I dont think I can do it!!

[tots]

I am currently on Remicade every 8 weeks. In total I have had four infusions. I am not in remission. My Crohn's is no longer limited to my small bowel.

I am still having some very WICKED symptoms. I cant take time off work. Part timers dont get sick or vacation time.

I spoke to my Drs office today- he is going to add Prednisone 40mg,30mg,20mg
each for 10 days and take my Remicade from 5 to 7.50. (wont I be popular with
my Ins company!)

I am the only one to gain weight with Remicade? Not alot but, bloated looking-(thanks hubby for the well timed email for an exercise class ! Next time wait until I ask for your help!).

I honestly have just stared at the bottle- then "hid" the bottle in the medicine cabinet- and I know its there- waiting- lurking and waiting to pounce! I judt dont know if I can take it again! It scares the crap (LOL- I guess literally!) to
gain weight! I feel bad about myself as it is. I just dont think I can do it!!

And yes- my brain knows why I need it and what will happen if I don't but- my heart ?? I just dont know!!

lauren

 

[Jennifer]

I've never taken Remicade so I'm no real help there. This is the first time I've seen it mentioned though (as a possible side effect and not, "oh I'm feeling better so now I'm able to eat more"). I know Prednisone is an evil beast but can be extremely helpful. Says in your signature that you were taken off Entocort back in June, is it not possible to take that instead? You can tell your husband that you'll get to that once you're better (if you even need to). Your health is so much more important and you don't need anyone even mentioning your weight/bloat/water retention or whatever.

 

[tots]

Entocourt is for the small bowel. My Crohns spread into the
large bowel! Ugh!


Lauren

 

[chrisnsteph1022]

I started Remi in January and have gained 60 pounds (and I was not underweight).

 

[Jennifer]

Entocourt is for the small bowel. My Crohns spread into the
large bowel! Ugh!


Lauren

I believe we've had this discussion before. If not with you than with someone else. Entocort does release in both the ileum and colon. Do you have any sources that say it wont work in the colon at all?

"The active ingredient in Budesonide, is released from granules in the ileum of the small intestine and the right (proximal) colon, where the inflammation of Crohn's disease occurs." http://www.medicinenet.com/budesonide/article.htm

"Entocort EC is indicated for the treatment of mild to moderate active Crohn's disease involving the ileum and/or the ascending colon." http://www.drugs.com/pro/entocort-ec.html

"Budesonide is an anti-inflammatory drug (corticosteroid hormone). It works by decreasing the body's natural defense response (immune response)... Do not crush or chew the capsules. Doing so can keep the drug from being released properly into the colon and may increase side effects." http://www.webmd.com/drugs/drug-22007-Entocort+EC+Oral.aspx?drugid=22007&drugname=Entocort+EC+Oral

If you want more I'll find more. I have Crohn's and Crohn's Colitis. I take Entocort, not Prednisone (unless I absolutely have to but only to avoid surgery and death ).

It's also used to help treat arthritis:

http://arthritis.about.com/od/budes..._EC_Dosage_Side_Effects_Drug_Interactions.htm

I know it helped reduce my arthritis pain while I was it.

Also Prednisone and Entocort can be taken together (I took both on their highest doses for my body weight before my resection). My thoughts are maybe adding Entocort might help you be able to take a lower dose of Prednisone. That's just a hopeful guess on my part though.

 

[hurla31]

I understand completely. I started Remicade over the summer. I feel i have gained weight as well. It also may be due to the fact i was on prednisone for 8 months, and just recently finished. I feel so horrible about myself, i know its a struggle everyday. Good luck!

 

[Lisa]

Since starting Remicade in 2005, I have put on umm...~gulp~...about 70 lbs!...Now, I was a skinny 120 when I started, and don't really look like I weigh what I do...and of course reaching 40+ hasn't helped.....

I do tend to go up/down about 5 lbs -and am going to be actively trying to drop some weight as my BP has risen in the past year too.....

 

[tots]

Crabby- The two GI docs I spoke with told me about the absorbtion of the Entocourt. Maybe in my case its because they found it on the left side? "Left sided colitis"? I need to
read up on that. Is it just Crohns "further along"? Or a new Dx of ulcerative colitis- and is that why the flare up had me bleeding for the first time. UC tends to have more bleeding than CD?? And yes it was prob me that you talked about it with!

Pasobuff- I just lost 25 lbs while gaining 10 back! NOt ony do I want to feel better- I want to look better and feel good about myself!! Ugh! I gotta take control of this soon!!


Lauren

 

[Jennifer]

I need to do more research on the whole left side vs right side vs everywhere business myself. Looking at the forum wiki on UC it mentions possible distinct differences between UC and Crohn's or Crohn's Colitis such as Crohn's skipping areas where UC tends to affect an entire patch and inflammation in Crohn's penetrates deeper through the intestinal wall than UC. Also check out this table here: http://www.crohnsforum.com/wiki/Crohns-Disease-vs-Ulcerative-Colitis Hopefully that might help a little.

Maybe David or even Judith might have more insight in the whole "____" only affects the right/left side of the colon," issue. I know I've heard it mentioned from GI docs ever since I was a kid but apparently never retained the information. And since I'm sick its really hard for me to focus and read since my comprehension level is at like a 2 out of 10 right now.

As far as more bleeding with UC, that would be the first I've heard it. I know I had a lot of bleeding and many others had to have transfusions. I think it mainly depends on the amount of damage going on.

 

[Aura]

Hi Lauren, so sorry to hear that its now in your large bowel as well. At times it seems hard to catch a break, eh? I know prednisone is a bugger of a thing = I am still having a hard time coming off it. But I do know that when I was really sick it was the only thing that kept me out of hospital. The methotexate stopped working, the Aza wasn't working and I had to get Humira - with permission from our Pharmac here to take it. The 40 mg prednisone made a significant difference until the humira started to work. It's a bugger - but sometimes you need it to get the respite so that the other meds can do there job as well.

I so wish you well, and as for size, be any size you want to be - just be well first and foremost. If my hubs suggested an exercise class for me at the moment I think he would find his head in the toilet. :biggrin: I create a sweat doing the washing. Everything is relative. The most important thing at the moment is for you to get better and start putting the CD in remission.

Take care

Kirsty

 

[tots]

Crabby- At about 2am I gave up on the reading and I can no
Longer remember what I read! Will try again tomorrow after work
No use trying to do it tonight as I close the store!

Kristy- thank you for the words of encouragement!! I am sure
remission is right around the corner! I just have to find the
right corner

 

[ChristineinDenver]

I was on Remicade for 5 years. It never caused weight gain, but the Prednisone did and very very quickly. My doc would add the Prednisone when I started to have a flare. It was ridiculous. I was just scrolling through photos and it is obvious when I was on the Prednisone. Mind you I would have taken anything if it worked, but the Prednisone didnt. I was up to 65 mg, day and still bleeding.Prednisone is cheap, your insurance company wont complain. If the Remicade can get you in remission that would be awesome and you can be off the Pred. I was in remission for five years and healed. My doc suggested we try going off of it. I did and went into a flare within six months. Stay on what works!!!

 

[tots]

Christineindenver-
I have been down that road- no problems no treatment

Won't do that again! Without realizing it and wanting to pretend
I was ok- it progressed into the lrg bowel.

How did you get back into remission ??


Lauren

 

[ChristineinDenver]

Hi Tots. As Shakespeare would say...there's the rub. I have UC and my colon stopped working. I had it removed, had a "jpouch" built out of my small intestine (with a temporary ileostomy), and had the take down in June 2012. I havent recovered. I dont know anyone who has had this surgery and still has the diarrhea, Im going 25+ times a day, 5-7 at night. My doc started me on Cholestyramine yesterday and I only went twice last night. Feels like a miracle but I know nothing about this drug. Ive had an endoscopy, and all is healed, but there is something else going on. Long story short, my UC is supposedly "cured", but I wouldnt call this a remission.