Tysabri

[Zman]

Hi all
Its been awhile since I've been here but wanted to give an update .
I have been on Tyabri for 7 months now. I have gone from 145lbs to 190 . All muscle since I work out quite a bit. I eat everything and have no pain or complications. This is most wieght I have ever carried. The other side of this is there were 5 of us in my Drs offfice that started Tysabri , I'm the only one left on it . So lucky I guess any way the drug so far has been a God send . Its the "ONLY " thing I am taking for crohns.

 

[D Bergy]

That is good news!

I am always happy to hear of someone that has found a treatment that works for them. I know what it is like to lose weight because of Crohn's. It is a very good sign that you have been able to get to a more normal weight.

I am curious as to why the other four patients have quit using the medication?

Dan

 

[kromom1]

That is great Zman! I am curious about the other 4 patients, too, as I am considering trying Tysabri. Do you have any side effects from your infusions of the medication, and are you getting it once a month? Thanks for any information you can give me.

 

[saidinstouch]

I just started this a couple weeks ago cause I don't respond well to the TNF inhibitors. How did you deal with the concerns of PML? Everytime I stutter a word or forget my train of thought I keep asking myself if it is worse than my usual absent minded self. Did that get better for you over time?

 

[kello82]

thats great Z!
so glad you gained healthy weight back.
im curious too, why did the other 4 stop the treatment?

@saidinstouch--in regards to the stutters, forgetfulness, or lack of coordination...stuff like that, i went thought the same paranoia when i was on it. anytime i couldnt find my words the pml was in the back of my mind.
of course i ended up fine, no ill effects at all the entire time i was on it. so try not to worry TOO much i guess, but worrying also helps us to keep tabs on it, and this is definitly something to constantly evaluate. youre not alone in it though!

 

[ErinDF]

Hello,

Great to hear about the Tysabri working...I've been on it for 8 months, but I've also had an ileostomy for 7 of those months, so its hard to know what is responsible for the improvement. Hopefully its the tysabri!

Saidintouch...if it helps any, my doctor told me at my last appointment with them that the last couple cases of PML there were (I think in MS patients) actually didn't die. They've found that if they treat it quickly with plasma infusion, then can get the medicine out of your blood quickly. I know its still a scary side effect, but try to remember that it is both (a) rare and apparently now treatable.

Erin

 

[kello82]

oo thanks for that info erin.
thats good to hear that theyre finding ways to treat it.

 

[kromom1]

Yeah, that makes it see a little less scary!!