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?

Hi Sally, thanks for checking in and asking! I love my Tysabri. I haven't had a relapse yet since my diagnosis in Sept. 2007. I started Tysabri in June 2008. I attribute my quiet MS to the drug. I feel fortunate --tested negative for the JC virus antibodies. But I saw my doctor last week and it has been 6 months since I got tested. He wants me to have a second test. I have to confess it scares the crap out of me, to have it again! If I do test positive this time (either because the first one was a false negative or because I actually caught the virus since then) I will be switching to Gilenya. The negative test gave me such incredible peace of mind. I stopped worrying about PML and stopped scouring the internet obsessively for Tysabri updates. I don't want to go back to that.
Cheers!!

I'm doing awesome on Tysabri. I've had my diagnosis for ten years. I started taking Ty four years ago. My fatigue is largely gone, my strength has returned enough for me to train a horse, work, raise my daughters and separate from a marriage that had become abusive. On the rare occasion when I remember to pray, I thank god for modern medicine and for Tysabri and for the full and vital life I've been blessed with.

Katty

I'm so sorry I've been MIA for such a long time!!!!!!!! It's been one thing after another for me

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

Hi my name is Kathy, just dx with MS at age 64, but had it for years, My nero is going to see me on Tuesday to talk about meds. One he wants to talk about is Tysabri,he gave me the JC test but we have not got the results back yet. The doctor wants me to come in and ask questions, he says anything I want to know about treatment and let him know my systems that are my biggest concern for me. I will do some searches on Tysabri and read your post. I have lots of brain lesions and bad legs. Now I seem to be tired all the time, but manage to go to work, Would like to know if this drug helps with these types of systems? Kathy

My name is Kathy, I am 64 and was just dx with MS after years of not feeling good. My nero is going to put me on Tysabri. What should I expect for the first visit? I have Antena insurance I hope the help with the program. Kathy

Sorry I have been among the missing! It's a combo of work and the season! Hope everyone's doing well.

@Linda - Yippeee on the negative!
Glad to hear that! I predict you are one of the people who are in that percentage of false positive and the 11/10 is the bad one...
Let us know how the doc talk turns out.

@Natalie -did you get your results back yet from your second test?

@Kathy (kadi1805) - Hello and welcome to the thread! Sorry it took so long to answer you, I've been missing for a bit!

Tysabri is designed to slow the progression of the disease and reduce relapses in relapsing/remitting MS. It's an infusion that is administered every 28 days via IV in a certified infusion center or your doctors office in some cases.

Some people who are on Tysabri have a return or an increase in some areas of function, usually because the drug stops/slows the inflammatory process and allows healing to take place.

Others just maintain but report no further relapses or reduced relapses.
Some have no sign of enhancement or new lesions.

Every doc is different in their monitoring of their patients so I can only speak of my experience. My doc saw me every three months when I started until he was satisfied that the drug was working for me. He did an MRI at 6 months and again at 1 year. After that I don't think I had another MRI for 18 months, and that was just to do a check since my insurance paid for it. I now see him every six months.

Insurance is a whole different ball game. There is no set answer for anyone since everyone has a different policy/company and different benefits. The monitoring program (TOUCH) will be in touch () with you and you can ask them to coordinate your benefits or query your insurance company and let you know how it will be paid, but it's usually covered. If they come back and tell you that there's a problem, they will work with you and your doc to overcome the hurdles. They have a program as most drug companies do these days that will help you with the cost of the drug if you qualify, and you may be able to get reduced cost from your infusion center if you qualify.

First visit- vitals taken, then they are supposed to ask you 4 questions and give you a brochure that explains the questions and what you should be reporting. They want to know if you have had any changes in meds, have taken any steroids or immune suppressing drugs or if you have had any changes.

They do the IV access and they run the bag of Tysabri mixed with normal saline fluid over the course of an hour and then they are supposed to watch you for an hour to be sure you have no adverse reactions, and then off you go. Many people report being tired for a day or two after the infusion. Some don't have any problems, some do. In my case, the whole procedure takes about three hours.

Be sure to drink a lot of fluids the day before and prior to your infusion so you are well hydrated so they can find a good vein. Bring something to do (reading, knitting, etc) since you'll be there for a few hours. I usually sleep through mine since I work nights and I never get enough sleep!

If you have any reaction, your doc may prescribe benadryl and tylenol. Everyone's different and so are the docs, but it's become standard to try and treat any allergic reaction before tossing in the towel on infusions.

You can read back through the Tysabri posts and see that each of us have a different course. Come on back and ask any questions you have on your road through this and there is sure to be someone who can help you with answers. Let us know how it goes for you!

(that was a long post!)

Merry Christmas, Happy Hanukkah, Happy Kwanzaa to everyone!!!

Thank you for your reply. I talked with my nero and we are going ahead with the ty med infussions. Some time in January waiting to hear from the insurance company, hope you all have a Merry Christmas Kathy

Happy New Year!

I had #60 on 12/29/11. As usual, no problems, no concerns.

For New Years, I took down my wall of Tysabri. I had 60 vials and boxes stacked up on a shelf. I started keeping them back in 2007 when I started Ty, because we were tracking the vial code numbers. The wall became unruly and refused to stay up, and the tracking stopped long ago, so down they came. Somewhere out there, a transfer station attendant is scratching their head and wondering what the mess of little glass bottles were for!

Hope everyone is doing well!

Congrats RW!!! . Hard to believe you have hit 60!

I'm battling shingles (for latest info see my post in general forum). I'm a little freaked because I have to delay getting my infusion tomorrow morning and it's the 8 week mark. I fear a relapse if I go beyond 8 weeks. But shingles came back after I stopped treatment.