NeuroTalk Support Groups - Tysabri Information & Check In

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - Tysabri Information & Check In (https://www.neurotalk.org/multiple-sclerosis/37891-tysabri-information-check.html)

Jodylee

02-12-2008 11:17 AM

Quote:

Originally Posted by Riverwild (Post 213635)

I'd never had a spinal MRI. I hadn't had a brain MRI since Oct. 2005. I had Brain, C-spine and T-spine in April 2007 for baseline before Tysabri. That got me a course of oral steroids ( I was on my way to S.C. for my godson's graduation. Nothing like 60 pills a day when all you want to do is have fun!) I wasn't missing my plane for IVSM! It must have been a nasty picture for the doc to send me off with that huge bottle of pills!

As for having antihistamines on hand...is your infusion center at a hospital or medical center? I would hazard a guess that they would have a crash cart on hand and qualified medical personnel immediately available. I would think any infusion center would, due to the possibility of a reaction to whatever they infuse there.

I have no experience with infusions in a Dr's office. My infusion center is part of a health center/hospital. They do infusions for everyone, cancer, Crohn's, MS, etc. I can see the crash cart from my seat in my room.

I have never premedicated with anything and I have never had a reaction.

I would ask the infusion center staff what their protocol is if someone has a reaction. More than likely they will ask you if you have any questions beforehand anyway. Write your questions down beforehand so you remember them!:D

For today? TRY to relax and just take it one day at a time! More than likely things will be fine tomorrow!:hug:

We'll be looking for you tomorrow for the full report!

Thanks RW! I'm having my infusion at the doctor's office. I will have a list of questions in hand, LOL, as usual.:)

Can't relax RW.:( Not about the Ty. My mom is waiting for biopsy results on a gigantic "mass" behind her heart (she's supposed to have them back tomorrow) and I live 1000 miles away from her.:( As soon as I get the Ty and mri stuff behind me I will be on a plane going to Pittsburgh.

I have to make sure I have the strength to handle this. I'm a tough "broad" :rolleyes:!

Whether it is cancerous or not, she has to have it removed, shrunk or something. It is in a very bad location. Lot's of pain.:(

Wish me luck! Please send some good thoughts my way.:o I really don't need to have any problems with the infusion right now.

ewizabeth

02-12-2008 01:04 PM

I had my infusion #10 yesterday and it went very well. :) I didn't feel as tired afterward as I have in the past, and I worked in the morning too. But I vegged all weekend so maybe that was part of it?

Next month will be early, on March 5th. I also need to get my annual MRI done. I'm going to the facility near the neuro's office so he'll have the results when I get to his office for my appt and infusion.

Something notable: My neuro knows of another case of cancer possibly related to Tysabri. A patient that had been in the Tysabri trials was off of it for several months. He'd been complaining of feeling forgetful so went in for an MRI. They found an advanced brain tumor that was somehow related to his previous malignant melanoma. I hope it isn't related to Tysabri, but if I had a history of melanoma I'd certainly take note.

I have an appt for a baseline skin checkup on Feb 20th. My Mom had skin cancer but I think it was carcinoma. She had fairer skin than me too, FWIW.

RedPenguins

02-12-2008 02:22 PM

Good luck, Joelle!!

Quote:

Originally Posted by joellelee2000 (Post 213585)

Has everyone had a baseline mri before starting Ty? I've never had a T-spine mri. My neuro wrote a scrip for one a week ago and I'm still waiting for authorization from my da** insurance company.

I won't be able to have the mri until after my first infusion. It's tomorrow, the 13th.

Also, do the infusion centers have benadryl, etc. on hand in case you have a reaction?

My neuro told me that it wasn't necessary for me to premedicate unless I have a reaction to the first infusion.

Thanks ahead of time! :):)

Joelle -

Hope your treatment goes well on the 13th - please let us know how it goes. I'm not a "praying" person - though with my dx maybe I will become one - or maybe it will confirm my stance - but thats a :Soapbox: for another time LOL -

Anyhow - I will be thinking of you out there, somewhere, and that things go smoothly for you - and that Tysabri is the key you need to unlocking a positive future - with less pain and more hope!!

Be well!!!
~Keri

RedPenguins

02-12-2008 02:26 PM

Quote:

Originally Posted by Riverwild (Post 213653)

Hi Keri,

Good Luck and let us know how it goes!!!:hug:

( Don't EVEN mention FDA and pull in the same sentence!! There would be a whole LOT of crushing going on and it would be the doors at the FDA by Tysabri users!!!)

Riverwild -

OMG - that is a LONG time to get there - but I know all the probs in the past with Tysabri... :sigh:

Please, ever since I read the posts about the recent developments, I've been wondering, if they pull it here, will they pull it in other countries, and could I get treatment out of the states? Hmmm. I'm going batty. This would be MY dumb luck! But let's not go there!!

I will let you know how it goes. I'm prepared to get on this drug and SOON!!

~Keri

SurvivingMSwithHOPE

02-12-2008 09:52 PM

Quote:

Originally Posted by Riverwild (Post 210922)

Well Good Grief! Now y'all are making me feel like I am an anomaly with no infusion reaction.:p

Did they slow down the infusion when it happened? Just curious cause I heard a lot of infusion centers do that too, rather than stopping it completely. You may have better luck if you do the infusion at a slower rate than normal.

Hopefully, some of the Tysabri users from the other board will hop in here if they are reading and let you know what their experience with this happening is and what was done in their case as to procedure.

Glad you made it through it! Keep us posted!:hug:

Hello all,

RW, I am not sure if they slowed it down, I was to nervous to notice!:rolleyes:

Before I say this, remember my Neuro said "All that has happened with me, well I am in the less than 5% that has a serious reaction" But of course, that would be me!

Today is first day I feel somewhat normal. My legs have been aching bad, headache came and went, I swear felt like a spinal headache. Just very achy, blah feeling and very fatigued all weekend and yesterday.

My Neuro called me today and said he definately wants me to stay on Tysabri, but my infusions will now take place at a hospital, to be close to doctors trained in anaphylactic emergencies. They are scared of how long it would take if they had to call 911:eek: Well, heck, now I am scared.

Has anyone heard of anyone doing their infusion at a hospital due to a severe reaction? My Neuro is hoping my body will adjust to the medication.

So, I guess they will overly pre-medicate me or stand there until I can't breathe??:p:rolleyes:

Trying to stay positive!
:grouphug::grouphug:

SurvivingMSwithHOPE

02-12-2008 09:57 PM

Quote:

Originally Posted by joellelee2000 (Post 213720)

Will be thinking about you tomorrow Joelle and also keeping your Mom in my prayers. You'll be fine tomorrow and with your Mom in no time!

Sending you good thoughts and vibes,
:grouphug: :hug: :grouphug:

barb02

02-13-2008 09:46 AM

Joelle, good luck with everything! Even though I had my appoitntment in the neuro's office they had all of the necessary med's available if they needed it -- benadryl, epi pen, crash cart. Of course my neuro's office is connected to the hopsital by a bridge.

I am also hoping that everything turns out well for your mother.

Riverwild

02-13-2008 10:42 AM

Good Luck to you joellelee and prayers are going out for Mom!:hug:

Riverwild

02-13-2008 10:56 AM

Quote:

Originally Posted by SurvivingMSwithHOPE (Post 214259)

Glad to hear you are feeling better today! Many people report the tiredness after infusion. I remember having a sore throat after my first two or three infusions.

In answer to your question about reactions, I have heard of a lot of folks having reactions with their first infusion.

In most cases the infusion was slowed, benadryl was administered, the reaction was stopped and infusion continued at a slower rate.

They were all advised to premedicate with benadryl pre infusion from that point on. Some do benadryl and Tylenol or ibuprofen. A lot of folks do Claritin so they don't have the drowsies.

In all of the cases I have heard of, the infusion was continued with a slower drip rate during following infusions.

In all cases the neuro was called and informed of the reaction, and was involved in the decision as to whether or not to continue.

I would follow my doctor's advice. Only you and your doctor can decide what to do if you continue to have problems.:hug:

mbsews

02-13-2008 04:32 PM

Quote:

Originally Posted by SurvivingMSwithHOPE (Post 214266)

All my infusions are done in the teaching hospital my neuro works out of becacuse that is where he infuses all his patients.

It seems smart to me to do your next and maybe all future infusions in a hospital because of your reaction...and probably to pre-medicate with benadryl. But I am praying that this is just a one time event for you and all your future infusions are boring but effective. :)

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