Started tysabri

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kello82

kello82

Joined
Nov 12, 2008
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well so after a very long insurance confusion i finally had my first dose on friday january 30.
i thought id try and keep a thread of how im feeling in case anyone else needs info on the drug or questions or whatever. and also to notice any changes for myself

no reactions during the infusion, it was real easy and took an hourish maybe. that night i spiked a fever almost 103 and called the doc next day. it hasnt happened again though, so it seems it was just my crohns being itself. its not uncommon for me to randomly spike sometimes. annoying coincidence though.

ummm so not really much change in how ive been feeling yet. had what seemed like a more normal bm this morning and also got more food down than i have at one meal for weeks tonight! so today was a decent day but im not ready to attribute it to the med just yet. too soon to set up expectation.
 
Good thread Kello.
Do they say how long it usually takes to kick in? My Humira was surprisingly fast. On day 6. Some people say the Remicade kicks in during the first infusion, so yours could be working already, I guess.
Good luck - I hope this is the magic trick for you!
 
Hey kello,

Want to start a tysabri club? I feel so left out of the fun Remicaide club posts. ;)

Hope it went well. I look forward to hearing about your progress (I haven't had any side effects yet...lets hope it stays that way).
 
thanks everybody!

MBH- i think they dont really know how long it takes to kick in. i asked and he said some people notice right away a diffference, but some need a second dose for it to kick in, and some need a third. agh!

Erin- haha sure! its gonna be one small club though! hehe just you and me i think.
 
I know...a small, but awesome, club. I think we should just start posting lots of awesome (though *arguably* untrue things) about Tysabri...such as the well documented fact that every Tysabri infusion comes with a puppy. Then all the Remicaide folks will be soooooooo jealous they'll want to be in our club. We'll only take the nice ones. ;)
 
allright well tommorow makes 10 days since my first dose.
and im happy to say that i have been having mostly solid poo starting on wednesday! well, solid for me means mushy, but its not pure liquid anymore!

im excited about it, but im scared that im excited. i hate hoping for things, bc the letdown is worse and worse everytime. ugh. i need a thereapist lmao

annnd ive been slightly ENJOYING the taste of food. i ate a real breakfast today. egg and toast with bacon and it was delicious.

bad news- my butt hurts. no not you mbh lol, i mean MY butt hurts. my fistulas have not been infected, but the tracts are still there and they feel like somethings collecting again. soreness and a little pressure. ugh, is this cause of the immunosuppressant or just random for fun? i hate it when things happen coincidentally like this.
boo. ill be seeing GI on friday for 2 week checkup, so i guess hell get a good looky.
 
Hey Kello,

I'd be surprised if your fistulas acting up were because of the tysabri, since I think tysabri is supposed to help them. I'd predict a coincidence if nothing else...though that super sucks. My next infusion is Thursday...i'm sure it will be a thrilling hour and a half. ;)

kromom -- you get Tysabri once every four weeks. Or at least, I get it once every four weeks.
 
kromom- thank you! and yup same for me, 1 infusion every 4 weeks.

erin- hmm, yeah its kinda like a catch 22 i think. the medecine is good at healing fistulas, but hinders your bodys ability to fight infection. which is what causes the fistulas in the first place for me, an abcess in my colon. so whats good for the crohns is bad for infection. but the infection is caused by the crohns. argh! lol
 
just an update-

had my 2nd infusion today. once again, it was pretty uneventful. they could run it a bit quicker this time since ive been reaction free.

so i think i have been feeling better since my 1st. appetite up, weight up a few pounds, more energy (enough to empty the dishwasher once yay!).
but the past 3 or so days ive felt worse. i had a lot of D yesterday for the first time since my first infusion. and my guts have been doing weird flip flops again, those had stopped for a while. im wondering if its like remi and it kind of "runs out" as you get close to your next dose?

hmm. we'll see i guess.
 
i'm glad you're feeling better overall! hopefully the last few days have just been a fluke. my fingers are crossed that you continue to improve!
 
Kello - don't go showin' off and emptying the dishwasher. They'll expect you to keep doing it.
Hope you feel even better after this one!
ErinDF said:
...such as the well documented fact that every Tysabri infusion comes with a puppy. Then all the Remicaide folks will be soooooooo jealous they'll want to be in our club.
Click to expand...
Oh yeah - we'll REALLY be jealous of your puppies after your 8th infusion or so. :tongue:
 
thanks for the hopes kim and rhov :)

lol mbh, you have a point. i think erin did not think that one complelety through hahah.

but here this will amke you totally JEAL!
every tysabri infusion enters you in to win a trip to hawaii where you will spend the entire time with danny gokey.
o0o0o and private performances....

and since not many pple take tysabri- erin, you and me got good chances girl!
 
kello82 said:
lol mbh, you have a point. i think erin did not think that one complelety through hahah.

every tysabri infusion enters you in to win a trip to hawaii where you will spend the entire time with danny gokey.
o0o0o and private performances....
Click to expand...
Well I read the fine print and it says that you get to take a friend. Who ya gonna take, me or Erin?? (Remember - I make you laugh your ASS off!)
 
Kello and Erin - Just wondering how it's going with the Tysabri? As you may or may not have read in the Remicade club thread, I'm now out of that club after a horrible reaction and hospitalization. I'm back on high-dose pred and the doc has mentioned Tysabri as a possible next step. Maybe I'll be winning that Hawaii trip!! See the GI again April 8th, so I guess we'll be making a new plan then.

Lisa
 
aw lisa sorry to hear that the remi failed. i always hope that it will help people like it helped me

umm tysabri is going bittersweet i guess. i had my second dose on friday feb 27. still no reations which is good. but about a week before the infusion i started feeling my symptoms returning- diharrea, throat/stoamch ulcers, sores on my lip, no appetite, sinus inflammation..... i was hoping that my body was just running out of medication and that my 2nd dose would give me a boost, but it is now 2 weeks later and i still dont feel any different. im back to how i felt before i even started the tysabri agh! well i guess not as bad, but i feel like im heading there.

anyways. it seems like its not really working at this point in time. but i have an in-between dose appt on thursday so i guess we will see.
 
Aww - that sucks Kello. Remember though - you said that some people take up to the 3rd infusion to feel better. You're halfway to your 3rd one - so I hope that does the trick! Can they up the dose like they can for Remi??

On a side note - I thought of you at work today. A kid was trying to read cello of off a poster, and he pronounced it kello. Yay!

Good luck at your appt. Thursday.
 
Kello - I'm sorry it's not working very well for you, but like MBH said maybe it will kick in more with the 3rd infusion. I will keep my fingers crossed for you!

Lisa
 
Hi Kromom1,

I have been on Tysabri since September now and I've gotten ALOT better, but I also had a temporary ileostomy at the end of October, which has certainly helped. In May I will have my ileostomy reversed and then we will see how I do on just Tysabri (the hope is that it will keep me in remission once I've gotten there).

Kello -- sorry to hear it hasn't been working so well. Remember to keep the faith! :)
 
yup yup keepin the faith sistas!
lol like ive mentioned elsewhere- im finally cool with the idea of getting bagged. so still hoping that the tysab kicks in, but im ready for it not to at the same time. (i say this now, but i know that leading up to srugery i would be a total wreck lol)
thanks for the thoughts and hopes, girlies :)

@mbh- LOL! the same thing happened to me the other day! i saw a liscense plate that had was ###-MBH and i was like ahhh! ahahah
 
Hey Kello, hope it turns around for you.

I just visited my GI today and he dropped the bag bomb on me today, and he also mentioned Tysabri, but he referred me to another GI for another opinion
 
Hope it gets better and better for ya, from reading though all the post's you have wrote, I'd say you definately deserve a breakthrough gurlie! Thankx for bringing this little known of treatment to my attention, yet another one to write down and take notes on to pass along to my Dr. Keep us up to date and let us know how it goes. This is another transfusion option I read...those seem to be the ones that make me the most light headed. The nurses and Dr's around here seriously can't hit a vien for nothing! Wont go into detail, but I could aim a needle better than most of them, and it is sad when you actually sit there and have to tell them what one will work and what one wont lolz!
 
thanks bill-i hope your 2nd opinion goes well!

lol mrae i hear ya girl! you have to tell them which vein is the best and then half the time they dont listen and do whatever one they want. and of course they end up being wrong and you go home with big black and blues. gahh!
 
tommorow will be my 3rd dose. maybe. i had i high fever yesterday and called them today to make sure the dose would still be a go, and he wants to see me first and then make a decision.
i honestly feel like i could care less whether i get it or not. the second dose did NOTHING and ive just been going downhill-fever, diharrea every frickin hour, nausea, eating pains, and everything i eat makes me burp and want to throw up. its like i didnt even get the drug, just a bag of saline. i feel like my body is slowly shutting down, its just giving up. a flight of stairs takes every bit of strength i have in my legs.
SO, needless to say, i am not doing so good and feel a little bummed but ready for whatever is going to start working NOW. im tired of the try a drug and wait and see method, and frankly i dont think my body can take it anymore.
my dad thinks i should just start some pred. its always helped me put on weight. im just dreading the withdrawal though, but probably its not any worse than how i feel now.
i think i want a temp ileostomy asap. but do you start to feel better right away or do you feel like hell for a long time as you recover? i dont need to feel like hell anymore.
i think tommorow will be farewell to the tysabri.
we will see.
 
kello82 said:
i think i want a temp ileostomy asap. but do you start to feel better right away or do you feel like hell for a long time as you recover? i dont need to feel like hell anymore.
Click to expand...
Awww, I'm sorry you feel like such crap. I think I have read that some people feel better right away with an ileostomy. Your body may feel like hell from the surgery, but it's a different hell than what you are feeling now. Almost an "it's so worth it" kind of hell, you know? Cuz it will just get better a bit each day? Sounds like that actually might be a good next move for you - I know you've been thinking about it a lot.
My husband's grandma had it done, and then the reversal - so I know it can work! (Not for Crohn's - no idea what for actually, it was quite a few years ago - before I cared about anyone else's belly problems..)
That being said - is there anything you haven't tried yet?? Soupdragon has good luck on the elemental drinks. It would be hard of course, but it might be worth a shot before surgery.
Also - what are your pred withdrawals? Any way they can wean you off slower or something so it doesn't happen? I always have very good luck wityh pred. I wish it worked so well for everyone else.
Hope something turns around for you, you really need a break!
 
Oh Kello I feel so badly for you! I know how frustrated you are, as I can't seem to find the right treatment ether, though I am not going through as much as you are with the diarrhea, fever, nausea, pain, etc. I hope you and your doctor can figure out a good plan of action for you today. Good luck, and let us know what happens.
 
So sorry to hear that Kello! I hope you figure this thing out!!! I think surgery may not be a bad idea for you... but I can't make that decision obviously.
 
thanks everyone! i really appreciate the love :)

@mbh- when i tapered it was 1mg at a time already and it was still bad--migraines, nausea, high fevers (like 102+ range). and bad bad mood swings. and as far as elemental im not sure really, we never really talked much about it but the main thing was that once you start eating real food again the symptoms come back. or he suspected they would for me at least.

@kim- yeah cimzia is just about the only drug i didnt try, but since it was pretty much the same as humira and i didnt respond to humira at all, GI didnt think it would help me.

soooo now it is on to the "surgery time" thread. everything new is in there.

and if anyone searches and finds this thread for tysabri please dont be discouraged! i feel like my story here is not one to give much hope to anyone starting tysab, but it has really helped some others i think. it was definitly worth a try for me and everyone responds differently.

well then---[end tysabri thread here]
 
ok thanks! surgeon indicated pretty much the same thing today.
but i believe it more coming from you, someone whos been through it.
 

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