Reaction question
 

I had my first Tysabri infusion last Thursday and everything went fine - nothing unusual. Then on the weekend, I had extreme weakness in my legs, more than normal numbness in my feet. Instead of using one forearm crutch, I have gone to the wheelchair.

Question - has this happened to anyone else and what was the outcome? I am not discouraged...just a bit frustrated and curious. Thanks for any input!

~Teresa

Hi Teresa,

I felt pretty rundown the first few months, much more tired than usual. I hope this is just temporary for you. :hug:

Hi Teresa,

Sorry to hear you are you are not doing well in the last few days. However, I don't see this a ty reaction. My guess is it would have happened anyway. There are many things that could have caused this. You have been under a lot of stress just getting on ty, you could have an infection, you may just be having a few bad days or worse case you many be looking at the onset of a relapse.......... I'm not a Dr, but if I were you I would advise mine.

I think when many of us start ty we are nervous and scared. There is so much neg hype about this drug, how could we not be scared?? As such, we tend to look at all things as ty reactions. When often they are not. I can tell you in the last 6 mos on ty, I have had every ty reaction one could ever dream of. Everything that happened to me was a ty reaction. I have a Migraine from H*ll right now and 6-5-4 mos ago this would have been a ty reaction. I am not saying this is you or that you are like me - I just want you to stay calm and not look at everything as a ty reaction.

Guess what I NEVER HAD ANY TY REACTIONS except an expected drop in my immune system and much illness due to drop. I am COPD so this drug is hard on me, but the rest would be worse. I would be sick with needles, flu like sx, and my illness too.

BTW - You can look back at my posts. I drove everyone on this board nuts with every sx in the book. I have no idea how or why they stayed with me. But, they did. For that and so very much more - I thank them with all my heart.

Hang in there - we have some real ty experts on this board. They will show when they deam you really need them. That is one thing I know for a fact.

New trial for Tysabri to treat Multiple Myeloma
 

http://www.pharmatimes.com/WorldNews....aspx?id=14280

First dose for Phase I/II trial yesterday for Tysabri treatment for Multiple Myeloma.

Definition of Multiple Myeloma: http://www.multiplemyeloma.org/about_myeloma/

While this is NOT about MS, it does involve Tysabri and may mean another label change in the future, depending on the outcome of the trials.

Regardless of why it is being used, I hope Tysabri helps!

While I don't remember having the tiredness and weakness that others have reported, there HAVE been a lot of reports about people having the symptoms you report.

I work nights and go for my infusion after a full week of work, usually on 4 hours sleep or less the day of infusion, so I am NOT a good patient to compare to. :rolleyes: I'm ALWAYS tired!

Most people reported improvement around infusion # 3 or 4. I am not sure whether the whole stress and uncertainty of the decision to go on Tysabri is in play with some of this but as we all know, deciding to change or start a new therapy always has stress involved in it, whether we recognize it or not.

I hope this resolves for you. Please keep talking and let us know how you are doing!:)

clinic crowding
 

I had my third infusion today. What a nightmare. There are 4 infusion chairs in the MS clinic. All were taken when I got there, and most of the infusees (what to call them??) had just started. And I was on time!! I had to sit on this tiny old couch across from the chairs (no stretching out, no space to put my stuff, no back support) for the first 45 mins of my infusion, after waiting 30 mins. to begin with on the ratty couch. A relative of a patient was sitting next to me (it could only fit 2, and barely) and her stinky perfume was kicking up my allergies. I was so cranky!!! :mad: They claim they didn't overbook but that the clinic has too many infusion people now, only 1 nurse, some people come late, and they really need to expand space. I made a fuss at first, so 30 mins. into my infusion they kicked a guy out of the chair to wait out his last 45 mins on the couch. I felt bad but on the other hand I was stressed out about being there and wanted my cozy chair where I could lean back, close my eyes and pretend I wasn't surrounded by people with walkers and wheelchairs and hide under my blanket. I did start to tear up a little.

Anyhow, I'm feeling crummy after this infusion. Nausea, headache, muscle aches, and drowsy of course. Kind of like mild interferon flu. The first and second ones were a piece of cake. Is it normal to have some side effects on a 3rd infusion if you were fine for the first 2? I guess the Ty. is building up in my body?? maybe producing some side effects now? I did read it takes 6 months for the body to build up a steady state of the drug.

Help, I'm having a panic moment! :( You know, like I'll have flu symptoms from Ty from now on or I'll develop antibodies and have to go off and there are no other drugs for me that my body can take and the MS will get worse and I'll have to quit my job and I'll get more depressed etc. etc........ can you say catastrophizing? :( I'm worried as I have to teach two college classes tomorrow. What if I have to cancel the early one if I don't feel better tomorrow? Mondays are the only day I can go for infusions. I'm feeling guilty if I have to cancel. Ugh. Just one of those days.

So Sorry Nat....:hug::hug:

Natalie,

I'm so sorry you had to deal with that. :( :hug: I feel so lucky, I'm usually the only one getting my infusion. Just once there was another girl in the room with me.

I hope your side effects are just from the atmosphere of the infusion and that they'll pass soon. I had extreme tiredness the first several infusions, without any worsening at the 3rd one.

We're all different though, so maybe you'll just feel better in a day or two. :hug:

Tysabri - Melanoma warning:

On 05 September 2008, FDA issued a list of 20 drugs that may have serious risk or side effects. Tysabri is one of them.

Details can be found at the FDA website.

http://www.fda.gov/cder/aers/potenti...als_2008Q1.htm

We are heartbroken to see Tysabri on that list - it is the most effective drug that my wife has taken in holding relapses at bay.