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Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 7/19/2008 12:12 PM (GMT -6)   
Hello to all!  I just found this forum, and wanted to introduce myself.  I am Laura, 33 years old, SAHM of 2 girls, ages 3 and 20 months, diagnosed with UC after my second daughter was born, in early 2007.  At that time, I was diagnosed with a mild case, limited to the sigmoid colon.  Went into spontaneous remission briefly in the spring of 2007, then over the summer started having problems again.
 
Long story short, I was hospitalized in April of this year, transfused and started on prednisone (40mg).  At that time, I switched GI practices and my new GI got me started in a trial for Humira.  I responded within the first week of the trial, and am now tapering off of the pred.  I am down to 15mg/day and things are getting a bit bumpier as I am moving down.  I may have to slow the tapering even more. 
 
In addition to the 15mg of pred, I am also currently getting the bi-weekly injections for the trial, and am on 6 pills of Asacol/day.  Also still on iron, but I have been told my levels are getting to close to a point where they will let me stop that soon.
 
I am looking forward to getting to know everyone here!
 
Laura

potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 7/19/2008 1:16 PM (GMT -6)   
Welcome Laura, Glad to hear that the Humira is working for you, Its something I have never taken ,so dont know much about it. But wanted to welcome you to the forum. Hope you can get off the pred soon. This is a great site, with alot of good people that is willing to answer any and all question. I have learnt alot from here.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/19/2008 1:47 PM (GMT -6)   
Welcome to HealingWell, Laura. You'll find this group really supportive and get a lot of new ideas here. Sometimes it's just nice to know you're not the only person going through this.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 7/19/2008 6:44 PM (GMT -6)   
Thank you Rona and Judy for the warm welcome! Judy, you are right-it is so nice to be able to hear others' stories and know you aren't alone. As supportive as my friends and family have been, it just isn't the same as knowing someone who is dealing with similar circumstances.

Rona, Humira is adalimumab and my GI doc told me it is approved now for RA and Crohns, and they are having great luck with the UC clinical trials. There are 8 people (I believe) currently in our local trial group, and everyone has been responding well. So far, only one person had to be switched over to open label at 12 weeks, and they said after he switched over, he improved quickly as well. Reading the list of potential side effects is a bit scary, but then it is allowing me to come off of the prednisone, which is scary stuff in and of itself! So I am really pleased thus far with the progress I have made.

Thanks again for taking the time to welcome me!

Laura

potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 7/20/2008 1:19 PM (GMT -6)   
Yes the side effects to most of the meds we use are scary.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 7/20/2008 9:35 PM (GMT -6)   
Hi Laura and welcome. I am sure you will like this supportive group. I sure do. By the way what does SAHM mean? I have no idea and was just curious. Thanks, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


ChiCubs7
Regular Member


Date Joined Jul 2008
Total Posts : 24
   Posted 7/21/2008 5:00 AM (GMT -6)   
I think it means "stay at home mom."
Ken

Seborrheic Dermatitis diagnosed Jul 08
Left Sided Ulcerative Colitis diagnosed Jan 08
Minimal Change Disease diagnosed Feb 06


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 7/21/2008 10:35 AM (GMT -6)   
Hi Supa,

Welcome! Tapering pred is a bumpy road, I am doing it by 5mg a week, will go down to 25 tomorrow. Hope you are able to taper sucessfully.

Question about the Humira trial, how long is the trial and how do you get humira once the trial ends if not FDA approved yet for UC?

Thanks!
Beth
Beth, 32 ~ hoping to taper pred successfully, wish me luck!
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 30mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 7/21/2008 11:11 AM (GMT -6)   
Lori-yes, SAHM means stay at home mom, as Ken said. Sorry! I am a moderator on a mom's message board, and I tend to use the abbreviations everywhere I type now without even thinking about it. Sometimes I get email replies from friends asking me what in the world I was saying!

Beth-the trial is for a year, so I will be in it until next April. After that time, they have an open label study that we can enter into so that we can continue getting the meds until approval. Which is great, since as long as we are in the study, it is free! My personal issue with that is that my husband and I want to have another baby at some point and were thinking about next year sometime after the study is over, but that brings up a lot of questions for me. I have to be off of the Humira for a while before we can try for another, and if/when I would potentially get pregnant again, I am out of the study. And once you are out, you are out. (Not that you asked for any of this information, of course!) So on the one hand, I think it is great that I can keep getting the medication through the study, but on the other hand, the sooner it gets FDA approval, the better for me in terms of adding to our family since I would be assured of being able to get the med after the child were born.

Their first trial patient is due to celebrate the year mark this fall, so it is a pretty new study. I think that in our local study, I was the 6th person to come into it, and I think they will need most, if not all, of us to get to the year mark before there is the potential for progress in terms of approval.

But at this point, I am just trying to focus on getting off of the prednisone and am glad I doing so much better. I wish you good luck tapering off yourself!
Laura
 
33 years old
 
Diagnosed in 2007
Currently on prednisone 15mg/day and tapering, Asacol 6pills/day and biweekly injections for Humira clinical trial


rocal
Regular Member


Date Joined Jul 2008
Total Posts : 41
   Posted 7/21/2008 12:44 PM (GMT -6)   

Hi Supa,

 My 2 yr old son was diagnosed in Apr with UC. I found this site a week ago I've learned more this past than in the last couple of months from reading. I read what everyone else uses ask questions and everyone is wonderful and caring. I don't know what my son feels all he can say is "tummy hurt" so when I get to talk to the adults that have it I kind of get a better ubderstanding. Right now my son is only on Probiotics he's had to many reactions so far  to other meds. His GI wants to give him a break and see what happens so far he's doing good. He normally has a flare up every 3 weeks but it's been a month or little more now so it's a wait and see now. I hope everything goes well for you and you find as much support out of this site that I have.


 Robin mother of 2yr old son diagnosed in Apr this yr with UC
 He's only on Culterella as of now

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