,not sure if Tysabri and other areas are longer or shorter waits.

Take care

Pip

Hi I do not think funding for either will be a prob as the guy who olds the purse strings suggested them-I hope Mike