Cosmobirdy's first Tysabri infusion

[shoshin]

Cosmobirdy (Rita) is having her first Tysabri infusion tomorrow. Please keep her in your thoughts.

sho

[Cosmobirdy]

Ok...I'll keep you posted... :)  And always feel free to PM me and ask me anything, OK?  I don't ever have a problem with that....

I'm feeling OK today.  Headache was mostly gone by Saturday, and the nausea only lasted a few hours or so.....and like I said, it wasn't bad anyway.  Otherwise, no flu like symptoms at all.  So....at least things are off to a good start....:)  Talk to ya later...

Rita

[Deb61]

I would love to hear updates on how its going--Tysabri is the next step for a lot of us.  I want to hear the good, bad, and the ugly.  My sister is having a tough times of things (as I mentioned to you) and would love to help sort out if its the medicine or not.  She sees her neuro tomorrow and will be getting an MRI also.  

How are you feeling today?  Do you have any remnants from that headache you had?  Did you have any flu-like symptoms?

You have a wonderful weekend, too!

Deb

[Deb61]

I would love to hear updates on how its going--Tysabri is the next step for a lot of us.  I want to hear the good, bad, and the ugly.  My sister is having a tough times of things (as I mentioned to you) and would love to help sort out if its the medicine or not.  She sees her neuro tomorrow and will be getting an MRI also.  

How are you feeling today?  Do you have any remnants from that headache you had?  Did you have any flu-like symptoms?

You have a wonderful weekend, too!

Deb

[Cosmobirdy]

Thank you....:)  But I don't have nerves of steel, lol.  It's more just a case of desperation, I guess - and an unwillingness to just sit here and hope things won't get worse.  After the first line DMD's, there aren't a whole  lot of options for us these days, and that's just the unfortunate truth.

I asked my neuro when I was there, how long before we will be able to tell if the Tysabri is working or not?  He said there is just not enough clinical data to know.  He said "Well, right now this is it....this is all we really have for aggressive MS, so we need to just watch and see how it goes."  Then he looked kinda surprised - I don't think he meant to say that out loud, in his big boy voice, lol.  Obviously, I had already assumed that's what I was, but it still sort of stung to hear it out loud from him, you know?  

If you guys really want me to, I can try to post updates on what is gonig on with me - I doubt it will be anything too dramatic at first, so I hate to disappoint, lol.  But if there are enough people interested and who feel they may benefit from the info, I'd be happy to help.  I know I have benefitted greatly from being in contact with numerous people that I have found who are already on the path ahead of me... :)  Most do well, a few do not - you just hope you wind up in the first group, lol.

Let me know what you guys think about the update thing......hope you all enjoy the rest of your weekend!

Rita

[Rena705]

Wow...you must have nerves of steel Rita!  I am so proud of you to come through that first infusion and still feel up to letting us know how it went!  I really hope that this will bring you the relief you deserve honey and you will no longer feel so "crappy"!  hehe

We will be here if you need us ok and in the meantime, it would be interesting if you feel up to it if you could give us possibly a week by week update as to any changes you are undergoing as a possible result of the drug?  It would be a valuable piece of data that I am sure other members in the future could look at and get a first hand feel for what the results of this drug may or may not be.  

We will be thinking of you honey and as I said before...I hope that this will bring you the relief you need!

Lots of Hugs,

Rena

[Cosmobirdy]

Thanks....I really felt all the good thoughts and prayers from here, with me while I was getting the first infusion... :)  I feel bad that I don't participate here much lately, cause I feel so crappy.  I hope things may turn around by the end of the year, once I have 2 or 3 infusion under my belt.  I have always said...this is an AWESOME group, and such a wonderful source of support and laughter and shared information and experiences.  I feel very honored to be a part of this community....:)

Rita

[Lulu54]

Hi Rita,
did you just hear the collective sigh of relief from here?  Lots of people were wondering how you did and  were "with you" on Friday.  Thanks for checking in and letting them all know how it was.

Stay in touch, ok??
Lulu

[Cosmobirdy]

Sorry I didn't get back to you sooner - have been dealing with some other major issues that suddenly came up here with one of the kids.  (it never rains, but it pours..)  I appreciate all the notes that were sent via PM also, and will respond as soon as I can to all of you.....right now, I am exhausted....

The infusion itself went fine.  The neuro starts the IV himself - I think it's one of the stipulations of the TOUCH program.  It took about an hour, and then you sit around for another 45 minutes or so to be sure you don't have an allergic reaction.

I got a little nausea, but not as bad as what I usually have each day till about noon anyway.  I did get a headache, which started around the end of the infusion, and just gradually ramped up.  By the time I got up from a nap about 5 hours after the infusion, it was kinda wicked.  Next time I am going to try taking a Claritin-D an hour before the infusion - it's one of the tips I've gotten from the folks I talk to who are already on it.

So, now we just wait and see if it works...I'm crossing my fingers this will turn the tide.  Thank you all so much for all your caring and concern - I really appreciate it, and it means an awful lot... :)

Rita

[Momzilla]

So.....How'd it go?

Princess*

[yorkieville]

Hi, Rita.

I have been out-of-town for a few days. You are in my thoughts and prayers, as always.

Hugs,
Sheila

[Cosmobirdy]

Thank you all for your concern and good wishes and prayers..... I really appreciate all of it!  I had no idea Sho was going to post this, lol.  Thankfully, someone tipped me off - I haven't been on the forum much lately at all.  The past 2 weeks especially have been kind of bad....:)  I go later this morning, and I know I will feel all the good wishes from everyone right there with me!  I truly don't expect the infusion to be very eventful....I think it will just be more of the emotional thing.  Thanks again - you guys are wonderful... :)

Rita

[monotreme]

I will be praying for Cosmobirdy.  I hope it goes very smoothly.  

Elaine

[Lulu54]

You have made this choice knowing full well the possible risks.  May your treatment only give you great benefit.
Lots of love to you tonight and tomorrow,
Lulu

[Momzilla]

Thanks for letting us know, Sho!

Good luck, Queenie!  I hope it goes smoothly for you!

Hugs,

Princess*

[sllowe]

Thanks Shosh, for letting us know.

Wishing Rita the best of care w/her infusion tomorrow, and adding a prayer that her body accepts it well.

-shell