Hi All,

I went for infusion #2 today and after a few UNsuccesful tries they FINALLY got a vein to use on me, they sugessted I get a port........Duh, that is what I wanted from the start......BUT after the whole dose of Ty went in I developed a slight red blotchyness on my arms and stomach.......they gave me IV benedryl and took a vile of blood from me to check for antibodies.

i would think that I should be OK for Tysabri in the future because it was such a slight reaction BUT the blood work will tell the story on if I stay on it or not..

This is IT for me as far a the CRAB drugs go, I have tried them all, ty is my one last hope........

Has anyone else had this problem?

Thanks

Joe

Hi Joe!
Sorry to hear about your rashy stuff! Your neuro may have you pretreat with Benadryl and tylenol before infusion now.

I have had pinpoint itching during infusion for awhile now. It doesn't get worse, there's no physical evidence, no further signs or symptoms involved. I am trying to get to the bottom of it during infusion. I noticed that the mixture in the IV bag seemed to be separating towards the end of infusion , so last month we rotated the bag a few times and no itchies.

Have you posted this on the Tysabri thread? Maybe you will get a response from someone who is now or has been on Ty and has had these symptoms.

I hope it works out for you! Please let us know how it comes out!

http://www.tysabri.com/tysbProject/tysb.portal

I hope this explains the antibody stuff for you!

I am sorry!

(I am so glad I was sitting down when I read your post by the way!)

i'm sorry about the reaction joe.
i hope you can con't with the med.
but sometimes reactions will only get worse. i'm sure they'll let you know.

good luck.

You aren't using Benadryl now, Joe? Many people do . . . although I don't necessarily agree. I always avoid allergens, personally.

I've heard of some that Benadryl does the trick, and others where the next reaction (after one like this) is much worse. PLEASE make sure someone stays with you next time, or there is a good emergency notification.

I hope you are one that can manage the allergy though, as I know you had high hopes for this treatment option.

Cherie

If I remember correctly from the information that I have, pre-treating with benadryl and/or claritin (or something similar) is at the discretion of the treating physician. It's not in the protocol.

I hope you have a better time with your next infusion Joe. I did give you a link to some information in my post above. I hope it helps.

Av8Girl, I did get the link it took me to the Ty page, I didn't know where to go from there?

Cherie,

Yes they gave me Benedryl after I had the reaction, then they took a blood sample, I don't know if the neuro is going to keep me on it or not...it was a very slight reaction but as you say it could be get worse with the next one.

I am still numb from chest to waist and now BOTH my hands are numb.......I had an MRI of just the neck on Friday, now they think I may have a disc slipping back there...........i have HAD it with doctors, this is ridiculas.........unfortunately there are no other neuros for MS up here in this forsaken town........everybody sais do not give up well I feel as if the docs have no clue, after 3 months of treatment for TM related to MS, NOW they look into a slipping disc?

I am ALMOST right back to square one with numbness the only thing I don't have NOW that I had then is the pain and NOW both hands are numb, they weren't before..

I have HAD it.........

Thanks all for the replies, if anyone else can chime in I would apprecate it also, it seems like everybody HERE knows more than my doctors!!!

Thanks

Joe

I think you are correct, Cheryl. According to this FDA site, there are two major warnings with Tysabri . . .

"Do not receive TYSABRI, if you:

. have PML
. are allergic to TYSABRI

. Allergic reactions including serious allergic reactions. Symptoms can
include:

. hives
. itching .
. trouble breathing
. chest pain
. dizziness
. chills
. rash
. nausea
. flushing of skin
. low blood pressure"

http://www.fda.gov/cder/foi/label/20...104s015lbl.pdf

However, I am aware (even from our Tysabri thread here), that a lot of people are advised to take antihisitimines before they are infused, so undoubtedly some allergic reactions will go unnoticed (be "masked" by the the antihistimines), especially if they are not very serious or persistent.

Cherie

So, your infusion center doesn't give out Benadryl to all patients before the treatment then?

Since you've already had a reaction, I think I'd be asking for it BEFORE the next time. Maybe that will be enough to ward off future reactions . . .

My concern is always escalating reactions to allergens, which seems to happen for me. I can be fine using something, even for a long time, but once I have that first reaction, the second one is usually worse. Of course I hope that is not the case for you, but like I said, please make sure they are watching over you well next time.

When you say back to square one, and that you are numb from the chest to the waist . . . are you saying you are back to where you were three months ago? But no pain? How long have you been numb again? When did the hand numbness come on?

It is possible this is a disc problem TOO (I keep trying to convince my doc & neuro that that is all my problem is ), and I guess the reason I am hoping that is true for you is because you don't have the pain this time. That is a tell-tale TM symptom . . . but I know people who have had disc problems that don't get that same "hug" or swollen feeling pain like we do. They usually have like an ache that follows along the nerve, from the disc down the arm, etc.

I would sure be glad for you if this was a disc problem, because at least you can fix this (usually) with serious PT therapy. My ex had a disc problem and it took about 6 months of intense therapy (EVERY DAY for several hours), but he has very little problems from it now and a very strenuous job.

Didn't they see lesions in your C-spine?

You described a TM attack as well as anyone I've ever run across, so I really think that's what you had. It is possible that this is something different . . . but I'd like to hear more about what's been going on lately . . .

Cherie