Remicade approved

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PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 8/19/2008 2:49 PM (GMT -6)   
Well Insurance flew through to everyone's surprise and they are moving my first treatment up to tomorrow instead of waiting for Thursday. 
Kim
~ Mom of Nathaniel aka "Peanut" 19m (7/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - 1st Remicade 8/20 - Align 1x day Prenatal Vitamin
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferrlicet IV monthly
- Allergies - Zyrtec 10mg 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/19/2008 3:18 PM (GMT -6)   
Yippee! Bring a good book and maybe a snack. I always look at it as my down time, and even my nap time! ;) Good luck tomorrow!

Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/19/2008 4:32 PM (GMT -6)   
Great! I'll be hoping like heck that it's successful for you. Yes, be prepared to relax for a couple of hours.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
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.


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/19/2008 8:43 PM (GMT -6)   
Hope you're in remission very soon...
Mild to Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/19/2008 8:46 PM (GMT -6)   
Loneylane said...
Yippee! Bring a good book and maybe a snack. I always look at it as my down time, and even my nap time! ;) Good luck tomorrow!

How is the treatment going for you?

Mild to Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 8/21/2008 12:19 PM (GMT -6)   
The treatment went ok and was uneventful which lately for me is a major GOOD event in itself. The nurse was careful about picking her vein and only blew one so even that part was what I would call a success. So far no side effects so I'm happy about that, but also no changes but I completely understand these things take time. I was a little tired after so I was glad I took a driver with me as the center is an hour's drive away for me.

Here's to hoping all treatments go this smoothly and I respond positively to it! (o:
Kim
~ Mom of Nathaniel aka "Peanut" 19m (7/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - 1st Remicade 8/20 - Align 1x day Prenatal Vitamin
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferrlicet IV monthly
- Allergies - Zyrtec 10mg 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/21/2008 1:43 PM (GMT -6)   
Hi Kim,

I forget what type of Kidney Disease do you have? Is it FSGS? I am curious to know if that will help you at all?

My new GI thinks maybe Remicade would help w/my MCD (which could be undiagnosed FSGS). So, I am considering the Remicade a little earlier than I had planned on it.
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 10mg 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!
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 8/22/2008 1:57 PM (GMT -6)   
Yes I have FSGS. They are interested to see what the results of the Remicade on my Kidenys are too, I have to go for bi-weekly blood draws so both doctors can keep track. If the kidney doc says no more then the Remicade gets stopped and fast! I hope there's no adverse effects on the kidneys at all some improvement would be nice but I will get along just fine with no bad (o:

hmm Maybe if things do get a little better my family won't scoff so hard at me when I talk about having another child. My mother is so nasty to me when I even talk about it going on and on about how selfish I am and how inconciderate of her feelings I am. I swear she still thinks she's in control of my life! By 36 you'd figure she'd loosen the strangle hold a little LOL. Before anyone gets upset. . . .yes I know mom's ALWAYS worry and I can VERY easily accept that. . .its the rude and mean comments behind my back to all the friends and family that I don't appreciate. Nothing warrants treating family that way imho.
Kim
~ Mom of Nathaniel aka "Peanut" 19m (7/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - 1st Remicade 8/20 - Align 1x day Prenatal Vitamin
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferrlicet IV monthly
- Allergies - Zyrtec 10mg 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 8/22/2008 2:02 PM (GMT -6)   
I too hope things go well for you and that you can continue the Remicade if it's working for you. I'm sorry your mother is making you feel that way...but one question...why are you being inconsiderate of her feelings? Remember that it's your choice to make.

Carol

Remicade - will have my 24th infusion on October 2
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 8/22/2008 8:41 PM (GMT -6)   
You're on your way to feeling better...: )
Mild to Moderate Pancolitis
Dx'd 05/2007
3 Lialda per day
Generic Rowasa daily or every other night
Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


BeijingBelle
Regular Member


Date Joined Aug 2008
Total Posts : 20
   Posted 8/25/2008 10:04 PM (GMT -6)   
Hi Beth75,

My husband has had MCD for almost 30 years (he is 42) and while he has been in remission for several years, I am curious about the Remicade idea. What is the theory on why/how it affects MCD?

Thanks!
Belle

PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 8/26/2008 1:23 PM (GMT -6)   
Carol,

Mom says I'm not concidering how me having a troubled pregnancy will effect everyone else and how as my mother she will worry about me and she doesn't need that kind of stress in her life with her high BP. That's how I'm being inconciderate to her. . . at least that's what she tells me.

REMI Update -
I'm doing well and have noticed a decrease in urgency so it seems to be working. . .however nobody mentioned the gas noises. . .OMG my belly is talking up a storm .. . it's almost embarrasing at work . . I'm trying not to have any meetings in person right now until this settles down. If I'm on the phone I can just mute the phone so people can't hear the gurrgles. It's not painful just noisy. On the good side. . . .the noises are loud enough that they can catch the baby's attention in the middle of him throwing his fits because we aren't letting him get up and walk around on his cast. It's great . . . he'll be mid cry and my belly will gurggle and he'll stop and look at me as if to say "How are you making that noise mommy?"

I'm going to keep my fingers crossed that the improvements keep going forward and the noises settle down. (o;
Kim
~ Mom of Nathaniel aka "Peanut" 19m (7/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - 1st Remicade 8/20 - Align 1x day Prenatal Vitamin
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferrlicet IV monthly
- Allergies - Zyrtec 10mg 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 8/26/2008 7:27 PM (GMT -6)   
Kim,

glad things are going well for you!! When are you getting your next Kidney tests done? I am curious to see what the results are? Are you spilling protien? If so, how much?

I have decided to hold off on remi and try cellcept next only b/c I can't be on remi and cellcept at the same time and if I go off remi I cant go back on.

hope you continue to improve. Tell your Mom that her making you feel bad stresses out your UC and FSGS and that is worse than her issues (I AM EVIL!).

all my best!
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 7.5mg 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!
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 8/27/2008 7:19 AM (GMT -6)   
smilewinkgrin   :-) smilewinkgrin ROFL smilewinkgrin :-) smilewinkgrin
 
I love the way you think Beth!  I think my mother's jaw would hit the floor if I said that too her!!!!! 
 
At this point I have my next remicade on 9/10 just after I get back from a trip to VA for a week and I see the Kidney doc later that same day. As far as the proteins I haven't had a urinalysis since January so I'm not sure on that. He'll probably order one in September. My creatinine (sp?) elevated up to 2.4 in Feb-Mar but came back to 1.75 last check in July. We're hoping to see improvements there after a few remicade treatments. I just had blood work yesterday so we'll know if there was any immediate responses from last week's remicade.
 
Kim
~ Mom of Nathaniel aka "Peanut" 19m (7/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - 1st Remicade 8/20 - Align 1x day Prenatal Vitamin
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferrlicet IV monthly
- Allergies - Zyrtec 10mg 

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