NeuroTalk Support Groups - Tysabri Information & Check In

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I was supposed to have another infusion today, but after several painful pokes, lots of water, and hours of missed work, the nurse told me to go home and she could reschedule me later.

I have left msgs with my neuro and cm.

:confused:

Don't assume it's your veins. I go with the same veins each month, and some nurses just can't put in the IV as well as some others. It's a learned skill! Sorry about all the pokes and no infusion!! :hug::hug::hug:

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Originally Posted by hotfoot (Post 302458)

Quote:

Originally Posted by ewizabeth (Post 302544)

That is one of the reasons that I really like my infusion nurse. She always gets me with one stab. She happens to be an ER nurse at the adjacent hospital, and so maybe that is why she does so well. As Wiz noted, it is a learned skill. Your nurse needs to learn again.

I am sorry that your infusion nurse sent you home without the infusion.

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Originally Posted by hotfoot (Post 302458)

Isn't there more than one nurse available? Is the infusion center connected to the hospital?

I've actually asked for another nurse and THEN a phlebotomist when two in a row couldn't get the stick...and the phlebotomist came in and slammed it home on the first try! ( I go to the oncology clinic at the hospital for my infusions, so there's ALWAYS someone else available.)

Sorry to hear it didn't go well for you. I hope they get you back in ASAP.

I'd be talking to the infusion center director too, to make sure that it is understood that this is a 28 day dosing schedule and that when it is missed, it sets YOU back.

Please let us know how it goes!:hug:

Quote:

Originally Posted by 4boysmom (Post 301906)

I have a question for you long-term Ty users. I never missed one of my interferon shots, and set that as a goal for my Ty use.

My next infusion is July 2, which would put my one after that on July 30. I won't be around that day. It is my extended family's big yearly vacation, and I will be camping starting on the 30th through Aug. 5th.

It is not an option to leave for the trip later. That is not my question.

If you were me, would you postpone the July 2nd shot until July 7th (next time clinic is open) and then just be a couple days long for the next shot (Aug. 6th) or just have the July 2nd shot, and then do the next one 5 weeks later, rather than 4?

Any input would be helpful!!

Can you get the July 30 infusion a day or two early?

I had the same problem this July and last July. Last year, the neuro refused to let me have it early, even by a day or two, and wouldn't let me have it when he wasn't avilable in case anything went wrong.

This year I asked the same question and he said " Of COURSE you can get it a few days early!":confused:

It's worth a shot, and it would keep you on the same schedule.

Hope it works out in your favor! Let us know how it goes!:)

I guess I could ask about the couple of days early. My center only does the infusions on M-W-F. I think I'll at least call today and check with my neuro on that, or do the split. Have the next one a five days late, and then the one after that 2 days late and be back on my Wed. schedule.

Okay, I just decided to do my next one 5 days late, and then the next one will come 30 days after that. Hopefully splitting up the time will be the best route!

Infusion #4 6-17-08

Just an update - All went fine with infusion. I also passed the liver and antibodies test prior to infusion.

Hello, I'm in a dilemma thought maybe you guys could give me your honest opinion. I know I am the only one that can make this final decision and was going to leave my family out of it because if the worst happens I don't want them to feel guilty. I finally broke down and told my sister with the upfront statement that I just wanted her to listen. Listen she did then hugged me and said it sucked that I had MS and more than equally sucked that I am now faced with this decision. Good answer sis!

So, my dilemma is I have been on an interferon (Rebif) which caused me to go into a deep, deep depression with suicidal tendency so neuro switched me to Copaxone and refuses to prescribe interferons for me ever again. I have been on Copaxone 2+ years but I have started having these IPIRs but not the typical one. Mine consist of major pain in back, neck and head that last about 15-30 minutes and then sometimes I have some leftover pain for +-24 hours.

They started to happen with more and more frequency and neither Shared Solutions nor my neuro know of anyone else with similar experience. They have no idea if they could cause permanent damage.

My neuro is leaning towards taking me off Copaxone and starting Tysabri. Now, my dilemma-I am a melanoma survivor. I have been cancer free for 13 years but I remember the fear of dying like it was yesterday.

The recommendation from my neuro is that I have a full body check with a dermatologist, which is scheduled for tomorrow, and then if that is clear go through the rest of the process to start Tysabri.

The month of May was a busy, busy month for me. I haphazardly did my Copaxone injections but this week have started back full time and no IPIRs. I plan to continue with the Copaxone until the decision for Tysabri has been made.

My MS is very steady and I am on disability but I am able to go about doing most everything but with daily pain, cognitive issues that are not noticeable but I know they are there, fatigue, and emotional lability. Thank God for drugs that help me through the day.

So, in all honesty, what would you do if you were in my situation? I know no one can decide this for me but just needed to talk it out and get some opinions from the experts.

Thanks for wading through this small novel.

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Originally Posted by sassy (Post 303812)

I'm so sorry you have to make this decision, Sassy :(. I would maybe wait and see how you do on C for the time being. I know no one is gonna want to hear what I have to say next but I'm gonna say it anyway :). I always havethis niggling little fear in the back of my mind about Ty. :(. Purely because I feel like a guinea pig since there are no long term studies about it's effects. I'm still a newbie to this disease and a lot of things scare me though :). Sassy, this is such a personal decision that I think you might to think about it for a while and keep reading up on Ty. I wish you much luck :)!