Originally Posted by SallyC

How are you all feeling day to day, on Tysabri. Especially those who have been on it for over a year or two. Have your MS sx deminished, gone away, a little better, a lot better or NOT?

Do you have side effects from the TY and if so, are they really managable? Do you have the JCV antibodies? Are you afraid to take TY, but because of your great results, you are willing to take the risk?

I hope you don't mind my asking. I think about you all often and come to read here, to see how you are doing, but usually, your just counting off your infusions. How do you really feel?

Originally Posted by Natalie8

Wow Linda! You were negative on the second test? I hope the first was wrong. It must alleviate some of your anxiety. What did the doc say?

Originally Posted by SallyC

How are you all feeling day to day, on Tysabri. Especially those who have been on it for over a year or two. Have your MS sx deminished, gone away, a little better, a lot better or NOT?

Do you have side effects from the TY and if so, are they really managable? Do you have the JCV antibodies? Are you afraid to take TY, but because of your great results, you are willing to take the risk?

I hope you don't mind my asking. I think about you all often and come to read here, to see how you are doing, but usually, your just counting off your infusions. How do you really feel?

Originally Posted by shayna

i'm so sorry i've been mia for such a long time!!!!!!!! It's been one thing after another for me hi my name is kathy from nv.

Sally, i had infusion #52 yesterday. That means that yesterday and today i have my "normal" side effects: Headache, fatigue, stomach ache and nausea. But, i know i'll feel better in a day or two. Ty has done wonders for me since i'm no longer in a wheelchair and i'm able to walk ....as well as run a bit and play with my grandchildren.

I was tested again for the jcv antibody and i received the results yesterday...it was negative ....yeah when i was leaving the office after my infusion my neuro told me there are studies being done to try and replace myelin. Yesterday was a great day for me. The biogen rep was in the office during my infusion and he came and talked to me. I've been so worried about next month and turning 65. It means that i will go on medicare and so far i haven't received any info from medicare or the secondary insurance i should have he told me to call biogen's 800# and speak to the district manager for nevada. He assured me that biogen would not let me be dropped from the touch program simply because i may not be able to pay the 20 % that medicare does not cover.

When i called biogen today i was told that they will try and do everything possible to see that my next infusion isn't delayed because of the transition in my medical insurance. The only real hitch is that i still have not received any info from my secondary insurance. Biogen told me to call their office again as soon as i receive my info. They are going to contact medicare in the meantime and see what they can do. Apparently, there are senior citizens who pay $10 for each infusion and biogen takes care of whatever amount their insurance does not cover. Biogen really needs to let more people know about this!!!!!!!!!!!!!!!!! I've been so stressed waiting to hear from medicare and my secondary insurance.

2012 is going to be better than 2011 !!!!!!!!!!! It has to be...lol 2011 was difficult not because of m.s. But, because i can't seem to stay infection free: Bacterial, viral and fungal i had shingles a few times last year and that delayed my infusions slightly. The topical yeast infections and my constant sinus infections don't delay my infusions they just make me miserable...lol

for anyone who is having a problem with their infusions the only thing i can recommend is being very well hydrated. Not just the day before the infusion but, also prior to the infusion as well as the remainder of that day. I've found that the more hydrated i am the easier it is for the nurse to hit the vein on the first try. Prior to my infusion i try to drink at least 4-6 glasses of water. After the infusion i drink as much water and broth as i can get down. It really helps with the side effects ...at least for me. I still have side effects but, they are not as severe. I've also learned that tea is a big no no the day prior to an infusion as well as the day of an infusion. It makes me more dehydrated and no amount of water seems to help i learned this the hard way because 2 months ago the infusion nurse almost sent me home after 1/2 hour of trying to decide whether or not she would be able to hit the vein. I didn't want to leave without my infusion so instead of having her gently touch the vein to make it pop up i started pounding on my arm and that sucker finally came up enough for her to start the i.v. As much as i love tea i avoid it now prior to an infusion. I learned after yesterday's infusion that tea is not a good idea after an infusion. I was hoping a glass of tea would help settle my stomach. It didn't however, it did keep me awake and i really wanted to fall asleep.

Congrats to those who have tested negative for the jcv. Anyone who is suffering with shingles i can empathize with you. Try not to let it get you down. Ask your infusion center if they will keep a vial in their office for you so that you can get the infusion as soon as your neuro gives you the ok. They must have ordered it in advance. So, it seems silly for them to return it to biogen.

Happy 2012 everyone.

Hugs,
shayna