Going on Tysabri soon! Any advice or experiences! Scared!

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northernguy
Regular Member


Date Joined Oct 2007
Total Posts : 39
   Posted 4/8/2009 2:02 PM (GMT -7)   
Hi all - Wondering if anybody can give me some advice on Tysabri. I will be going on it soon and would like to hear from others that have been on it. Saw my doc today and he is also putting me on TPN for a couple of months so that I can gain some weight, I was around 170lbs when healthy and am now at only around 133lbs. I was also in the Prochymal Phase III study, which i have a CT and exam tomorrow for my one year follow up. Prochymal worked great for me when I was on it but cant get it anymore.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 4/8/2009 2:10 PM (GMT -7)   
Wow. I'm 130, but my GI and surgeon have never brought up TPN. I'm 5'9", how tall are you? Are there any risks to TPN?
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.
 
Go Saskatchewan Roughriders!


northernguy
Regular Member


Date Joined Oct 2007
Total Posts : 39
   Posted 4/8/2009 4:49 PM (GMT -7)   
Hi- I am not sure what the risks are with the TPN , but I would guess its fairly safe cuz they do it alot at hospitals. The risk that I would guess would be the greatest would be infection entering the PIC line. My doctor is a great guy and actually is interested in hearing me out and is dedicated to helping me out. I couldnt ask for a better doc, but it took me the better part of three years to find him. I was glad that he wanted to get me on the TPN because I would love to weigh at least 150lbs . At 133 , I look like I have just came out of a concentration camp, I am also 5 9. When I was healthy 4 years ago, at the age of 24, I was around 170lbs and had a pretty athletic build. I cant look at pics of myself from back then cuz I almost cry every time, just look like crap now. Anemic and tired 'pale and just gross. Hopefully between the TPN and the Tysabri I can at least get back to work. Been off since Feb 17th. Wish I could get the Provhymal.

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 4/8/2009 7:45 PM (GMT -7)   
Good luck with it! I read it takes 12 hours, can you do it while sleeping? Sorry, slightly off your topic here, but at least I'm bumping the thread for you! :)
32 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. 17.5mg prednisone. Udo's Choice Probiotics (30 billion). Can't tolerate any iron supplements or infusions.

Tried SCD, didn't work, now avoiding gluten and dairy.
 
Go Saskatchewan Roughriders!


SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 4/8/2009 11:40 PM (GMT -7)   
Just wanted to wish you luck Northernguy.
All these nasty meds are scary and I myself am looking at Humira soon, which scares the crap out of me.
Im trying for something to get me through the years till the Prochymal is approved in Australia (say roughly another 2-3 years after the US approves).
Keep us posted on your progress.
Jo

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 4/9/2009 1:44 AM (GMT -7)   
Hi Northernguy, I was on TPN in Jan for three weeks my surgeon wouldn't operate on me because i was so underweight like yourself i am 5'9 and the weight loss looks worse when your tall The TPN was great it ran for 24 hours a day they give you a bag of IV vitamins as well i was then weighed twice a week it didn't take long to gain some weight and i fels so much better after it. goodluck let us know how you get on Bev x

crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 4/9/2009 1:46 AM (GMT -7)   
Sorry Northernguy you didn't say you were 5'9 it was the next post my mistake x

northernguy
Regular Member


Date Joined Oct 2007
Total Posts : 39
   Posted 4/9/2009 7:25 PM (GMT -7)   
Hopefully it goes good, they are in the process of setting it up. I hope I am not tied to that darn IV pump 24 hrs a day cuz I hate dragging those things around. I think just the extra nutrition and vitamins will make me feel 10 times better , along with not having to push so much digestion through my system.

jid
Regular Member


Date Joined Apr 2005
Total Posts : 103
   Posted 4/11/2009 8:26 PM (GMT -7)   
Tysabri is a very easy infusion. 1 hr for the drip, 1 hour to be observed. make sure you have eaten something before you go to avoid an infusion reaction. Most of my fellow tysabri-taking buddies have not had any issue w/ the drug infusions. one gal who was on the drug study for it (stopped it, then later went back on) wasn't able to get back on. she developed serious joint pain.

i've been on it for 13 months now and i'm off of steroids and feeling 'manageable' overall. Oh yeah... it took about 8-10 weeks before i noticed any impact at all from the tysabri. apparently that is normal. so don't expect overnight results.

good luck!!!

northernguy
Regular Member


Date Joined Oct 2007
Total Posts : 39
   Posted 4/12/2009 11:44 AM (GMT -7)   
Good to hear that the tysabri infusion seems to go well. I dont know exactly when I will start because they have to go through all the insurance stuff first and I am sure I have to fill out a bunch of paperwork also.

Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 4/13/2009 5:58 PM (GMT -7)   
jid said...
Tysabri is a very easy infusion. 1 hr for the drip, 1 hour to be observed. make sure you have eaten something before you go to avoid an infusion reaction. Most of my fellow tysabri-taking buddies have not had any issue w/ the drug infusions. one gal who was on the drug study for it (stopped it, then later went back on) wasn't able to get back on. she developed serious joint pain.

i've been on it for 13 months now and i'm off of steroids and feeling 'manageable' overall. Oh yeah... it took about 8-10 weeks before i noticed any impact at all from the tysabri. apparently that is normal. so don't expect overnight results.

good luck!!!

I have to agree, although I noticed an improvement in around 3 weeks. I have been on it for 12months and I fell great

northernguy
Regular Member


Date Joined Oct 2007
Total Posts : 39
   Posted 4/13/2009 6:31 PM (GMT -7)   
Mac_Gyver- How did you feel before you were on the Tysabri? Were you ill for years? Also, I am just wondering what feeling great means because I haven't felt like that in 4 years!

OriginalAreU2
Regular Member


Date Joined May 2007
Total Posts : 89
   Posted 4/14/2009 9:48 AM (GMT -7)   
Yes, please keep up posted on your experience with Tysabri.
I inquired about it to my gastro, and he still is pushing me towards Humira.
He said he doesnt know enough about Tysabri.
I would love more input from others also!
Good Luck
 
 
Diagnosed 4 years ago. been  a helluva ride since.  If there is a side issue to this dd I can find it.  I suffer with Pyoderma Gangrosum and horriffic mouth ulcers that get to the point I can't open my jaws.  Last one was nice enough to create a fistula and  add to my list of fun things to deal with.
Been on all kinds a things, currently on Imuran 50 mgs and it at least give me some confidence in leaving my home.
Allergic to Remicade. Promethius test shows my body fights it.  Also suspected to have PBC or PSC  autoimmune liver disease.
 


Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 4/14/2009 2:48 PM (GMT -7)   
northernguy said...
Mac_Gyver- How did you feel before you were on the Tysabri? Were you ill for years? Also, I am just wondering what feeling great means because I haven't felt like that in 4 years!

Great to me is how I felt before I got sick. I have been lucky enough on tysabri that I can eat whatever I want. Since being on tysabri I have only been reality checked once and reminded that I have crohns. I'm so glad I went on tysabri.

northernguy
Regular Member


Date Joined Oct 2007
Total Posts : 39
   Posted 4/15/2009 6:10 PM (GMT -7)   
Wow, great to hear that u are doing so well on the Tysabri Mac_Gyver. I hope that I have the same sucess!! I should be starting it soon. Right now I am in the process of filling out the paperwork for it.
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