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Tysabri questions....

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Posted 6/27/2008 12:10 PM (GMT 0)
the Humira is not really doing its job...almost a year later...never really out of my flare (is it still a flare after 2 or 3 years?)

So next week I meet with the Doc and we will discuss options...remicade is not an option so I imagine we may move to TYSABRI....I used Tysabri several years ago when I was involved in the testing of it.  I had great results.

So two questions;

1.)  Are those of you on it having good results?

2.)  Has anyone heard anything about expected outcomes for people who start taking it for the second time ...years after stopping?

Posted 6/27/2008 3:42 PM (GMT 0)
I am finally doing well after a year and a half flare (during which I failed Remicade, Humira, MTX). I have had 4 Tysabri infusions with my 5th in 2 weeks, but I also started Xifaxan. It was 3 days after I started the Xifaxan that I started getting better. Coincidentally that was also a week after my third infusion, which is when I was told the Tysabri would kick in. So, it's hard for me to know exactly what is helping, but I am enjoying it. I am not in full remission as I still have some symptoms. But I am only in the bathroom 3 times/day instead of 15, no blood, pain 97% gone, no fevers, no night sweats... Off steroids finally.

I have not heard about stopping and starting causing issues or not. I've not heard either way. It is something I am wondering about though. Have you called Biogen about that?

I hope you are able to start it back up as it sounds like it worked wonders for you. Best of luck!
Posted 6/27/2008 3:53 PM (GMT 0)

sr5599 said...
I am finally doing well after a year and a half flare (during which I failed Remicade, Humira, MTX). I have had 4 Tysabri infusions with my 5th in 2 weeks, but I also started Xifaxan. It was 3 days after I started the Xifaxan that I started getting better. Coincidentally that was also a week after my third infusion, which is when I was told the Tysabri would kick in. So, it's hard for me to know exactly what is helping, but I am enjoying it. I am not in full remission as I still have some symptoms. But I am only in the bathroom 3 times/day instead of 15, no blood, pain 97% gone, no fevers, no night sweats... Off steroids finally.

I have not heard about stopping and starting causing issues or not. I've not heard either way. It is something I am wondering about though. Have you called Biogen about that?

I hope you are able to start it back up as it sounds like it worked wonders for you. Best of luck!

I have not asked...keep meaning too ...but maybe now I will be motivated enough.

When I was on it...the very first infusion did it for me....tons of energy, and 97 to 99 % of my syptoms were gone....always a day or two before the next infusion I would move towards the edge of a flare....each infusion only gave me about 28 days.  i couldn't always get back to the office right on the 28th day....so by the 30th Iwas more than ready.

When I was taken off it (because of the folks who died) I was back to a full flare in under 45 days

Posted 6/27/2008 8:03 PM (GMT 0)
see that's what keeps me wondering if it's really the Tysabri helping me or if it's more the Xifaxan ... or a true cocktail. The Tysabri did not seem to be doing much until I started the antibiotic. A week after my 3rd infusion. At that time I was starting to have more fevers again (had just tapered steroids), more night sweats, more issues in general. For you the Tysabri kicked in right away.

Jid -- how long was it for you before it kicked in? A couple of infusions, right?

I'd be glad to know what Biogen says about the antibodies and stopping/starting again... Thanks for bringing it up!
Posted 6/28/2008 12:56 AM (GMT 0)
Also, I forgot to ask earlier... both of you and anyone else who's tried Tysabri -- anyone else have crazy, vivid dreams on it? For the past 3 weeks I've been having these crazy, wild dreams, almost like lucid dreaming even. The only other med I'm on is Xifaxan and it seems odd that an antibiotic would cause it.

It could be coincidental, but just wanted to ask as long as there is a new Tysabri thread going.
Posted 6/28/2008 9:36 PM (GMT 0)
I have some of the most realistic dreams Ive ever had. I wake up and it takes me a minute to realize it was just a dream. Kinda crazy actually.
Posted 6/29/2008 6:10 PM (GMT 0)
Well, at least I'm not the only one. They are very vivid! Last night I went to Russia and got hassled by border patrol! They were trying to get me to paint my car (I guess I drove there???) and I was looking for a rental instead. I can remember the streets I was walking along with my daughter. So strange. Oh, and I got a tattoo that I was not happy about "in the morning" (in the morning of my dream, that is)

How's it working for you FinalMacGyver?
Posted 7/2/2008 3:35 PM (GMT 0)

I have this one very vivid dream that keeeps repeating...I am on my computer typing entries onto a bulletin board called Healing Well and..uh..and...oh wait it's not a dream

So no...I don't recall any increase in vivid dreams.  I have always had wild dreams...it maybe why I enjoy sleeping so much.

btw...I caled Biogen and the person there said I would have to work with the Doctor and the tysabri case manager to decide how long I would need to be off the Humira before starting the Tysabri.. The big downer was that they believe that it is very possible that I would or could have built up am immunity to the effects of the Tysabri since I was on it before and on it for such a long time.  there is no study or conclusive information though on that question.

Posted 7/2/2008 6:05 PM (GMT 0)
I am so sorry to hear that! I've been figuring that would be the course, building immunity, that is. It seems like all of these drugs carry that risk. I would love to quit taking it for a while to see if it's the Xifaxan helping or the Tysabri, but I am just not willing to take the risk of losing the benefit!!!!! Whatever's working, I want it to keep working. I've spent nearly two years in a horrible flare (hemorrhage type bleeding) and I do not want to risk it again! I've only been "well" (not full remission) for a month!

Thanks for following up and letting us know! I'd love to know how it goes for you... Even how long your doc suggests being off the Humira before trying Tysabri again. That sounds scary... Losing whatever benefit you get from Humira for a few months then hoping you don't have immunity to Tysabri.

I'll be thinking good thoughts for you!
Posted 7/2/2008 7:47 PM (GMT 0)

funny you should ask and thanks for the thoughts....

I was at my doctors this afternoon and we discussed switching to the Tysabri....he suggests 8 weeks of no Humira before moving to the Tysabri.  He agrees that I may have a new built up resistance to it and feels certain that it will not be as effective as it was at first.  He also warns that I probably won't be able to go back to Humira even for the limited relief since it performed so poorly to begin with.

He feels that all of the new drugs have a high risk of failing eventually due to the patient building up a resistance.

The way I look at it....I am not as bad off as some....I am able to keep working towards relief....and as JFK said Life is not fair!  So...who knows maybe pig worms for the next treatment.

Keep the faith...keep fighting

Posted 7/2/2008 8:21 PM (GMT 0)
Sorry for the disappearing for a while. I had my 5th infusion reaction today. I had to wash out 12 weeks of no humira (I was on the humira study) before i went on tysabri. since i've been on it, im 100% off of the steroids and feeling pretty good overall. tysari does exaggerate some of my joint pains... but that is typical. at infusion #4, i had a slight infusion reaction... a little dizziness... but i hadn't eaten anything at all and i was exhausted. today i had some gatorade, a bagel, a coffee, and some tylenol + claritin before the infusion. Dr wanted to give me benadryl but I declined. i'm glad i did. no reaction. but we did do a stepped-rate on the infusion... start out slow and then increase to regular speed after 30 min.

So overall i like the idea of tysabri. I know a few people who have tried it and it didn't work well. for me, it has been the only thing that _is_ working.

I'll try to be on-line more often to answer some questions... but today, on infusion 5, i'm doing pretty well!

J
Posted 7/2/2008 8:23 PM (GMT 0)
One more detail: A very sweet gal that I usually schedule my infusions with was on the tysabri study. when she went back on, it didn't go well and she is no longer my infusion bud. She didn't do well when back on the tysabri at all. she tried and tried and really wanted it to work out... but no dice. She's going to try something else now I think... just not sure what.

J
Posted 7/7/2008 7:49 PM (GMT 0)
Tysabri has been presented to me as an option and I've been a little nervous because of the 3 people dying issue, although I've had two respected GIs tell me that no one who was using it by itself, with no other immuno drug, had a problem. I guess I might just need to bite the bullet and get over that.

How have you all been handling that?

My symptoms may be a little strange, so I'm wondering if anyone on Tysabri has had relief from some of it. I don't have D, never did. I do have cramping when I exert myself, like walking up a hill or stairs, sometimes even getting up from a chair and walking across the room.

I've also been getting what I call 4 hour flu where I get severe shivers for an hour, then my fever rises, sometimes up to 103, 104, and then it breaks. The whole thing lasts about 4 hours. The last two knocked me out for the next day, and the most recent won me an ambulance ride to the hospital because it came with some abdominal distress and back pain that was close to labor. Has anyone else had this, and has Tysabri helped?

I guess I'm looking for real patients as opposed to the docs to help me feel better about this!

Current meds include Pentasa, 4g/day, Entocort 9mg, Altace, 10mg, Synthroid 137 mics.
Posted 7/7/2008 9:59 PM (GMT 0)
I admit that I get nervous.  I also have two trusted GIs.  My prescribing doc assures me, as yours is, that as a monotherapy they have seen no issues.  The other says he doesn't really like to see people on it.  But, there is nothing else I can use!  So, it's this or an ileostomy.  Surgery comes with many risks, so I guess it's just a matter of accepting that my life is not simple like it used to be B.C. (before Crohn's).  And, now that I'm getting better, it's easier to take on the risk.

I do have a prescription for Ativan, and I sometimes take a half pill (.5mg) before bedtime.  This helps me not wake and worry.

I went through some serious worrying about it a week or so after my last infusion, but once I realized I was freaking myself out I got over it.

It does seem to take a while to kick in, at least for myself and the other two on here.  Hsspenser was in the trial and I believe I remember it worked immediately...

 

Posted 7/7/2008 10:09 PM (GMT 0)
My PCP's reaction was not to go near it because of the 3 people, but I didn't have time to explain further. You're right, surgery has side effects and isn't a cure. As one doc said, you can't undo surgery, but you can always have it later. I wish I had qualified for the prochymal, but my CRP was too low for my CDAI and the CT scan showed no Crohn's, go figure that! I looked at the pictures and they look just like the ones that show I do have CD, so i'm not sure what's up with that.

thanks!
Posted 7/10/2008 8:16 PM (GMT 0)
For anyone on Tysabri, Supposedly there are some neuro things/questions that get done before you start? Can anyone enlighten me? For instance, if you're one of those people who gets to the end of a sentence and forgets what you're talking about, or thoughts come into your head and immediately fizzle out, are those things they worry about?
Posted 7/11/2008 2:28 AM (GMT 0)
Prior to every infusion that ask you if you are sick have infections, are taking any non approved medicines and if you have had any lapses in memory since the last infusion. Thats it, then you wait two hours, one for the infusion then one for them to make sure your okay.
Posted 7/11/2008 3:38 AM (GMT 0)
I always forget all sorts of things. I remind myself constanty that I did this *before* Tysabri! It's not gotten worse in any way. Since it's just a normal part of life for me, I don't worry about it.

Oh!!! I am now officially in "clinical remission!"!!!!!! My bathrooms trips are at 2-3, no pain and CRP of .7!!! I have averaged about 25-45 and up to 60s last summer. And, my white blood cell count was normal too! WooHoo!!! I've quit the budesonide suppositories. In two weeks I am supposed to quit the antibiotics (Xifaxan). Tomorrow is infusion #5.

I am so very happy! It's been a year and 7 months of agony... :-)
Posted 7/11/2008 12:45 PM (GMT 0)
ok, you're making me feel better. I need to do something, as I don't want to stay on Entecort much longer, it has already been over a year. I'm one of those people who takes a new medicine and before the pill hits my stomach I'm imagining the side effects. I just had 2 days of feeling "blech, little appetite, fatigue, etc. and I want them to stop!
Posted 7/11/2008 2:00 PM (GMT 0)
Tysabri has been wonderful for me. Without it Im not sure where I'd be, this time last year I feared dfor my job, and now I just got promoted. The only side effect it gave me was a mild headache on infusion day.
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