I had #7 last week.
I have noticed a big difference in bladder function and my balance is much better. I was using a cane 24/7, now just when I am in crowded or busy places.My walking is definitely more stable, however, I really haven't noticed any change in endurance.
I have no reaction what so ever with infusion. I am just very sleepy the day of and some the day after.
The exciting thing for me was the MRI after #6.......it was stable and NO disease activity. This is the first MRI since 2003 that has not had enhancing lesions!!!!!
The cost is the only thing that will make me stop. I just have to decide how much I want to invest in this. With the co-pay I have, I am not sure how long I can keep doing this.............Barb

I am so sorry to hear you are STILL sick, Sheena! You haven't had it easy. :hug:

Will Hopkins still do the procedure with you having so many infections? I have been keeping up on the posts from people who have had it, but I haven't heard about how they deal with folks who have chronic infections and illness before procedure, since they take out immune system before actual procedure, and I'd be interested to hear what information you have so far.

I hope things ease up for you! Let us know how it goes!

Good to hear the bloodwork is perfect!

Tell them you want MORE warm blankets and have them warm the IV saline! They CAN do that. We used hot packs to warm it in the ambulance on cold nights!

The fungus is ewww and it is hard to clear up!
Good to hear from you! Let us know how it goes for you!:)

Barb, wasn't it great to have a good MRI?? I was dancing after my 6 month MRI. I go for another next week, first since that 6 month one and I cannot wait to see what it looks like!

Have you checked into getting help with your co-pay? Vic has some resources that he has compiled, that you may be able to get some help from. Maybe he can jump in here and give you his list.

Glad to hear things are going well for you! Keep us posted!:)

I have talked to Biogen, the infusion center, my insurance co. etc. etc. and it looks like as in Vics situation, it is mostly the infusion costs not so much the drug cost. The hospitals and infusion centers are going to make this drug unavailable to the average person and that is very sad!! Barb

I don't have any trouble the entire hour I get the infusion. It starts five minutes after it has stopped. I start shaking, and then I tense up so I end up with a headache and just miserable for a half hour. I wear sweats, fuzzy warm socks, and take a down comforter with me, even when it was 90 degrees outside! I did use a heating pad last time, and I think Wednesday I'll ask for that during the entire infusion.

So do you really think heating the solution would help? The only bag I get is the actual Ty. I don't have any saline in addition, well I guess they do squirt one syringe in at the end to get all of the med out of the bag. It isnt an allergic reaction, because 2 benadryl and an aleve an hour before make no difference in the reaction. It happens with or without the pre-medicating.

Barb,

These funding sources can help you with your co-pay:

Partnership for Prescription Assistance (888) 477-2669
The Medicine Program (800) 921-0072
NeedyMeds: (978) 865-4115
National Organization of Rare Disorders (NORD): (203) 744-0100
Rx Council (866) 794-3571
Alternative Funding Group (866) 426-2906
Patient Access Network (866) 316-7261
Bridges to Access (866) 728-4368
Rx Outreach (800) 769-3880

-Vic

I also experienced a similar problem while on ty except I was cold and shaking during the entire procedure. Premedicating with benadryl did not help. I also experienced other reactions. Have you been tested for antibodies?

I was referring to warming the saline solution.

I get a whole bag of saline along with the Ty. It's started before the Tysabri infusion, it runs during the Tysabri infusion and it continues to run after the Tysabri infusion until my hour of observation is up. I finish the bag during that time. I've heard some folks don't have a saline infusion with the Ty and have a hep lock TKO after the Ty, but that is not what happens with me.

The Ty solution I get is always cold when it comes from the pharmacy. I check the bag when it comes to make sure it is what's ordered, and I know the drug in the vial is refrigerated during storage, cause I get the vial and the box from the pharmacist at the hospital when the Ty is delivered. The saline solution is NOT cold when I get it, I always check that too, make sure there are no floaters in it and that it is clear, etc. so I do hands on to both bags of solution. ( I can't help it, too many years of doing it:p)

I don't know if it's just the Ty but I do the same thing with IVSM! I am shaking and cold the entire 2 hours of the infusion. I am also covered with warm blankets and wearing warm clothes.

I did find that if they keep a warming pad on the infusion site, for some reason, it does help. I have seen people in the infusion center who are wearing shorts, tank tops and sandals and not cold at all! And here I am wrapped up like I am at the North Pole! And still shivering! Go figure! I think it's an MS thing!

:eek:

Okay, this is what I'm going to try tomorrow. I'll keep the heating pad with me throughout the entire infusion, and especially for the last bit when the syringe full of saline is going through my veins.

I'm a little confused why some get a bag of saline along with the Ty! I come in for the infusion, they ask me the questions, she puts in the iv thingy usually on the back of one of my hands (I have good veins!), she calls the pharmacist, he brings me the bag of Ty and I check to make sure it is in my name, she hangs it up, hooks into my handline, and sets the machine to start giving me the drug.

The drug is then given to me for an hour. She comes in and squirts a syringe full of (I'm guessing) saline to clean out any remaining med that may be in the bag, that goes through my iv, she clamps it off and unhooks the line, but leaves in the needle in my hand(MS moment can't think what that is officially called, so it is the iv thingy :cool:), Then within 5 minutes I'm a shivering and a shaking and feeling horrible. Until then I'm great! And within about 1/2 hour, I began to feel better. I'm generally tired the rest of the evening, though. I try t o have the infusion later in the afternoon so I can go home and rest after.

I have not been tested for anti-bodies. I couldn't even tell you what they tested in my blood-work, but my neuro is big into giving those talks for Biogen and an MS specialist in my town, and he is very careful with all things Ty, so I'm sure he's testing for whatever could be problematic.

So is this procedure what everyone else goes through?