A day in the life of Tysabri?

[Hawkgirl]

Can anyone give me an idea of what life is like when you're on Tysabri? I know I would go for an infusion once a month. Do you have to have a port? Is your immune system quite low so you have to use that hand gel all the time and wipe the cart handle with a Wet One? Do your current symptoms improve? (I know it will be different for everyone; just asking for your personal experience.)

Will I be incapacitated for a day or week after the infusion, or will I be amped up?

I have pretty much decided in favor of doing the Tysabri, so I want to know what it will be like. I hated Betaseron: the flu-like symptoms that would clear up just in time for the next shot, the painful little knots from wherever I did my shot, having needles in the house and needing to keep them away from the kids. And most of all, never being able to just forget for a while that I have a disease. I'm hoping Tysabri will not be so intrusive.

[0485c10]

You know how it goes, its different for everyone i can just tell you my experience.

i had a "problem" that i was restricting fluids to control incontinence. and some how tysabri made me more tired when i did this? it was okay while i was not using tysabri but it made me very tired when i was using tysabri. i think tysabri somehow mess with a persons fluid balance?

When i get an infusion they always ask the 3 questions i have memorized..1.have you had any new or worsening symptoms since your last infusion? 2. have your medications changed since last time. 3. have you recieved the phamplet on the risks of tysabri have you read it and do you understand it?

Then she takes my temperature, pulse and blood pressure. i noticed when my bp is lower than average for me i was so tired. So i began drinking more all month and that helped with the fatigue after the infusion.

for a few days after the infusion i am pleasantly relaxed and i like to sleep more than normal for the first few days after the infusion....i think many people get stressed fighting this relaxed feeling by not scheduling time after the infusion for this...not that i can't do something i need to do but i am so relaxed i would prefer not to go running around if i can avoid it.

the first infusion i felt so much better i over did things the first week and then regretted that i over did things the next 3 weeks---so i always advise people new to Tysabri to consciously pace themself at first, in case the body doesn't do it for you. like i wish i had paced myself the first week.

it was about 6 months before i noticed continuous improvement..for the first 6 month it varied alot and caused me some depression at times when things were so much better then not so much better--at about 6 months things steadied out.

I have been to 2 infusion centers. No port i have easy to stick veins, although some with more difficult veins to stick get ports.

the first infusion center ran a small vial of tysabri over an hour, then had me sit for an hour before i could go.

the 2nd infusion center runs a small vial of tysabri over an hour, then switches the vial of saline, no additional stick just swapp the tubes. This infusion center runs the vial of saline over a half hour then lets me go...but i only have to stay for a half hour after i have had 12 trouble free infusions, i think they will make you stay the full hour after the infusion until you establish your track record for receiving tysabri.

at your last appointment with the doc when he orders tysabri for you, he will have to go over the risks with you and then both he and you will have to sign the form in the presence of eachother that he has gone over the risk with you.

i have a chroniclly stuffy nose, so i often take a claritin D for that. if a person gets an infusion reaction they give the person benadryl,sudafed or claritin d...so i am not certain if that was why i had no reactions to tysabri but it worked so well i often tell people i did that and they might want to consider trying it. make sure you know how you react to one of those before you go for your infusion, maybe try it the week before first.

and before my first infusion my mind was just racing the night before worrying about the infusion that i think i only got about an hour of sleep the night before--now if i'm still awake with my mind racing past midnight i take a benadryl as a sleep aid. that helps me too, but i no longer get anxious about the infusion. I just won't let myself get insomnia over it anymore.

would your husband drive you to the infusion? might not be a bad idea to do until you know how you respond to tysabri. I only live about 3-10 city miles from the infusion center and i have had no difficulty driving myself..

although one of the first infusions between the insomnia, low bp from restricting fluids i did have a hard time keeping my eyes open while i drove. i was glad when i made it home.

[Wellnesschic]

First let me say that you are awesome to have three kids!

Tysabri has been excellent at stabilizing my MS, excellent. I am so glad I made the choice to start taking it.

I do have a port, it is a PowerPort, which is now 3T MRI Magnet compliant, so you can have 1.5 and/or 3T MRI's, where you couldn't do the 3T a year ago. I would highly recommend the Port. It has made infusions much more tolerable (no more searching for veins etc..) Keeping in mind you will be on this med for a while, eventually your veins will wear out. And, it takes half of the time for the nurses to prep you. Plus, they can draw blood for labs direct from this port. Also, the PowerPort does NOT need to be pushed with heparin (one less drug is always good). Other than the Tysabri, your Port will be flushed with saline and can stay in place for as long as 15 years.

For me (and everyone is different). I get extremely tired. my arms and legs hurt, and I just want to go lay in bed afterwards. I usually need to take it easy for about two days after the infusion. I get my kick back in about 5-6 days. I have chronic skin problems from Tysabri. This is possible but also very rare. I just finished up with a nasty bout of some form of dermititis. However, I'd rather have this I believe than UTI's. Also, I do get headaches, and I am hypersensitve to the drug (hence the skin issues). finally, my blood pressure drops very low, today, it was 92/66 after the TY. I pre-medicate with Benedryl before the infusion, and take Allegra for the next 5 days afterwards (again the skin thing, which usually doesn't start until about 5 days after).

In terms of infection precautions, I don't do anything different than normal. I do wash my hands a lot, or take hand sanitizer with me if there is no where to wash my hands. I get a flu shot, and try to stay away from people who I know are sick. Otherwise, I travel a lot, so there isn't much else that I can do.

Good luck with your Tysabri. I hope it is a great to you as it has been to me. Also, you didn't mention PML, so I will. Don't get too hung up on this. Yes, it is a risk that I am sure your doc told you all about. PML is rare, and if your physician is doing what they should be doing, and you are doing what you should be doing in terms of monitoring your own MS symptoms, then it shouldn't be something to worry over. Plus, there are are a bunch of other drugs that people take today that cause PML (you just don't hear much about them). Tysabri has been a miracle drug for me, and my hope is that it is altering the future of my MS for the positive.

[0485c10]

One more thing from me--like i wrote and Well...indicated is an issue for her low BP which i believe is from fluid balancing in the body, why else would many infusion centers follow the TY with saline?

But I do want to say I am careful that my infusion happens AFTER my period. Both are on about 28 day cycles so they stay the same once i started. Ty with the saline just causes me a heavier flow and once cramping when i don't normally get cramping with my cycle. I have gone for 5 week infusion just to get the 2 cycles lined up where it is best for me. And it is best for me if my Ty infusion happens just after my cycle so TY is at its lowest concentration when my next menstrual cycle starts..

when i started TY i was excited to start. the doc said after a 30 day washout period. 30 days exactly after i stoped betaseron i made my appointment for TY--which happened to be during my cycle, i regretted that. since they are both on the same cycle they stay till i changed mine after about nearly a year when i finally realized it was TY causing my period to be more difficult..

as always that is MY experience not sure if you will have the same effect?

[0485c10]

Maybe plan on stopping betaseron so the washout period ends just as your period ends--don't extend the washout period with out meds longer to get the ty cycle lined up to your menstraul cycle. they blame the first relapse after starting tysabri to the damage that was done by MS during the washout period when a person goes without meds--no sense in extending that time. my last betaseron shot would have been a few days before my period then the washout period for 30 days which is what my doc wanted then i would have scheduled my 1st infusion just after my next period ended.

[Hawkgirl]

My doctor had told me at my last appt. to stop the Betaseron, which I did with glee. I have been so happy this month, I think partly because of not having to do the shots every other day. And the stress of trying to remember which day to do the shots.

The clinic called yesterday and I am NEGATIVE for the JCV! So I'm in. I am so happy to hear that people are getting good results with this med, because I feel like I'm slowly losing ground. I have been sort of amped up and extra aware with this Lyrica, and I have noticed things more than I used to. I've noticed all the little "shifts" we MSers do without even noticing, like walking down the hall with my hand on the wall to keep me from tipping over, or the little tricks I use to avoid needing to bend my head down, because that always makes me fall over. So I'm glad if the Ty will put the brakes on more loss. Can I call it "Ty" now? Am I in the club?

Well, it will depend on the cost. I've got to get my insurance situation cleared up, and I'm not clear on whether I'm in a study and if that makes the treatments free.

Thank you for the advice about Ty. I will try to start well hydrated, and try to get my ... uh ... stuff together so I can rest for a few days afterward. I'll have to try to figure out when I get my period, too. I have so much trouble with that. I never remember when I had it, and when I do get it I forget to write it on the calendar. It takes me by surprise every month.

Also I have a pretty big problem with incontinence, so I'll have to think about that if I'm trying to stay hydrated.

I wonder how the Ty will mix with the Lyrica? Could be a wild ride. I'll keep everyone posted, because I know you're all very interested in me. At any rate, *I'm* pretty interested in me.

All these things are very strange with my DH. When I got the call that the JCV was negative, he had no reaction. I was excited and happy, but he was just like, oh okay. He seems sort of scared of me and angry at me a lot lately. I'm sure it's because of the Lyrica, making me so crazy. It makes me wonder, did we really know each other very well when we got married? I feel like I'm returning to my old self, and it occurs to me that DH didn't know me back then. He's only known the sick, tired, washed out version of me, who is always very sober and weak. Maybe he doesn't like the real me. Maybe he's scared of me losing my marbles. Maybe he's scared I'll dry up our bank account or hurt the kids. Surely he knows I would never do those things. All this worries me.

Welp, anyway, I will be finding out when/if I start the Ty next month!

Wellnesschic, where do you have your port? Is it difficult to care for? Do you have to keep it dry or covered over? I've sometimes had a butterfly valve put in for IV steroids, and it was very intrusive. Like, a big tube dangling off my arm, and I had to keep it taped up and covered with a bandage-type thing. Is that what a port is like?

Thank you guys (gals) for the info!!

[lindaincolorado]

Hey hawkgirl, on Dec 2nd I will get my 62nd infusion
I do not have a port and have been told I am a difficult stick. some nurses, of course, are better than others. I hydrate and keep my arms/hands warm.

I have not had side effects

I am so happy I am on Tysabri. It has kept me from progressing (I may have to give some credit to Ampyra-I've been on it 4yrs, trial and now). Between 4-6 infusions I noticed better balance, less fatigue and more stamina-these have gotten better and held-thank G-d!!! My MRIs have shown no new or active lesions !

All in all Tysabri has been a gift to me.

Good luck and best wishes

[0485c10]

All these things are very strange with my DH. When I got the call that the JCV was negative, he had no reaction. I was excited and happy, but he was just like, oh okay. He seems sort of scared of me and angry at me a lot lately. It makes me wonder, did we really know each other very well when we got married? DH didn't know me back then. He's only known the sick, tired, washed out version of me,w. Maybe he's scared All this worries me.

DH has always known you needed him. i think it sounds like you need to reassure him that he will still be needed by you & just like you are coming to this site to know what to expect, let him know how he will be needed, what he can do, should do...like let him know you are likely to be very tired after the infusion and keeping the kids occupied while you snooze for a few days after the infusion would be most appreciated and all other things you can think of that he could do. don't make him guess.

when a spouse loses a large amount of weight, i have heard the other spouse feels threatened that the spouse who is looking good after losing weight will go out & get laid.

[Scooter24]

I have been on Ty for 1 1/2 yrs, as others have said it is a miracle drug for me, I have no problems with it except now and then a couple of days before my infusion I feel like my batteries are running low, I just had infusion today and I did feel a little low today , if it goes as normal I will be fully charged by tomorrow afternoon.

As a note to all, they had a problem sticking me today which they don't normally, I fell last week and bruised my ribs so I have been taking Ibuprofen 600mg regularly since then, the nurse said that is why they had problems as it makes your viens soft? and told me to try not to take too much of it a few days before infusion. Had never heard that one before.

[Wellnesschic]

My port is located under my skin, right side of my chest just beneath my collar bone. It is visible, more than I understood it would be, however I really don't mind it, and actually most people don't even notice it unless they have or had one themselves. It is SO WORTH IT!!

yes you are right the butterflies are annoying, and the Port is nothing like this. Once it is in, there is nothing that you need to do with it, unless you are accessing it less than once a month (then you just need to have it flushed with saliene). If you are on TY this won't apply to you. For your infusion, nurses clean the area around the port to sterilize it, then there is a special type needle that is used, you feel a slight pinch with the access the port with the needle, they check the blood return and you are set to go. When they are done, you exhale and they pull it out, put a bandaid over it and home you go.
And the Power Port can be used for infusions of most all drugs (even steroids), as well as CT Scan and MRI contrast fluid. The only person who can access it is an RN, however if you are in the hospital it sure makes life a lot easier.
Good luck!!

[KyleW]

Hawkgirl - Yesterday I had my first Ty juice box. It was a breeze! No port, no after effects, no nuthin' It was as if it never happened.