Weight gain

[wilson]

hi I have had crohns for over 10 years now and have been pretty luck had a first flare up last summer weight loss etc and have been on infliximab since last august I have over the last few months seen my weight go from 9 stone to over 11!! just learnt it could be a side effect of infliximab?? can anyone help with this:frown:

 

[n00b]

Yep I am the same
Since being on Humira I have gone from 12stone to 14.5stone:sign0085:

 

[wilson]

thanks for getting back I am due my next iv next week but not sure whether to go or not does anyone have any idea if coming off the infliximab straight away can cause problems???:sign0085:

 

[Lady Organic]

ALWAYS consult your GI before taking such important decision. let your GI team know of this side effect and concern. I'd fallow treatment plan as ordered by GI unless told otherwise. Infliximab is serious drug and there is the possibility for it to losing its efficacy when started again after being stopped.
I once stopped a medication without telling my GI and I regret this decision so badly. Im still paying for it 5 years later. A obvious flare resulted in me stopping my medication, but on top of it, towards the end of that flare, I got a first ever onset of crohn's arthritis which is still chronic as of today :yfrown:

 

[Captain Fox]

ALWAYS consult your GI before taking such important decision. let your GI team know of this side effect and concern. I'd fallow treatment plan as ordered by GI unless told otherwise. Infliximab is serious drug and there is the possibility for it to losing its efficacy when started again after being stopped.
I once stopped a medication without telling my GI and I regret this decision so badly. Im still paying for it 5 years later. A obvious flare resulted in me stopping my medication, but on top of it, towards the end of that flare, I got a first ever onset of crohn's arthritis which is still chronic as of today :yfrown:

I agree with the previous statement. Don't jump off it just yet. Treatment could really make a huge difference.
Try and eat a balanced diet (if you can. I know it's hard to find good food with Crohn's) and do some sport (not too much though, you don't want to loose too much weight again). Maybe swimming or walking would be good to start with? I'm trying to find a balance too :eek2:
I hope this helped in some way. :rosette1:

 

[EvieBaby]

I've found it impossible to lose any weight for years. I've done slimming world, weight watchers and calorie counting and nothing works. I lost a few pounds earlier in the year but they came back on so quickly.

I've always been a larger person naturally, and I'm tall for a girl, but this weight issue really gets me down. I try to exercise as much as possible but the constant exhaustion and hip pain makes it very difficult to keep going. Its very frustrating!

 

[wilson]

I've found it impossible to lose any weight for years. I've done slimming world, weight watchers and calorie counting and nothing works. I lost a few pounds earlier in the year but they came back on so quickly.

I've always been a larger person naturally, and I'm tall for a girl, but this weight issue really gets me down. I try to exercise as much as possible but the constant exhaustion and hip pain makes it very difficult to keep going. Its very frustrating!

my problem is I have had a heart attack and a stroke and have to watch my weight all the time im trying to get in to see m y consultant I feel annoyed he didn't explain about the weight gain:shifty:

 

[Lady Organic]

I understand your concern... the weight gain probably doesnt occur that often as a side effect. Unfortunately you fell on this one. You gained the weight without changing your nutritional habits at all? or you feel more hungry and eat more under infliximab?
how about meeting with a IBD nutrionnist to try to sort out this complex situation? the hospital where you go most likely have one.

I like the doggy BTW

 

[wilson]

I understand your concern... the weight gain probably doesnt occur that often as a side effect. Unfortunately you fell on this one. You gained the weight without changing your nutritional habits at all? or you feel more hungry and eat more under infliximab?
how about meeting with a IBD nutrionnist to try to sort out this complex situation? the hospital where you go most likely have one.

I like the doggy BTW

no my food is the same Im not a big eater anyway which is why infliximab is the only thing I can think of and there isn't a nutrionnist at my local hospital I think they fired the last one might be worth seeing how much a private one costs
I am going up to my hospital in the morning to try and see someone I cant get an appointment right now and am due my infusion on wed and I really want to talk to someone before then

 

[Caitlin84]

I suggest the HAES book by Linda Bacon and Body of Truth by Harriet Brown to anyone struggling with weight issues (which is everyone, right?).

 

[Honey]

Hi there and welcome, It may be that you are feeling better on the Remicade infusions and enjoying your food more, so eating a little more. Are you , by chance ,on Steroids too? You pile on the weight very easily even with eating small meals! I am on Prednosolone and unfortunately have gone up two sizes!!! I hate it ! However, as someone else said you cannot stop treatment because of weight gain. It is strong drugs we are on. Good luck, let me know how you are.

 

[wilson]

just back from the hospital and they said the infliximab does not have any side effects which would cause my weight to go up/or the face swelling and the steroids im on are not enough to put weight on!! so seems its a mystery I have to have another camera to see how my bowl is as I have seen blood for the last few weeks not much though and im coming off infliximab for the time been don't no what to make of it all very confused now

 

[Honey]

Hi there, you definitely do put on weight with steroids,even a small dose. The moon face too ! I hope all goes well for you. I too, am having a lot of investigation just now starting with a scan next week. It is unnerving but keep the spirits up. Good luck .:rosette1::getwell::rosette1:

 

[wilson]

stay strong xx

 

[Honey]

Thanks

 

[Lady Organic]

the weight gain and moon face are prolly most talked about and hated side effects of prednisone... which dose are you on?
so they have taken you off of remicade? after a 1 month trial? or a year trial? you mention august but not which year...

 

[wilson]

hi I started a year ago the steroids I no it sounds bad but I didn't realise I was on any!! they flush my cannular out before the infusion but it was actually a shringe full of steroids they have been putting in my hand cant say the dose so a full syringe isn't going to make much difference to my swelling or weight gain so they said but the strange thing is I had been fine up to april this year when I noticed the swelling and weight getting bad before that I was fine? so do you think it is the steroid causing it and does anyone no if the weight will even out now ive stopped taking it all:sign0085:

 

[Honey]

Hi there, I was told that my weight will only go down when I am off steroids. There is your answer!

 

[wilson]

think I need to change my consultant!! they said it would not make a difference thank heaven I found this site with people who are in the same boat and seem to no a lot more thank you so much:biggrin:

 

[wilson]

things seem to be getting worse the bleeding is def more than I have had before feel ok in my self having the camera on the 2nd of October fingers crossed