help with remicade issues

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uclife
Regular Member


Date Joined Aug 2007
Total Posts : 50
   Posted 5/17/2009 9:19 AM (GMT -6)   
Hi everyone
 
I had my second remicade infusion last tuesday.  I am feeling awful!  I seem to have more gas than before I started this whole thing.  I am so irritated..I noticed blood with bm today too!  I havent had blood or this terrible gas in a long long time thanks to Prednisone but was told I would be better once I started Remicade and honestly dont know what to think.  Is it possible that all of these issues are a result of Remicade.    I have been having what seems more gas and trouble eating foods that were not bothering me prior to my frist treatment. I was feeling the best I had in years prior to this remicade but knew I had to try it to get off the prednisone.   I thought maybe it was a coincidence and was reassured from the GI that is was me just trying to have a flare up.  With this said I went ahead with the second infusion and here we go again...gas and pain and now blood. 
 
Please does anyone have the same issues or had them?  Is this normal?  Part of the healing process? 
 
Thanks for listening to me whine, I am just sooooo irritated!!!!
 
 
Amy
32 yr old
Pancolitis since oct 06  told I have crohns-colitis over lap 10/08
waiting on that remission
asacol 12 daily, canasa suppositories, protonix, iron supplement, ativan, Prednisone started at 30mg now on 10mg daily. 
Started remicade 4/28/09....no notice of relief yet
Trying to stay positive!!
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 5/17/2009 9:29 AM (GMT -6)   
Heck Amy, this is a great place to give a whine! We totally understand. I'm glad that you are communicating your problems with your doc. It's most important. Now, if I can remember correctly, it took me awhile before things started to totally even out. Even though I totally felt better, I still had the gas and some looser stools. Even now, just like the doc says, I can feel when my body should be flaring. I get bad gas and loose stools and a few more bms. Also get that nasty gas smell -- the one like rotten eggs! However, I haven't been getting it so much recently. I'm not sure what to attribute this to, but the only thing I have changed is I started taking Vitamin D and upped my probiotic intake a bit. Please keep in touch with your doc. It may take a few more infusions before things get in order.
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


uclife
Regular Member


Date Joined Aug 2007
Total Posts : 50
   Posted 5/17/2009 4:45 PM (GMT -6)   
Carol...thanks for your input. I see you have been having Remicade for a while now.  I am going to be patient and see what happens but will continue to keep my doc informed too. 
 
I wanted to ask you what kind of probiotic you use.  I tried one and it gave me major cramping.  I read on the box and I believe it had casein (milk protein) in it and that is a no no for me since I am intolerant to milk so I wonder if that is why I had trouble.  I have not tried any others since.  I also see you are taking biotin, what is that?
 
I worry when trying new things in fear of them upsetting my UC worse.  Thanks for your help, I really appreciate it!
Amy
32 yr old
Pancolitis since oct 06  told I have crohns-colitis over lap 10/08
waiting on that remission
asacol 12 daily, canasa suppositories, protonix, iron supplement, ativan, Prednisone started at 30mg now on 10mg daily. 
Started remicade 4/28/09....no notice of relief yet
Trying to stay positive!!
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 5/17/2009 9:58 PM (GMT -6)   
Amy; I use a Probiotic from Trader Joes, and also Yakult probiotic drink which has no dairy in it. There is another that I tried which is called GoodBelly. Both can be found at regular supermarkets. Biotin helps grow the hair and nails. Since I was having trouble with that after being on the Pred, someone from this forum suggested it (I believe it was Red!) It's been heaven sent; I've gone from no hair to thick healthy hair and nails. The B-12 just gives me a bit more energy. This is also a Trader Joe's vitamin, but you can find Probiotics and Vitamin B-12/Biotin pretty much anywhere. Good that you are working with your doc, hope you are feeling better soon. Take care!
Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


uclife
Regular Member


Date Joined Aug 2007
Total Posts : 50
   Posted 5/18/2009 6:51 AM (GMT -6)   

Carol..

Thanks for all the info...I will go to my local grocery store and see if they have the probiotic drink and capsules without the milk protien.  I am also really interested in the Biotin...I have noticed more hair in the drain in the past few months since being on the Prednisone. It is beginning to worry me so I am excited to try Biotin!  Its funny how pred is supposed to work for inflammation but give you so many crazy side effects.  I feel like I am on a constant emotional roller coaster from the pred.  I am trying to take the good with the bad...I have gained so much weight too...the heaviest I have ever been...but again trying to stay positive!  lol 

Ok, I am going to go to the store and see what I can find!  Thanks for the help!

take care

 


Amy
32 yr old
Pancolitis since oct 06  told I have crohns-colitis over lap 10/08
waiting on that remission
asacol 12 daily, canasa suppositories, protonix, iron supplement, ativan, Prednisone started at 30mg now on 10mg daily. 
Started remicade 4/28/09....no notice of relief yet
Trying to stay positive!!
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 5/18/2009 7:52 AM (GMT -6)   
It can take up to five infusions for Remicade to work, so don't worry yet. I didn't get any better with my first 3 infusions so I scheduled for surgery. But then my c-scope showed that everything was healed but the last few centimeters, so the key was to find the right combo of rectal meds.

There are sooooo many probiotics! I'm using VSL #3 DS, which is by prescription and has research to prove that it helps with IBS and UC. It's the only probiotic that has actually helped (albeit slightly).
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (7 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric
 


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6448
   Posted 5/18/2009 7:58 AM (GMT -6)   
I was going to mention rectal meds too. I know a couple of people who started Remi, and needed the rectal meds to get them over the hump and into Remi remission. Sorry; I jutst thought about that this morning!

Carol

Remicade - will have my 29th infusion on July 8
Vitamin B-12/Biotin, Probiotics, Vitamin D-3 (2000 IU)
 
Co-Moderator for the UC Forum
 
 


uclife
Regular Member


Date Joined Aug 2007
Total Posts : 50
   Posted 5/18/2009 8:21 AM (GMT -6)   

Thanks so much for the input about rectal meds.  I have gone that route before about a year ago due to excessive bleeding.  They seemed to work pretty good but only temporarily.  I used canasa suppositories and cortenemas but might ask about them again if things dont calm down! 

Getting these responses are so helpful, thanks everyone!


Amy
32 yr old
Pancolitis since oct 06  told I have crohns-colitis over lap 10/08
waiting on that remission
asacol 12 daily, canasa suppositories, protonix, iron supplement, ativan, Prednisone started at 30mg now on 10mg daily. 
Started remicade 4/28/09....no notice of relief yet
Trying to stay positive!!
 

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