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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/17/2008 1:27 PM (GMT -7)   
How is the remicade helping you?  Hope you are feeling better!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
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 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/17/2008 1:30 PM (GMT -7)   
I had my first infusion this morning. Besides a bruised hand from the IV, I can't tell any difference right now. The darn pred had me pretty stable - besides the pred side effects which keep getting worse... I'm going to taper my pred by 5mg a week and see how that goes. Next infusion is on July 1.

I'll keep you updated!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
30mg Pred until I get set up for Remicade
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/17/2008 1:31 PM (GMT -7)   
Strange - I updated my sig with my Remi info and it's not showing up...
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
30mg Pred until I get set up for Remicade
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5151
   Posted 6/17/2008 4:36 PM (GMT -7)   
Interesting, DG, about updating failure. My security system notified me a couple nights ago that "x-mas scan" virus was launched against my PC from HW Website!!!!!!!!! / Old Hat

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/17/2008 5:11 PM (GMT -7)   
It seems the updating for sigs is taking longer than it used to - it's all updated now ;-)

Never heard of x-mas scan... Strange!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
25mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
1st Remicade infusion:  06/17/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/20/2008 11:15 AM (GMT -7)   
Just thought I'd update before the weekend.

Feeling okay - just tired. But tired seems to be my norm!

Realized yesterday evening that I haven't had any urgency issues recently. Hooray! Poops are good - formed, and actually making my bum hurt after all of the D, etc - but that could be the pred I'm still on. Going to step to 20mg pred tomorrow. Will try to taper 5mg weekly. Last taper was 10mg every 10 days and obviously that didn't work. Called the nurse for a refill and left a message with my plan, so she can run it by the doc. At least I think I left that in the message...

The pred and water weight has me all depressed. I've never weighed this much and nothing fits! Drinking lots of water and hoping things will get better as I taper.
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
25mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
1st Remicade infusion:  06/17/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/20/2008 11:54 AM (GMT -7)   
glad you are doing better! That is great, hope it continues and goes really smoothly for you! Especially the urgency going away, WOO HOO!

The pred weight stinks and it also makes my ankles swell even more, I have a rehearsal dinner tonite, wedding tomorrow and bridal shower on sunday, I wont be wearing pants (way too hot anyway) so can't wear my compression stockings and will have kankles by the end of each event, super attractive! That's ok I had kankle's for my own wedding............

being tan has helped me feel much better about myself, don't know why, so maybe get yourself some self tanner and get a good glow = ) little things! or go get a mani or pedi and get a flower painted on your toes (always makes me feel a little better!)

Take Care!!!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
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 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/22/2008 6:23 PM (GMT -7)   
I realized late yesterday that while we were out boating yesterday afternoon I didn't even think about poo! No twinges in the guts, etc. Yippee! Not convinced it's the Remi - 'cause I'm still on the pred, but a good sign non the less.

I dug out my bottle of hoodia that I used in my last long pred stint. I hope that helps.

Yes, a tan helps! I'm a firm believer in sun block, but with all the boating we've done even sunblock hasn't kept the color away. Thankfully I haven't been pink/red lately!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
25mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
1st Remicade infusion:  06/17/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 6/22/2008 7:10 PM (GMT -7)   
Dawn, I'm so glad that you're feeling better. You deserve a break lady friend! I will cross my fingers that it's the Remi that is helping you. Can it really work that quickly??
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs), Hydrocortisone E's, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/23/2008 11:59 AM (GMT -7)   
I don't know if it is the Remi yet. Wishfull thinking wants it to be - but realistic thinking doesn't know.

Today I feel kind of "squishy". My eating was off all weekend - Friday night was a huge supper out with my husbands co-workers (I had my first drink in months!) - then Saturday was another huge supper with friends - Sunday was more relaxed with some snacking and only one "meal". So, I don't know if the turbulance is from that or the fact that I took a step to 20mg pred on Saturday.

So, I'm interested to see how things "shape up" this week.


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 6/23/2008 12:11 PM (GMT -7)   
Hope you are doing well?i have lot to catch up on!!
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/pred/colofac


       
            http://www.myspace.com/martybuzz1<FONT]


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/23/2008 12:21 PM (GMT -7)   
Beth75 said...
being tan has helped me feel much better about myself, don't know why, so maybe get yourself some self tanner and get a good glow = ) little things! or go get a mani or pedi and get a flower painted on your toes (always makes me feel a little better!)

Take Care!!!

I totally agree with this!! I think having a tan makes you look slimmer and more fit, and just overall healthier! I haven't gotten a tan in awhile, I'm always a little paranoid of a) skin cancer b) wrinkles and c) losing color in all my super colorful tattoos!! :P I have SPF 70 sunblock to put on my tattoos when I go out though and I just leave the rest to get as much color as I can, haha.

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/23/2008 1:04 PM (GMT -7)   
self tanner works or even a spray tan, you don't have to lay in the sun or a booth, though I have been (bad, bad, bad me!)

Dakota, hope you are just feeling squishy from all the food. I had a problem this winter when I was eating oranges everyday, and they never affected me before, it made me very squishy.
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
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 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/23/2008 6:43 PM (GMT -7)   
I did have spaghetti yesterday too - something I haven't had in a LONG time because of my GERD. I will have tortellini with olive oil, but usually no red sauce. I took a couple of fibercon tonight - haven't need those in weeks. So, we'll see how tomorrow goes :)

Fingers crossed!
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
20mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
1st Remicade infusion:  06/17/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/24/2008 7:05 PM (GMT -7)   
Today was better - stools were firmer - closer to what they had been in the few days before this set back.

I thought of another thing - I took a couple of swigs of Maalox on Sunday too. Then I had also starting taking some Hoodia (liquid) to help with the pred cravings.

No Maalox or Hoodia today.

Once again - we'll see how tomorrow goes... Such a waiting game.

I should know better than to get freaked out after one 'bad' day.
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
20mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
1st Remicade infusion:  06/17/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/25/2008 6:24 AM (GMT -7)   
blame it on the pred and you really are going through a lot, one day can mean a lot to us all, so I definitely understand.

I hate the 2 steps forward one step back of going into remission of this dd!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
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 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/25/2008 7:27 AM (GMT -7)   
dakotagirl, I had my first Remi infusion a couple days before you did, and my symptoms have fluctuated as well. There were some days which were "normal flare" days, other days w/ only one BM (gasp!), and the rest of the days were in between. Hopefully, things will get better after the 2nd infusion!
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (1st infusion 06/08), 2.4 g Lialda


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/29/2008 6:07 PM (GMT -7)   
Another update: Boating again yesterday - no thoughts of poo!!! My husband commented that I must be feeling better. I guess some of my actions have changed and I know my moods are better. I've been having, on average, two bms per day. They have been solid and firm! Hooray! I've been eating most of what I want - salads, pineapple, pizza...

I stepped to 15mg of pred yesterday - Saturday. This could be a telling week. Usually under 20mg of pred symptoms start to reappear. Next remi infusion on Tuesday.

I still am very tired. I'm hoping to build some "energy" since my body doesn't seem to be fighting itself so much. I know that physically I am getting stronger... Now if I could only DROP this pred weight...

I still feel "twinges" in the guts. I haven't had any urgency since my infusion. Friday night we ran some errands and I started feeling twinges, but didn't feel I had to GO and it was about two hours later that I finally HAD TO GO.

I'm taking it all as positive signs! I have big dreams of getting off of some oral meds as being on both Imuran and Remicade scares me - the chance for lymphoma is increase, yet still small. However, I'm waiting for a while (and my doctor's blessing) to start tapering meds beside the pred.
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  close to remission?!?!?
15mg Pred, Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
1st Remicade infusion on 06/17/08:  Next infusion on 07/01/08
 
Co-Moderator for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 6/30/2008 6:51 AM (GMT -7)   
Oh gosh Dawn, this sounds positive. I remember having the same thoughts whenever I'd get a twinge....it was like, "Am I going to start flaring again?" I would kind of panic, but now I don't really think that much about it. Sometimes I have a bit of urgency, but I've noticed that it's not much more than most people. It's great that you are able to eat and enjoy all the yummy stuff that you like! Hurray! Good luck with your next infusion; and thanks for the updates. I've been following them even though I haven't posted.
Carol

Remicade - will have my 22nd infusion on June 12.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/30/2008 6:59 AM (GMT -7)   
so glad you are doing well! good luck w/the pred taper! I hope to taper down next wed the 9th, I still think I need one more week on it, w/confer w/GI.
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
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 40mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 150mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 

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