jc+ and tysabri

[derby42]

Got my result when the nurse called to tell me, she suggested I think it over for a few days but I got her to book me for my first infusion instantly, it will be on the 25th July.

I am frightened, never been on any kind of ms drug before, but I am so very desperate to be a proper mummy.

I feel like I'm in some alternate existence and it's not nice.

[Stumbler]

Derby, I wish you all the best for this treatment. It seems that you've been struggling for too long without some medical assistance.

 

Try not to worry about it. The medical people know what they're doing these days and know how to effectively monitor you for any adverse reactions.

 

Good luck.

 

.

[The Dragonfly]

Good Luck Derby

 

I know exactly what you mean when you say, 'desperate to be a proper Mum,' and fingers crossed that is exactly what you'll get while you start tysabri.

 

All the best

 

Jen x

[Nick]

Derby,

 

I am well over half way through a two year trail with Tysabri. I don't think you should worry one bit about this. As Stumbler says the medical people know what they are doing! It should quickly become a simple once-a month routine for you, of course you will be worried about things, but once you see how it goes it will no longer bother you!

 

So Chillax! You are not in any 'alternate existence' You have a great chance to use one of the latest and most hi tech medicines out there! Anywhere in the world. Something that costs around £30,000 a year for places without a health service! Being JC+ usually means that you may be restricted to a limited time on Tysabri (Normally 2 years) with a very slightly increased chance of getting the brain infection ( PML) That aspect should also be seen in the light of the fact that they are talking about 'increased risk' People who don't take the drug or have MS also get PML. Its very very rare and only very slightly less so in this situation.

These are all things to weigh up, but perhaps a much better way of looking at it is that all things carry 'risk'. Every time you cross the road you weigh up the risk of getting run over .......but you still cross the road. Then image a road where there are 5 lollipop ladies waiting to help you make the decision to cross + several boffins telling you all the facts about how dangerous or safe this part of the road is. That's the sort of support you have before they are allowed to even use the drug and they will also monitor you for any signs of trouble. You are in good hands!

 

DONT WORRY!!!!!

 

Nick

Edited 4 Jul 2014, 7:02 pm by Nick

[Scully]

Hello Derby,

 

I'm not sure if you are saying you are positive for the JC virus? Assume the + sign means you are?

 

Either way, the neurological team,as the others have said, know exactly what they are doing, and wouldn't go with Tysabri unless they were sure it was right for you and will help.

 

Look at this step, onto one of the most positive and 'breakthrough' drugs for MS as a good thing.

 

All the time I've known you, your MS has been pretty rotten to you. I am sure that now you have been offered Tysabri you will see the much improved person you've been hoping for. It's about time you had a decent break !

 

Don't fret and worry over it, just think to yourself, ' this DMD is going to help me get back to the person I want to be, the person I used to be and it's going to be fab ! '

 

Scully

x

 

 

 

 

[lala]

Good luck starting treatment Derby, I really hope it helps to get you back on your feet soon.

Lx

[derby42]

Hi everyone

been in tears reading your replies and just showed them all to hubby who I don't think knows just how scared I am of this, well, I think he does now he's just read this and seen my response to your replies.

You make good sense of course and there's no chance of me pulling out, I'm aware of your journey Nick, I think you're very brave, not even knowing if you're getting it or not. Did you take the test for the JC virus?

Scully, yes I did mean I tested positive for it and yes my my ms hasn't been kind and then I test positive for this so I'm finding it hard to be optimistic but all your replies have helped, thank you everyone x

[Scully]

Bless you. Believe in yourself Derby, and believe in the treatment. Looking forward to hearing that you will be doing well on the future

Scully

xx

[Mick]

Hello Derby

 

I have been on tysabri since the 25/10/2012 and its great havent had any reactions.

Edited 5 Jul 2014, 11:14 am by Mick

[Nindancer]

Good luck Derby

Sonia xx

[Rama]

Very best of luck with this Derby.

 

Gill x

[Mal]

Good luck Derby !

 

Mal x

[derby42]

Just one question, am I not supposed to have another MRI before starting this treatment because I've not had one since I was diagnosed over 3 years ago?

[Stumbler]

Derby, I've only ever had one MRI back in the late 90's. It's not a pre-requisite for Tysabri, as far as I know.

 

These scans are expensive, so in today's financial climate, they'll only be requested if absolutely essential.

 

[Nick]

Firstly Derby,

The matter of the JC Virus was well discussed with me and I was tested. In my case it was negative, but this has to be seen in the context of what I said earlier about what being + or - means in the context of risk. The risk is very small, like any medice you will find the risks explained, they have to be, in the leaflet. In the case of this drug a huge amount of research over many years has allowed them to say that within reason this is a safe drug but with some 'risks'. No different in fact to anything you take. As you can see from the responses here are all very positive. Taking any positive action with yourself will help! Even in my case where I don't know if I am on the real drug or a placebo means that simply taking that 'proactive' step means it will be beneficial! This is indeed what has happened!

The question of the level of monitoring with MRI will be down to your neurologist. Have some faith in them! It's not always necessary to have a scan but you need to ask that question to the MS Nurse or neurologist as to wether its needed.

 

Don't get Scared!! You have all these lovely people here to help and making the decision will be easier for that!

 

Lots of things in life are scary, but doing something positive for your MS will be good for you!

 

 

Nick

[lisa]

Hi derby

 

I'm on a 2 year tysabri drugs trial and tested positive for the jc virus and when talking to my neuro about it he told me even if you test posiitive the risks a still low of getting pml he told me there hasn't been a case of it in England and tysabri has been used in England for some years so don't let it worry you to much just hopefully enjoy the benifits you get from it

 

Lisa x