UPDATE - Blood Pressures & Steroids - May be kicked out of the clinical/looking for new treatment

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Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted Today 11:01 PM (GMT -7)   
Hey All,

Thought I'd quickly update here. I'm VERY nervous about my new situation.

I saw my GI on Friday (He's a study doc in the clinical). He firmly believes the steroids are increasing my pressures too, lovely. So, he said we had not choice, but to go off of them. They are submitting all my information to the pharmaceutical, as the 12 week induction period is not over yet. There is a CHANCE I could be kicked out of the study because I'm not supposed to alter my meds during the 12 weeks. We'll hopefully have an answer tomorrow sometime. In the meantime, my surgeon did NOT refill my pain meds and I'm rapid weaning off steriods for the sake of my pressures (30mg to 15mg, then 15 to 10, and 10 to 5, and stop). I'm already noticing more gas and pain and mucous. Not good, I was barely holding on the 30mg to begin with.

I"m excited to get OFF the steroids because they do so many horrible things to me, but in the same token, I have NOTHING to control my Crohn's right now, as we do NOT know if I'm getting the drug or not (ABT-874). As soon as we hear from the study on Monday, then the GI can make a decision as to what to do. He said we'd use a non-steroidal drug, but I have no idea what is left to try... I'm nervous.

Any insight on what is out there? I have aggressive Crohn's...it's primarily located in my rectal and sigmoid, but it is located throughout my large intestines and a chance it is in my TI. I've done Colozal, Entocort, Pred, Bentyl, Remicade, Rowasa, Steroid enemas, and a few other small things...that I'm having trouble recollecting on....

I think the trouble with treating my disease is that it is so severe and nothing seems to get the inflammation down except steroids and biologics. We considered Tsaybri a few months back, but I'm nervous about that drug. I know we are looking at quality of life here, but I have a little girl to take care of...and I just cannot even begin to imagine her growing up without a mother should something happen....
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
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 - 13 months old


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 12/8/2008 2:43 AM (GMT -7)   
Kaycie, have you tried Humira or Cimzia yet?

Also, the Prochymal trial is still open, according to its website. It would be brilliant if you could get in that trial - this drug sounds very, very promising.

I'm sorry you're in such strife.

Ivy.
Co-Moderator Crohn's Forum.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/8/2008 3:50 AM (GMT -7)   
Hi Kaycie try not to get too nervous yet and hope your taper goes good. Maybe he is talking Imuran. Hang in there and see what they decide. Keep in touch.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 12/8/2008 8:26 AM (GMT -7)   
Thanks for the info....haven't heard anything yet...

These are the drugs we've discussed, but I'm not sure which road to take..

Tsaybri
Cimzia or Humira - though they say I only have about a 20% chance of it working since I failed Remicade
Imuran - Not sure if it'd be effective ENOUGH right now....

I think the only one there I'm concerned with is Tsaybri. I'm open to the others, but I'm just afraid it's going to be another 2 months of hell before I get relief...and since I'll have nothing "holding" me over... I'm just wondering what it's going to be like.

Ivy - Thanks for the study info. I'll have to check into that. It took me a full week to get approved for ABT-874. So, I'm not sure if I could swing another study, but I may still be IN the study, and if I am..then we have to see what list of drugs they would allow... if any. If they won't allow any other drugs, my doc will pull me from the study, plain and simple.
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
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 - 13 months old


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 12/8/2008 2:44 PM (GMT -7)   
Big hugs, Kaycie. It's so hard being medless and vulnerable.

Do you have enough energy and mobility, now, to start getting ahead on housework and Christmas preparations and stocking your cupboards and freezers with some emergency items to tide you over in case you do start to flare again?

Ivy.
Co-Moderator Crohn's Forum.


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 12/8/2008 5:39 PM (GMT -7)   
ivy6 said...
Big hugs, Kaycie. It's so hard being medless and vulnerable.

Do you have enough energy and mobility, now, to start getting ahead on housework and Christmas preparations and stocking your cupboards and freezers with some emergency items to tide you over in case you do start to flare again?

Ivy.


Afraid not Ivy. I went home sick from work today. Slept aroudn 16 hours yesterday. I'm falling apart FAST.

The good news is that I can work from home partly, which I might do. I work for my parents, so I just need to work that out. It's winter-time, so we are slow, another blessing in disguise. The other good news is that I have 99% of our gifts bought and wrapped. I usually always make a bunch of holiday goodies, so I might throw a few batches of dough together and freeze it and then all I'll have to do is bake. I might even be able to con DH into mixing the dough for me and helping with that. I've let a LOT of cleaning go....I mainly just try to keep the areas that my daughter plays in clean. We only put up some of the decorations this year and my husband is good about tearing things down after Christmas. May not be able to find it next year, but he's good about that. All I have left to do is hang the 3 wreaths on the windows...he put all the outside lights out and they aren't perfect, but they look fine to me this year...

I do need to decorate my daughters tree...and get her laundry caught up, but I've been having my husband help me wash it and then folding it all from the couch. Luckily, her Grandma has bought her enough clothes that she could literally go a few weeks before I even have to THINK about washing her clothes.

My only main priority left for the holidays is to get her to see Santa and to get her Sister's grave decorated. If I need anymore gifts, I'm going to do it from the convience of the home computer. I already have my Christmas cards and just need to address them...again, something I can do little by little.

I stay pretty prepared for the holidays because I'm a busy person, so I'm "ok" for the most part there. I may have to live and let go a bit, but I'm doing.

"Vulnerable" is exactly how I'm feeling. My surgeon did call me in 40 more Norcos today. I'm going to call his nurse tomorrow and get an appt to see him this week or next and discuss pain management. I want to do all I can to stay out of the hospital. I think with fluids, easy foods, and the Norco, I can STAY out of the hospital. It's going to be a tough few weeks, but I've done this before....the main thing is pain control... it seems to be my weakest point. I handle pain TOO well ....so I tend to put it off FAR too long..and then things like being rushed to the hospital via ambulance happen. That was a very scary situation. I've never been in an ambulance...and I felt like I had an obstruction (turned out to be SEVERE inflammation and my colon was having spasms - NOT a good combination). My husband had to pull our daughter from bed at 3am and put her i her carseat and it was just awful. I have nightmares of that happening again..and all I want to do is prevent an ER visit by managing this at home. I have faith I can do it. As one of the docs told me... if you need something stronger the Loratab, you need to be in the hospital. So, I'm taking LESS then Norcos and I can max at 12/day, but only take around 4. So, I'm managing at home, but GETTING the meds has been a nightmare.

Still no news on the study. Apparently, the people they need to consult with is in Germany, so I'll know something tomorrow.

Thanks for the support Ivy. I feel like I'm falling apart at the seems right now. The holidays are tough enough not having my daughter here, but this just makes it that much worse. I typically can hold it together, but I just feel a lot of anxiety and depression right now. Depending on the results of tomorrow's answer from the study, I'm going to call my primary care physician and have her up my Celexa or put me on something else. I just can't do this.. I need something stronger.....
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
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 - 13 months old


Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 12/8/2008 5:47 PM (GMT -7)   
Oh, and I stockpile for the most part. I started doing that about 3 years ago when I was dx. It really helps in situations like this... never run out of the essentials and get stuff on mega-discounts sometimes! I did have to get my daughter milk tonight, but luckily, she's easy as far as that goes. If I run out of whole milk, as I did over the weekend, she drinks everything from 1% to 2% to whole milk. She's such an easy little girl with a LOT of stinkin' energy tho! But we really have to strive to keep her on whole milk because she is low on weight (catching up, but still needs the extra fats) And, she's a good eater, so I can feed her just about anything. I did pick up some fast meals for her. I picked those up on Friday and she's easy for breakfast...eggs and toast.

If I only had a milk man, I'd be set for not leaving the house for a few weeks.... The other good news is if I DO end up in the hospital, my mom has clothes, diapers, etc....so between her and my husband... (we did this in July), they pretty much can tend to her easily. Plus, she loves the extra attention. Like when I left work today, I just left her there....then my mom took her home and my husband came home (my parents and husband bowl on Mondays) and got her PJs and a sippy cup and they met out there...between the 3 of them and then a dear friend of ours, they are taking care of her there... I have a GREAT network of family and friends. So, I am well taken care of in that respect....
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, moving onto a Clinical Trial called ABT-874 - Tentative start date - 10/2/08 - 10/16/08  - Infusion, every 4 weeks.
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 - 13 months old


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/8/2008 6:54 PM (GMT -7)   
Hi Kaycie so glad your hubby is helping and sounds like you have alot done now. Have faith your Dr. will find something to help you with and things will work out. Just don't push yourself too hard. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail

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