Failed Humira in a record 2 weeks, onto Tysabri and POSSIBLY will be admitted

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/26/2009 6:15 PM (GMT -7)   
You read it right. I FAILED Humira in 2 weeks! That is just my luck. I had a severe flu-like reaction and then they gave me the option to continue or not, so I chose to continue (I felt I didn't have much to lose). WRONG! I ended up back in the ER for the 2nd time in 6 days. And, now, not only does my gut hurt (they d/c'd me with dilaudid, which is the problem and possible reason for admission), but my ENTIRE body aches from head to toe from the Humira reaction of joint/muscle pain.

I have barely been able to move besides up and down from the recliner to sofa to bathroom. I've been using a heating pad, but it's not working well enough. I spoke to my surgeon's nurse and she is a bit shocked I was d/c'd too so she's taking my case to the a different surgeon in the morning because mine is out of office until Tuesday. I'm afraid they are probably going to admit me tomorrow, yet I know it would be a good thing because I could get better pain relief at least.

So, I have to sign some paper for Tysabri to get the rest of it rolling. I'm imagining it's some sort of waiver since they had such adverse affects in the clinical. But, it's a last ditch effort to kick me into remission. They nixed Cimzia, I guess because of it's similarity to Humira, and it is down to Tsyabri or surgery. I had to choose the Tsyabri, because, as I told my surgeon's nurse, I've been in tears for the last week trying to figure this out. I'm scared to death and I think I'm more scared of being cut open. The good news is my surgeon's nurse told me that if Tsyabri fails, they could get me into surgery in 1-2 weeks, depending on it's urgency.

I'm not sleeping well, the pain is mostly unbearable, but if I don't move, I'm pretty decent.

Did anyone else get admitted under such a circumstance? I'm thinking it might be for the best. I've had 2 ER trips in 6 days...and both times had major meltdowns at discharge because I was TERRIFIED the pain was going to come back..and...it has..

Even on all the meds, I'm still having loose bowel movements. I'm drinking gatorade like a fish and STILL dehydrated. I'm just frustrated...ok, beyond frustrated!
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/26/2009 6:27 PM (GMT -7)   
Kaycie,
I failled it after two rounds too. That freaking lupus syndrome stuff is incredibly bad.
Good Luck with Tsyabri! I am going back to the MTX shot.
Keep Us posted.
Navy
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Mac_Gyver
Regular Member


Date Joined Aug 2007
Total Posts : 350
   Posted 3/26/2009 6:33 PM (GMT -7)   
Kaycie, sorry to hear about everything that has gone on but I hope that tysabri gets you the same result as the few of us on hear have. My thoughts are with you.

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/26/2009 11:45 PM (GMT -7)   
Navy - Can't go the MTX route until I'm out of TTC years...though I've heard good things with it.

Thanks everyone! I'm nervous about it all...
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 3/27/2009 5:34 AM (GMT -7)   
Kaycie...I'm so sorry to hear what you're going thru...I hope the Tsyabri works for you...I hope you have a good support system in place to help you thru this...
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/27/2009 5:43 AM (GMT -7)   
Kaycie, I am four years older then you are, but you are right if you are activitively trying to get prego then MTX is not for you.


Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 3/27/2009 6:46:01 AM (GMT-6)


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 3/27/2009 9:56 AM (GMT -7)   
MMMNAVY said...
Kaycie, I am four years older then you are, but you are right if you are activitively trying to get prego then MTX is not for you.
Yes, that is the problem. The GOOD news is we have 5 frozen embryos, so there is a CHANCE that we could use a surrogate. That would be very hard on me because I felt so great pregnant and loved every second of it.

So, we will see what Tsyabri does. My GI didn't seem to think MTX was right for me. Because I was pretty much against it from the get-go...I didn't ask many questions at all.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


malakai
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 3/30/2009 11:04 AM (GMT -7)   
good luck to you. I'm sorry it didnt work. Isn't it amazing how much hope we put into these meds and when they fail it's like what now. I'm on my 2nd dose of Humira and the side effects are kicking my butt but nothing like yours. hugs to you.
Newbie - 37 yrs old Diagnosed: 08/03/07
Meds:
Started Humira 3/14/09.... <crossing fingers>

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