Have my first infusion next tuesday dont know what to expect dont i have to have blood test done first? I havent had one dont want to get there and they say i cant have it as no bloods got to travel about 30 miles to the hospital to have it as they dont do it at nearest hospital
Thank u hope it stops the relapses now on 4th since decembet late pregnancy x
Good luck x
Are you referring to the blood test for the JC virus
I think so x
Hi I had the test before my first infusion, but I know others who hadn’t , I would call to make sure, as I thought new rules meant new rules said you have too as obviously it changes the risk. ( I may be wrong on this ) Gray
I had mine last tuesday… drink lots of water theyll want a blood test and a pee test. theyll ask you to walk 25mtrs and thats it. Take something to read youll be there a while. I went at 11:30 didnt get out till 4. There isnt much to it to be honnest
Ok thanks since my last relapse where my legs stopped working i cant walk 25 metres yet
Where is yours catmummy? I am not aware of anyone having to do a walking test at Southampton where I go - all hospitals seem to do things differently. I didnt have my JC test done until my third infusion (found out on my 7th it was positive) although this was 2.5 years ago!! We have our bloods taken every 3 months, a urine test before every infusion, along with blood pressure and pulse etc. After the Tysabri you have a saline flush (i think thats to make sure all the ty is out of the line and in your body) for the first 4/5 infusions they did the flush over and hour and slowly work it down to 30 minutes.
Hopefully you will be in a group of experienced Tysabri people who will put your mind at ease. As above, drink plenty of fluid (if you have to be unplugged to go for a wee then so be it!)
Good luck -
I go to Coventry and I had the JC virus test before my first infusion and now have another every six months. They always take my blood pressure and temperature before and after the infusion and test my urine before. The only time I have had to walk 25 metres was when I said my walking had got worse. So my advice would be, don’t mention your walking. You’ve been assessed as suitable for Tysabri, you don’t want to complicate things.
Norfolk and norwich
I have Tysabri at Sheffield Hallamshire and I had my bloods taken a month or so beginning infusion and also on the day of my first infusion. They take them every 3 or 6 months now (I can’t remember). Like someone else has said, I would recommend giving them a call beforehand about it. You will be expected to give a urine sample before your infusion. You can either do it there or take one with you. They should give you a sample pot to take home with you each time. As others have said, drink plenty of water beforehand. It makes it easier for the nurses to find a good vein (super important for me as mine are terrible!) and should make you feel a bit less groggy afterwards. However, the first few infusions may make you feel awful afterwards, but keep with it as it will get better each time
Also, there is a really good group on Facebook, if you use it. It’s UK Tysabri Users Facebook Groups
Thanks for replies i plan to go to burger king first lol theres none in my area ill ask for a water with my meal x
Good luck with it and enjoy your Burger King!
When I started back in August 2008 there was no blood test for the JC virus.
I can’t remember now if I had to get my blood checked before my first I have to have my blood checked the week before every infusion and get the results back that everything is ok before I get my infusion.
I think now everyone thinking of starting Tysabri is tested for the JC virus to see if your possitive or negative I was on Tysabri 4 years before I was first tested I tested negative and was retested every year I tested possitive in October last year but it didn’t make any differance to me the benefits far out weigh the risks for me I’ll be starting my 7th year on Tysabri this August and relapse free since starting and out of a wheelchair since November 2008
You sound like your doing really well mark do u think tsybari helpd your ms? X
I’m doing so well on it I never dream’t it would be this good when I started I just hoped I could get something that would ease the relapses I was having it was just one after the other I was relapsing every 4 or 5 weeks I never fully recovered till another 1 hit me that went on for almost 2 years I was on Avonex at the time but all that seemed to do was make me ill I heard about Tysabri from a friend in America and begged my neuro to let me try it he gave in and let me have it which I’m so thankful for some don’t realise how lucky they are to get Tysabri in a way i’m lucky i’ve felt how bad MS can be and came back from it. I ended up In a wheelchair with just the use of my left arm my bowels or bladder didn’t work the fatigue I had was a nightmare my eyesight speech and swollow where all affected.
But now I’m out of a wheelchair my bowels work all my limbs work I don’t need classes anymore and I feel healthier then I ever was I even work out at the gym now which took my fatigue away and keeps it away aslong as I exercise my speech and swollow are fine and i’m pretty strong and fit I can’t run and can’t walk anymore than a mile if I really push myself but I’m happy and that will do me I still self catherise but If thats the only thing I ever have to worry about I’ll be more than Happy.
It wasn’t a quick fix and getting to where I am today didn’t happen over night I always tell people starting Tysabri to have patients and give it time.
Do u get side effects from it thats horriblr glad your so much better now i keep relapsing too i was admitted the hospital for 9 days in april for a major relapse the neuro came to see me on ward and arrangrd mri of my spine and it was so attacked he thought i had devics disease so arranged a lumber puncture and bloods he said if it comes back ms id have infusions as the injections wont work as soon as bloods came back ms nurse rang me and told me the neuro had arranged tsybari got letter the other day saying its tuesday im nervous as have a 3 month old (which is why the ms has gone mad) and a 4 year old so cant afford to be anymore ill than i am atm x
the only side affect I used to get was I used to get really tired after my infusion which could have lasted 24hrs but that went after the 3rd year now I have my infusion and I’m full of energy and straight in the gym within 20 mins of getting my infusion.
I know it can be scary starting Tysabri you won’t know what to expect but come Wednesday you’ll wonder what it was all about. If I could gave you one tip make sure and drink plenty of water the day before and leading up to the infusion stop an hour or so before your infusion or you’ll be bursting for a pee in the middle of the infusion lol the reason I’d tell you to drink plenty Is it really plumps up your veins and should make it easy for them to find a vein and it should stop you getting a headache after I never had one but I’ve heard others side they do x