I had my 65th infusion on May 17th and celebrated 5 years on Tysabri and 5 years w/o a single relapse on May 25th. Busy working here but had to stop in and post my update!
As usual I have more to say but no time right now! Hope everyone's doing well!

I went to see new neuro and she wants me to start ty. Is there any pain?? Of course she said no but I hate needles. What can I really expect? What's the down time after the infusion? I know that I won't really know until I experience but any information would be greatly appreciated.

Hello

I am up to about three and a half years on Ty, and I have to say that although the cannula insertion can be a little yucky if they have trouble finding a suitable vein, there is no pain with the infusion.

As far as down-time goes, no problem at all. I just jump in my car and drive myself home straight after the infusion, and apart from feeling a little tired that night (which could also just be because I was tired anyway) I am fine.

One of the ED doctors where I go offers a little local anaesthetic if he thinks it might be a little tricky to get it in. He is my favourite

Good luck and let us know how you go

Cheers

Lyn

I just had #34. Overall I will have been on Ty for 4 years this July. Thank god for this drug! Now that my infusion visits are classified as a "hospital visit" since they built a new infusion clinic I have to pay more. But Biogen stepped in and Is charging me something like $10 for the drug and no more than $150 for the infusion visit. Averages out to $80 a month since I go every 8 weeks. I used to pay $30 office visit co pay and then $125 for the drug...so it stayed relatively the same. Yeah! Every 8 weeks certainly cuts down on costs!

In the meantime I'm trying to recover from a small pneumothorax (10% collapsed lung) I got almost a week ago. I could still get Tysabri but man it hurts. Oh, and did I mention my collapsed lung was caused by the breast surgeon taking a biopsy of a lump (which came back benign) and she punctured my lung with the needle!!!!!!! Tomorrow I see a pulmonologist and may have to go in the hospital to get a chest tube put in as it is not getting better.

If it's not one thing, it's another, right?

PS: I discovered you can't fly with collapsed lungs so I have had to cancel two trips already.

Sheesh, Nat, thank heavens the biopsy was negative for cancer. My Mom had a small cancer on one lobe of her lung and when her lung was pierced and collapsed, the air leak spread the cancer throughout her body.

Get that leak fixed ASAP!!

I've had 68 infusions-no pain except for a rarely difficult IV. I drive myself home and then play cards
Good luck !

Natalie, so sorry to hear about the lung

RW, happy for you-#65

Linda

Sally. That's an awful story!!

Oops, I'm sorry Nat, at the time, it just made me so mad. If they hadn't been so careless and then let it go on so long, she may have lived to see some of her greatgrandchildren.

Today was #69 for me
Other than a headache, which is rare for me, all went well !
Linda

Hi all !
Thurs was #70-no headache this time I am this VERY HAPPY CAMPER
A ms neuro at Georgetown U did a trial on getting infused 8 weeks not 4. He said everyone on Ty after 2 years should go to 8 wks whether jcv+ or -. I am going to check with my neuro in Aug-he's already told me every 4 but, now this new info ...I'll see what he says now ??
Linda