I want to say to everyone...stay very close to your dr and make sure you are not alone during those first few infusions if you had the drug previously. My nurse was only out of the room for seconds and that's when Murphy got me. The anaphylactic shock is scary but not as scary as not knowing what I'm gonna do next. Oh I know: Wait...that's what I'm gonna do...wait.
Now I can read more carefully, and was redirected to this topic, and I FOUND IT! Amazing.
This is where I need to be.
Yes, my reaction started within just minutes of starting the infusion. It was the fourth infusion, the second after Tysabri was reintroduced. I guess I am going to be a textbook case. I suggested that we sell tickets next time, But I was just kidding.
One symptom which I had and which nobody else has mentioned: my teeth started chattering, wildly, like a cartoon character. It was comical, or would have been if the rest of me didn't hurt quite so much.
It actually did occur to me that the long layover before reintroducing the drug may have set me up for the reaction. Kind of like beestings, or eating peanuts. My mother has asthma, so I am already worried about anaphylaxis.
I am going to call my neurologist's office and ask more specifically what the heck we are going to do now, because just rushing ahead and premedicating with Benadryl (which is what I am told to do), and starting another infusion on schedule, sounds foolhardy. If they could do a blood test, as Lee described, I would at least feel like we were doing SOMETHING! I think we all feel like we are flailing around in the dark with this disease anyway, so I would welcome any actual knowledge, even if it was essentially useless.
Somewhere inbetween the 'shocked' and 'confused' emoticons, there should be a 'severly disappointed'. Somebody should jump on this.
Sad in this way though.
Don't know if you have read that Gary was approved and disapproved in a couple of hours. They now know that he has Devic's, NOT MS. Yeah, it took 20 years to get a definite DX for him. Now we are filtering through many other medicines to see what is best for him. take care and we have missed you.
I am sorry to hear that Gary was misdiagnosed, but I am glad to hear that they have found the true diagnosis!
Yes, wasted time in one sense, but at least you tried every avenue which was possible at the time.
Diagnosis is such a murky business.
Speaking of which, evidently there was ANOTHER incident at my neurologists office since Monday, they are setting me up to have the blood test (I signed a release form and I have a feeling this will be my Christmas present), and Dr. Bass was attending some kind of presentation set up by Biogen/Elan. Sounds like the delay in dosing was our undoing--I love irony.
I have to go now! Today I have my faculty evaluation/observation by my faculty advisor, and I have to slap together a class presentation.
This means I understand that life is ridiculous.
Rituxan, which is a monoclonal antibody, is given for Devic's. New venture, so Medicare doesn't pay right now. Gary and I have looked at the options of medicines and found others to use. With all the Tysabri, take it and later you can't, being a monoclonal antibody itself, Gary has decided to stay away from the Rituxan at the moment. We are scared he would develope antibodies to it and then the "best medicine out there" he would not be able to take. Devic's can go really crazy, out of control and put you on a respirator quickly. And it can kill, unfortunately. But so does MS, they just don't talk about it.
The FDA does have a knack for screwing things up. As does Medicare.
I am not sure what will happen now, and I feel very empty. I am not angry, but I am also not optimistic. Tysabri seems to have become ineffective for a minority of patients, and I seem to be one of them. But, what does this mean for all of the other patients, if it is on the market for a much longer time? What if the tendency to become sensitized will be a problem for all patients over time? PML was much worse, of course. Is there any relationship between these two problems?
Right now, we are still here. I am waiting, expectant, hoping for something positive, but I am not holding my breath. I think Gary is wise in his decision to wait on the Rituxan, having watched the whole Tysabri debacle unfold. I think we are all "once burned, twice shy".
I will keep you in my prayers.
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