2nd infusion redux

leeeeeway · Posted: Thu Sep 28, 2006 4:42 pm Post subject:

It's ok, Amelia. I'm better now than I was when I wrote yesterday. I'm feeling "stoic" today. I saw my neuro today and am starting back on Betaseron. Like everyone one elso who has this MS deal the "what if's" scare the crap out of me. Tysabri turns out to not be the next deal for me...I thought it was. So I'm catching up with reality. My neuro told me that she has had 4 patients with anaphylactic shock and all of us took the med originally. The key times seem to be the 4-6 infusions. This was my 4th. She spoke with Biogen about this yesterday and they agreed since if this turns out to be a trend then "pulsing" Tysabri would be a problem. Don't misunderstand. If I could take it I would.

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.

amelia · Posted: Thu Sep 28, 2006 5:04 pm Post subject:

I have read alot on this board about the natural approach. Gary and I have talked and decided that "for now" if Tysabri doesn't work, we will look at other alternatives to treating his MS. Our scare is that he teeters on severe disability. Although to some, he is already there. I have known for a long time about where he could wind up. It is just roads we don't go down unless we have to. My theory with the MS is some type of nutritional defiencies, now or later. Gary's aunt if a NP and takes Juice plus. She has always dabble in herbs and vitamins. But she swears by this and has read much on research with it and MS. Gary has decided to take it. Supplements or juices or something. It really can't hurt to see if it helps. Lord knows we don't eat like we should. Just be careful Lee with the antibodies in Betaseron. They don't do anything except keep the medicine from working. Then you wind up taking something so potent for no reason. Gary developed that and it kicked him away from all interferons. We start our journey again Monday with his spinal MRI. Then wait a week and see Neuro.

leeeeeway · Posted: Sat Sep 30, 2006 11:27 am Post subject:

Yes, if I develop the antibodies for interferons that would be a disaster. My neuro is in the test for double dosing Betaseron which is finishing up at the end to the year. That will be my next step probably... I am not really up on the natural stuff. I hope it works for Gary...I think I would try it in his shoes but we'll hope for Tysabri for him first, OK? I can't remember if he took it before like I did...

amelia · Posted: Sat Sep 30, 2006 12:18 pm Post subject:

He had been on Copaxon. Took it faithfully for several years. Then we read here where every other day was just as good. Decided to try it. It worked for him. Then the hope of Tysabri came along and he started dewindling more and more' every 2 days, every 3 days; every once in a while. Then with the heightened anticipation of Tysabri in Jan 06, he stopped altogether. We are anxious to see Neuro to see what the "brain" side of his MS did in this time. Gary has been trying to get on Tysabri since it came out. He was on the list, but never received a treatment.

Ronnie

Dear Amelia, Lee, Harry, etc:
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' Shocked

and 'confused'

emoticons, there should be a 'severly disappointed'. Somebody should jump on this.

Take care!
Ronnie

amelia · Posted: Wed Nov 15, 2006 11:03 am Post subject:

So glad to hear from you Ronnie.
Crying or Very sad

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.

Ronnie · Posted: Thu Nov 16, 2006 9:01 am Post subject: In this way...

Dear Amelia:
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.
Laughing

This means I understand that life is ridiculous.
Love,
Ronnie

amelia · Posted: Thu Nov 16, 2006 11:48 am Post subject:

@#$%^&&^%#$%^&*() FDA!!!!!!!! for "helping" the consumer for safety looks like it has done the EXACT OPPOSITE.
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. Rolling Eyes

But so does MS, they just don't talk about it.

Ronnie · Posted: Thu Nov 16, 2006 8:32 pm Post subject:

Dear Amelia and Gary:
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.
Love, Ronnie