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Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Sat Dec 02, 2006 7:26 am Post subject:
Update:
A new obstacle I have not read about. Would appreciate comments.
Felt good going into Friday's workout. Workout itself went well.
Problem: As I have increased time for workout, my core body temp, something I had given no thought to in years, went up causing MS to reassert itself. The only thing I can come up with is backing off.
Joined: Jan 06, 2005 Posts: 52 Location: Massachusetts, USA
Posted: Mon Dec 04, 2006 9:31 am Post subject:
Pete -
How about wearing some kind of cooling device? I am not directly familiar with them, but I remember reading about ice wraps for the neck or the researchers from Stanford University who developed a hand grip cooler for athletes that they also have tested with people with MS.
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Wed Dec 06, 2006 11:30 am Post subject:
Update:
I tried 2 days, Mon, Wedn., to make sure my alternatives worked. What I did was wear a wet headband and cut my workout to 12 min. on the treadmill. Getting it through my skull that cutting my time down was OK, was challenging. My 3rd infusion is set for Dec. 18th. This seems to work. I have a feeling that at some point I'll try a coolling vest.
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Tue Dec 19, 2006 10:44 am Post subject:
Update:
My 3rd infusion went well on Monday, the 18th. Here is the tracking info.
Lot # P68013
Exp. 5/08
Feel better today than yesterday. Have not felt bad anytime. Just today, I had my hair cut and she said my posture was better along with speech. I told her nothing previous to her comments. Amazing stuff, Ty is.
Joined: Jan 06, 2005 Posts: 52 Location: Massachusetts, USA
Posted: Tue Dec 19, 2006 11:15 am Post subject: disappointing news
Hi All -
Sad to say but my fourth overall, and second since recommencing, Tysabri infusion was stopped midway because of an allergic reaction.
I was very focused going into it because of what I had read here about reactions and because I had gotten test results indicating positive Tysabri antibodies. My doctor and I decided to try and see if I would be spared an allergic reaction in the hope that the antibodies would be transient rather than persistent. (My understanding is that the allergic reactions and the antibodies are correlated, but not absolutely linked, and that the antibodies can, sometimes, go away.) Like many of you, I was more concerned about the negative effects of MS than the negative effects of Tysabri. I really wanted to try to make it work, especially because I can't take the CRABs.
But the allergic reaction eliminates the notion of seeing of if the antibodies were going to disappear so that the drug would actually be effective. The first thing I noticed was that palms were itching and we stopped the drip. My face got red and then eyes and feet got itchy. After a little Benadryl, it all went away (except for the disappointment).
I had just read an article over the weekend quoting a financial analyst describing Tysabri as "the world's most efficacious drug for MS" so I am truly sorry that I will not be able to take it. And am not sure how to describe how I feel about the fact that the stopping and reommencing could have increased the likelihood of this kind of response. (And our humor was getting a little twisted when we had to laugh at the irony that apparently if you have the antibodies, you can't get PML...)
Anyway, I wanted to post this information in the hopes that it will help someone else reading just as prior posts helped to raise my awareness of the situation and engage my doctor in some helpful conversations.
Joined: May 26, 2004 Posts: 1383 Location: London, ON, Canada
Posted: Tue Dec 19, 2006 7:31 pm Post subject: Re: disappointing news
Arcee,
Let me begin by saying how sorry I am that you can't continue to try Tysabri in the hope of helping your MS. Obviously since you can't use the CRABs, there wasn't much left for you to try and I know that you are terribly disappointed with the outcome.
Quote:
I had just read an article over the weekend quoting a financial analyst describing Tysabri as "the world's most efficacious drug for MS"
I wish that financial analysts would stick to reporting the world of finance and not try to indicate how good a drug may or may not be. While Tysabri may be better than the CRABs, that's not much of an accomplishment because their efficacy is pretty lousy.
I wish you well in whatever medication you try next.
Joined: Aug 14, 2006 Posts: 103 Location: So. Calif.
Posted: Thu Dec 21, 2006 5:10 pm Post subject: Hi Pete, Arcee.....
Thank you for the Lot# and Exp. date Pete, I sent the info to our website.
I had my 3rd infusion yesterday...no problems. I had a Tysabri vial with a new Lot# and a new Exp. date, which would seem to indicate (to me anyway), that there are even more patients on Tysabri therapy...plus, I found out that another Kaiser (in Woodland Hills) is infusing 2 other MS patients...woooohoooooo!
I usually don't see any kind of changes in my condition until a couple of days after the infusion, as my improvements have been very small and slow....but as a person I know said of their friend that has MS- he said after his infusions..."At least I'm not getting worse!", so I'm happy with this result for me too
I'm so sorry to hear of your allergic reaction Arcee, did you pre-treat the Tysabri infusion with a 25 min. Benadryl drip?
Either way, you are all in my prayers...,
Happy Holidays to each of you!
Lauren _________________ Feel free to visit my Blog and leave me a comment, I'd love to hear from you!
Joined: Jan 06, 2005 Posts: 52 Location: Massachusetts, USA
Posted: Fri Dec 22, 2006 9:09 am Post subject:
Lauren, my doctor and I discussed using Benadryl prophylactically but he wasn't willing to do it, didn't want to mask the reaction. My sense is that they are not willing to do it at this clinic. But it's an interesting point, and I'll inquire. Can you tell me anything more about the rationale behind it?
Joined: Aug 14, 2006 Posts: 103 Location: So. Calif.
Posted: Fri Dec 22, 2006 3:02 pm Post subject: Hi Arcee
Arcee, it is within the 12 weeks (first 3 infusions), we are at greatest risk for developing some sort of allergic reaction to Tysabri (especially if we had Tysabri in 2005, and especially if the drip (infusion) is not slowed down. This is not true for everyone receiving Tysabri, and allergic (hypersensitivity) reactions can happen at anytime (from what I understand).
What I do know is that the neurologists/infusion centers dosing in the original trials, as well as dosing the general population now (if you email me at LGLBGL2003@AOL.COM), I can send you more info on them as I cant remember the name right now ...anyway, they use Claritan and Tylenol as a pre-medication to Tysabri which is also infused at a very slow rate.
Apparently it is the speed of the dosing that plays a significant role in allergic reactions as our bodies need to get use to the med again. I am not a doctor, Arcee, I just know a lot of people on Tysabri therapy, and this is information they shared with me.
There is also another med (like Benadryl or Claritan) that other neuros are using (which again I can't think of right now-it's in my AOL filing cabinet), in the event the Claritan causes a headache
The rationale behind pre-medicating is "an ounce of Prevention is worth a Pound of cure". Write me Arcee and I'll send you more info and post it here as well, once I sign on to AOL in about 20 mins., ok?
Don't ever give up the fight for your choice of therapy, Arcee. It's our body, our life, and our MS...We need to be our own patient advocates!
Merry Christmas everyone...
Lauren _________________ Feel free to visit my Blog and leave me a comment, I'd love to hear from you!
i had my second ty infusion dec. 12. there have been little signs. for example, i have had this intense ringing in my right ear and since the infusion, i've heard little pop sounds and once in while, the ringing goes away for a few seconds. i also have experienced seconds of near normal walking, which is just wonderful. i am tired a lot, but am trying really hard to stay upbeat. my third infusion is set for jan. 10.
noreen
Joined: Sep 12, 2006 Posts: 901 Location: Dayton, Ohio USA
Posted: Wed Jan 24, 2007 3:10 pm Post subject:
Pete,
I just read this entire thread (at work no less ) and it is very good to hear all of this. I am in the Tovaxin trial and have been told by my neuro. that if the Tovaxin is a bust, then we'll go with Tysabri next.
It sounds like it definitely is somewhat like the CRABs in that it works well for some and not so well for others. Keep posting! We sound very similar in age and we're both male so I am paying close attention. I have a lot less disability than you had when you started this, but if it works, I'd really like to not get anymore!
Joined: Aug 10, 2006 Posts: 39 Location: Hyde Park, NY
Posted: Wed Jan 31, 2007 8:20 am Post subject: Postings
I have not posted in a while, because there have been not a lot of major changes. After the 1st infusion progress has been slow but steady. Only MS people would care or indeed notice. Bathrooming has been a great change for me. Sleeping through the night is something that seems easy, but in reality has to be gotten used to. To many minor changes to type about. For me, Ty is good. Driving with my left hand is cool. Looking forward to # 5.
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) and it is very good to hear all of this. I am in the Tovaxin trial and have been told by my neuro. that if the Tovaxin is a bust, then we'll go with Tysabri next.