Tysabri and shortness of breath

[DexterMorgan]

So yesterday I had my infusion again and just everything was a disaster. Nurses were complaining I had to wait for hours to get my blood results back etc.

And than to top it all off they eventually gave me the Tysabri and while I was getting it, I just couldn't breath! It felt like everything inside my throat and my lungs were swelling up and I just couldn't get a hold of a good breath in! By the time the infusion was almost done it got better and I could breath more properly but man this was scary. There was no nurse to be seen, so I didn't tell it to anyone there. All and all I was kind of embarrassed and too much in shock to even explain it to a nurse or doctor.

I'm still feeling that I can't really breath properly but it's getting better.

Has anyone had an experience like this?

[KatieAgain]

Yes...but not with Tysabri. What you are describing is very serious. I urge you to please go to Urgent Care or the ER and be checked out.

You could be having anxiety over the BS you went through, or it can also be an allergic reaction to TY. Does not matter that it is getting better. Please let a doc know as soon as possible.

And don't ever be embarrassed about letting anyone know at the Infusion Site that you are having issues. They are equipped to deal with such situations.

[momof4boys]

Dexter,
This happened to me once but I was having an allergic reaction to the Tysabri. They took immediate steps to stop the reaction. Keep an eye on this during your next infusion.
Amy

[DexterMorgan]

I'd be really bummed out if I were to be allergic to Tysabri suddenly. I'll call my MS nurse first thing in the morning tomorrow and see what she has to say.

@Katieagain: at first I thought I was having some kind of panic attack but I've never had them and I was just sitting calmly down so it's bizarre I guess to have an attack then? When the weird swelling feeling went away I had this weird tingling sensation all over my neck and chest. After everything they checked my BP and it was 8 over 5 so that's quite low!

@momof4boys: could you maybe describe how it felt for you?

At this point I'm just having trouble with taking a deep breath in, it just doesn't feel satisfying it's like I can't fill up my lungs completely. This is so strange urgh.

Thanks a lot for the reactions guys, hope the hospital will take this seriously if I give them a call...

[ru4cats]

This did happen to me once at, I believe, my 4th or 5th infusion. I felt my chest tighten, and I was kind of breathing in gulps. Like you, I didn't say anything to the nurse, and I just gutted it out. It didn't last long, and when it went away, it never came back. I know it was some sort of reaction to Tysabri, but since that one incident, I've never had another incident. Like I've said before, day 1 is just like day 28. I sincerely hope you are like me!

[momof4boys]

Dexter,
The reaction started with huge hives on my legs and arms. It then traveled into my airway where I was not passing air. Very troubling. That was the 2&3 infusion. I premeditated with steroids and Benadryl for about a year after. Now all I take is 25 mg of Benadryl before each infusion. I guess my point is this was a severe reaction so don't streets just yet about being allergic but defiantly mention it to your doc or nurse.

[DexterMorgan]

Thanks for the reactions! Well I got a response back from my neurologist and because I'm still having trouble breathing she is quite certain that it has nothing to do with the Tysabri. Which to me really sounds like ***, you are not going to tell me that I had trouble breathing all on my own? That it was all just a coincidence?

I don't know I'm quite mad now and definitely not looking forward to next month. Let's just hope that it was a 1 time thing.

[AFCC]

So yesterday I had my infusion again and just everything was a disaster. Nurses were complaining I had to wait for hours to get my blood results back etc.

And than to top it all off they eventually gave me the Tysabri and while I was getting it, I just couldn't breath! It felt like everything inside my throat and my lungs were swelling up and I just couldn't get a hold of a good breath in! By the time the infusion was almost done it got better and I could breath more properly but man this was scary. There was no nurse to be seen, so I didn't tell it to anyone there. All and all I was kind of embarrassed and too much in shock to even explain it to a nurse or doctor.

I'm still feeling that I can't really breath properly but it's getting better.

Has anyone had an experience like this?

Wow! I'm no expert on TYSABRI so I cant say what is linked and what isn't linked to it. Its hard to justify that something isn't linked to a drug when your fine up until you start a drug and start having issues. I've seen stranger things happen though!!

My question is - These infusions take about an hour, are you saying there was no nurse there during the entire time that bag dripped in your arm?

I will be the first to say allot of things are embarrassing with MS and we tend to shut down (I did, and still do) but the cat is out of the bag while we sit in these oversized leather recliners and eat pretzels while we get infused when it comes to your health and especially this - you should make this a priority to tell someone and someone of importance.

Everything I have seen so far - My infusion center, TOUCH program, etc.. they take every possible issue with TYSABRI serious. I hope you made the call and informed someone

[DexterMorgan]

@AFCC: Yup that's what I'm saying... At that day there were 2 nurses working and it was quite busy. They usually don't stay in the room where all the patients are but in a different room where they can check up on blood results etc. So it happens quite often that an hour goes by and there is no one to see. It actually happens a lot that my machine will beep because the Tysabri bag has run out and I have to wait for at least 15 minutes until a nurse comes in to shut down the machine and switch me to the saline bag. And many times where I walked up to the nurse room myself because I got so annoyed.

I didn't want to make a fool out of myself and start screaming or so lol, so I just gutted it out and luckily it did pass. It's just not 100% completely better.

And I got a response from my doctor but she feels it's not from the Tysabri and that I should see a GP about it. I don't feel I'm being taken seriously at all...

[sweetjanesvest]

I have been on tysabri since may of last year and about 5 infusions in I began feeling disassociated from my body and my heart rate was increasing rapidly. I was short of breath and my sinuses and ears were stuffy. I thought I was having a panic attack (I have had them before).

Then some itching in my ears and neck. Told the nurses right away and they gave me an injection of Benadryl and OH MY HECK THE RELIEF! My sinuses immediately opened up, the itching stopped and the drowsiness kicked in and I attempted to sleep through the rest of the infusion. I now take 50mg of benydryl every time I infuse since the next week when i took 25mg near the end of the infusion I ended up reacting again.

Dr said I can take it on my own before I come in so it's working when the infusion starts, or you should be able to request it from a nurse. Sounds like a reaction to me, they can start and stop at any time, no harm in taking a Benadryl to avoid scary moments like that!

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[DexterMorgan]

Thanks, good knowing that! It was a 1 time thing though, this week I had no trouble breathing whatsoever. The only new thing is stiffness in my neck muscles and muscle pain for about a week since my infusion. Hopefully it's just a cold or so!

[lindaincolorado]

I am a fortunate Tysabri user that has not had a side effect I have had 92 infusions at different sites and in 2 different states. What you are describing as care to me and I'm pretty sure to Touch is unacceptable. I would look for another infusion site, Touch can help you find one; the # for Active Source is 800-456-2255.

I, also, am wondering about your Dr's office It sure sounds to me like you needed Benadryl. Maybe you still want to take Benadryl now and go in to see your primary dr ? Just a thought ..

Sorry you went thru this..
Take care
Linda

[22cyclist]

DexterMorgan: You may want to ask your neurologist to write an order to have the medication run in over two hours instead of one. I have allergic reactions to it as well. Take my benadryl, but also they run the infusion over 2 hours, then the saline over 1. It feels so much better for me.

The other thing you may want to have them check for long term shortness of breath is your RBC level. If you are anemic, that can make you short of breath a lot, and can give you chest pain. This has happened to me from taking Ty, my red blood cell level dropped pretty low. They did nothing about it, but at least I knew where it was coming from.

Good luck, and let us know how it goes, OK?

Lisa

[DexterMorgan]

I am a fortunate Tysabri user that has not had a side effect I have had 92 infusions at different sites and in 2 different states. What you are describing as care to me and I'm pretty sure to Touch is unacceptable. I would look for another infusion site, Touch can help you find one; the # for Active Source is 800-456-2255.

I, also, am wondering about your Dr's office It sure sounds to me like you needed Benadryl. Maybe you still want to take Benadryl now and go in to see your primary dr ? Just a thought ..

Sorry you went thru this..
Take care
Linda

First of all, thank you all for your kind words and support it really means a lot!

I'm in Europe so maybe the care is different here... The hospital I went before this one didn't even do blood check ups, you just went in, stayed there an hour for the infusion and you could leave. This hospital however does blood check ups and a neuro-assistant always checks me for symptoms.

I'm definitely going to discuss this with my GP and see what he says about this situation. If Benadryl could help with these weird symptoms, sign me up! My lymph nodes are completely swollen and painful since the Tysabri and I have no other cold or fly symptoms it's quite weird. But it wouldn't make sense that this would be an allergic reaction? Sooo confused haha!

I'll just have to keep an eye on this, it's been a week now and no improvement...

[DexterMorgan]

DexterMorgan: You may want to ask your neurologist to write an order to have the medication run in over two hours instead of one. I have allergic reactions to it as well. Take my benadryl, but also they run the infusion over 2 hours, then the saline over 1. It feels so much better for me.

The other thing you may want to have them check for long term shortness of breath is your RBC level. If you are anemic, that can make you short of breath a lot, and can give you chest pain. This has happened to me from taking Ty, my red blood cell level dropped pretty low. They did nothing about it, but at least I knew where it was coming from.

Good luck, and let us know how it goes, OK?

Lisa

Whoa that's a really good idea! I'm getting the Tysabri since I was 19 (22 now) and I've always had this feeling that it was too heavy for me. I'm definitely going to suggest that!

And good point, started taking iron as well as of today because I pretty much always have an iron deficit. Didn't even think about that!

I'll definitely keep you updated, I just hope the symptoms I have now will go away fast!

Thank you!