Remicade Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Good luck Beach Bum! Hopefully you get to have your infusion today!

Whenever I have to go on antibiotics, they wont let me have an infusion until 10 days after I finish them.. which is a pain!!! As I get UTIs quite often (a lovely gift from my fistula :p lol)

Good luck with your infusion today, and fingers crossed all goes well! :)
 
Ten days ! That's a pain, luckily they put me on a three day course and were happy with my dip stick test yesterday.
I had a funny reaction to the normal antibiotics they give for bladders which is a week long course ( in fact I think they gave me my first ever flare four years ago ).

Thanks guys your good wishes worked. I am all done and can forget about it till after Christmas now :)
 
Isn't it GREAT when you can forget about meds etc for a short while and pretend things are normal? Recently went on a 2 week cruise and shoved all pill bottles into a cupboard in my room and lived a "normal life", ignored the mini flares, took no meds except a bit of pain and had fun. Enjoy the break Beach bum.
 
Hello everyone!

Its been awhile since I've posted because I've been super busy.

I just had my 5th infusion on Dec 3rd. I had some insurance/doctor's office/infusion center issues that might not have made my 5th infusion possible. But everything got settled the Friday before my infusion so I was able to have it done.

I get my infusions every 6 weeks, and I haven't really noticed any CD symptoms until the 1-2 weeks before my 5th infusion. Granted, this was during Thanksgiving and it could have just been all the crap I ate on Thanksgiving ? But I felt sick; nausea almost every day, bad stomach cramps and even had one loose bowel movement. I told the nurse that usually does my infusion and she said it could be wearing off. Oh, great! What does this mean?

Also, I'm still pretty anemic, so much so that my hair is falling out like crazy. Its all over the floor in the shower after I take one, and all over my pillow, and a good amount comes out when I brush it.

Also, I've been getting some terrible headaches. I've never had a migraine before so I can't really say if I'm having them now, but this last one was so intense, I couldn't sleep, watch TV or move my head until it was gone.

Anyone else experiencing this and have any advice for me?
 
I've had my 3rd infuison and I've had more BM this last infusion than the other two ! I thought I had eat something that caused it . Is there anybody else on remicade with this problem ?
 
Looks like we wont be Remi buddies on the 13th anymore spinnychick... got a call today that Im being put on antibiotics for a UTI, and the infusion will be rescheduled :(
BOOO.
 
It is interesting how different areas react differently...I think I've gooten my infusion while on antibiotics...or at least within a close time to having stopped them...a couple years ago now I had lost my voice, was broken out all over in a nasty rash (after 2 strep infections a month apart)...and STILL was able to get my infusion.....although...it may have been partly because I didn't tell the nurses I probably shouldn't get it....I was going to the apheresis clinic instead of infusion clinic (was closed due to staffing shortage)....they were pretty CLUELESS about remicade down there!
 
Such a pain! I was looking forward to getting my last loading dose!!
Ive had 2 infusions so far, and haven't really noticed much of a change. I had nausea and headaches after both infusions, but no change in any symptoms. I've never had much issue with BMs to begin with, so not much change there.
I just finished my run of prednisone (finally!!) and now am having the return of pain which isn't fun :(... to be honest, I haven't really seen any changes at all (other then the headaches and nausea) since starting on remicade...

I have started to have constant bad acide reflux (for the last week or two) which isn't normal for me. It gets bad to the point of being sick... but Im not really sure where that comes from!

I wish I coudl still get my remi with the antibiotics and UTI! lol... but no, they said that they will not give me the remicade until 10 days after i FINISH my antibiotics, so long as there is no further sign of infection.. that means almost 3 more weeks til my next remicade infusion :(... not a happy camper!
 
For those that get nausea from Remi, does it occur right after the infusion, or right before your next one?

I just suffered nausea for four days, I got my first infusion Nov.28th and get my second one tomorrow.
 
I think it may be the Imuran that caused it. It did in the beginning and I dropped dosage and went a week in between going up, but I was on three pills (150) since Sunday night and the nausea hit Thursday, so I am not sure.

Also having trouble swallowing, where it feels like bits of food are just sitting at the base of my throat, so not sure if that would cause nausea.
 
Happy day! Just got a call from my GI, she is letting me go ahead with my infusion tomorrow despite the infection and antibiotics... Because it's my 3rd loading dose, they don't want me to miss it. woot!

JoFowler - I am on 150mg of imuran and it does give me nausea as well. Ive been on it at 150mg for just under a month now. I dont have any issues with swallowing food though.. so not sure what that could be :S
 
Is imuran the one that is similar to methotrexate? Going for 2nd infusion tomorrow, hope not to feel as barfy afterwards as last time.
 
Spinnychick, 6MP is similar to Imuran they are both in the thioprine family of drugs and are both immunosuppresants. Methotrexate is an immunosuppressant too but not in the thioprine family.

C had his infusion Monday and all went well!!Yay!
 
Clash said:
Spinnychick, 6MP is similar to Imuran they are both in the thioprine family of drugs and are both immunosuppresants. Methotrexate is an immunosuppressant too but not in the thioprine family.

C had his infusion Monday and all went well!!Yay!
Click to expand...

My doc said methotrexate didn't work for me. And my doc said Imuran isn't good for me due to my genes, as I'm not a match so I'm doing remicade without anything else.
 
I was originally set to do Remicade alone without any other drugs, but my GI added in Imuran as she said that together they can be more effective... but she also said some dont recommend using them together due to possible negative reactions. So it sounds like it should be fine to be on remicade on it's own!
 
I agree with thisisme, plenty of patients that get great response from Remicade alone and remain on monotherapy for years!! I hope that is the case for you, Spinnychick!!
 
I have my 9th infusion tomorrow and I am not sure if I want to continue. I have been having a lot of problems the last two months, my docs want me to continue with the meds but I have been flaring and feeling really sick again. I am on Pentasta (remission drug) Imuran (immunosuppressant) and Remicade. I don't know why it seems to have stopped working. Does anyone else have these issues after a year and 3 months of Remicade. I am going to it tomorrow morning but it may be my last. UGH! Good luck with all of your infusions tomorrow!
 
Looks like we're both getting pumped up tomorrow chronette. Good to get it done before the holidays. Hope your health improves.
 
crohnette said:
I have my 9th infusion tomorrow and I am not sure if I want to continue. I have been having a lot of problems the last two months, my docs want me to continue with the meds but I have been flaring and feeling really sick again. I am on Pentasta (remission drug) Imuran (immunosuppressant) and Remicade. I don't know why it seems to have stopped working. Does anyone else have these issues after a year and 3 months of Remicade. I am going to it tomorrow morning but it may be my last. UGH! Good luck with all of your infusions tomorrow!
Click to expand...

I see you already get it every 6 weeks. What dose do you get. I was on 5mg/kg for 5 years every 8 weeks. Then they increased to 10mg/kg every 6 weeks. Just wondering if you are on 5mg maybe they could increase you 10mg.
 
Dukeis said:
I see you already get it every 6 weeks. What dose do you get. I was on 5mg/kg for 5 years every 8 weeks. Then they increased to 10mg/kg every 6 weeks. Just wondering if you are on 5mg maybe they could increase you 10mg.
Click to expand...

To be honest I can't remember what the dose is. I have had a really hard time with my short term memory this past year, I will ask tomorrow if I remember. So sick today, cramping and urgency are all back like crazy, I wish I could go back to feeling pretty good again.
 
Sitting here getting my infusion! 1/2 hour down, two hours to go! Hoping to feel better after this one, not like last time where I felt worse! How is everyone els doing today?
 
crohnette said:
Sitting here getting my infusion! 1/2 hour down, two hours to go! Hoping to feel better after this one, not like last time where I felt worse! How is everyone els doing today?
Click to expand...

I'm going in 2 hours. Is your first half hour benadryl and a steroid drip? And then 2 hours of remi. This will be my second infusion and I pray to the remi Gods that I don't feel the nausea afterwards like last time. I would take pain over nausea any day!! Are people there chatty?
 
spinnychick said:
I'm going in 2 hours. Is your first half hour benadryl and a steroid drip? And then 2 hours of remi. This will be my second infusion and I pray to the remi Gods that I don't feel the nausea afterwards like last time. I would take pain over nausea any day!! Are people there chatty?
Click to expand...

Nope, just remicade and saline. And not too chatty today. Sometimes but today it's pretty quiet. Thank God my husband won this IPad or I would be super bored. Yeah, I would take pain over all of the cramping and diarrhea and nausea I have been having too! Been flared all over for two months now again. Hope your infusion goes good for you too!
 
I've been "flaring" since diagnosed in May, nothing has worked yet, so hoping remi is my magic. Not impressed after the first infusion, increased bm's, increased pain, but hopefully another dose today will fix all that. I bring my tablet too, sugar free candies, and a book to read. We have a tv and movies too but nobody turned it on last time and I was too chicken lol.
 
spinnychick said:
I've been "flaring" since diagnosed in May, nothing has worked yet, so hoping remi is my magic. Not impressed after the first infusion, increased bm's, increased pain, but hopefully another dose today will fix all that. I bring my tablet too, sugar free candies, and a book to read. We have a tv and movies too but nobody turned it on last time and I was too chicken lol.
Click to expand...

We do too but I have yet to see the TV turned on during my infusion. I was in the same boat as you were a year and a half ago. But I finally got a taste of the good life after starting remi and now the flaring is killing me. I don't know which is the lesser of the two evils, staying sick or feeling better and then going back to being sick when you know what it is like to feel good again. I was pretty sick for about 5 years trying to get through on my own because I had some really bad medical doc experiences, being treated horribly and with no respect, crying after every appointment because they were so rude and abrasive, I had given up on doctors.
 
crohnette said:
We do too but I have yet to see the TV turned on during my infusion. I was in the same boat as you were a year and a half ago. But I finally got a taste of the good life after starting remi and now the flaring is killing me. I don't know which is the lesser of the two evils, staying sick or feeling better and then going back to being sick when you know what it is like to feel good again. I was pretty sick for about 5 years trying to get through on my own because I had some really bad medical doc experiences, being treated horribly and with no respect, crying after every appointment because they were so rude and abrasive, I had given up on doctors.
Click to expand...

Glad to hear that it's been successful for you, and that you're on a much better path now. Part of me hopes to just get bumped up for surgery to get whatever cut out and then live life normally. It's hard, I have a few friends who "have friends" with crohn's, and there are so many people living normally, no meds, nothing, and they go years without a flare. Maybe one day I'll be like that too. :dance:
 
spinnychick said:
Glad to hear that it's been successful for you, and that you're on a much better path now. Part of me hopes to just get bumped up for surgery to get whatever cut out and then live life normally. It's hard, I have a few friends who "have friends" with crohn's, and there are so many people living normally, no meds, nothing, and they go years without a flare. Maybe one day I'll be like that too. :dance:
Click to expand...

I hope to get there at some point too. I hope this works for you! My stomach is so rumbly today I am slightly self conscious in here because it sounds like a large bear has entered the room! Lol! Trying to soften the noise with my hoodie. Hahaha!
 
Dee, if they cut it out, the CD will grow back in the same area it was cut out from. You would need to eliminate your whole digestive tract for that! Infact, I just woke up with an ulcer in my mouth :( A HUGE ONE TOO!!!!

Katie, has your dr done the trough level yet? could be helpful. However, some people just...grow immune to it I guess. And you should find out the dosage. 5mg/kl is a normal starting dose, and can be tweaked from there. I havent heard from you in a while! Did you guys get snow down there too?? We were slammed!!!
 
j.bug said:
Dee, if they cut it out, the CD will grow back in the same area it was cut out from. You would need to eliminate your whole digestive tract for that! Infact, I just woke up with an ulcer in my mouth :( A HUGE ONE TOO!!!!

Katie, has your dr done the trough level yet? could be helpful. However, some people just...grow immune to it I guess. And you should find out the dosage. 5mg/kl is a normal starting dose, and can be tweaked from there. I havent heard from you in a while! Did you guys get snow down there too?? We were slammed!!!
Click to expand...

Snow...yes we were pummeled! Almost a foot and they are saying this weekend it is going to happen again. I will ask what I am on. I have been pretty sick this last week and a half. The colonoscopy was horrible and painful and they couldn't get all the way through for what reason I don't know but I do know that I am never having one without sedation again. I am still feeling bruised inside. I can feel stuff moving through me and it is like someone is constantly pushing on a bruise in there. That night I ended up in the ER because I had a migraine so terrible all day that I was throwing up all day, at least once or twice an hour for about 16 hours that day! I am still feeling and seeing the effects from that, blood vessels burst all over my face from the pressure. I have never asked god to take me until that day. Awful! Ugh!

Anyway, how are you doing?
 
Oh I know the feeling!! Its terrible isnt it???! I wont do scopes without sedation either...I hear, and FEEL everything. Its horrible. Ive been ok. Scrambling for the the holidays, but with all this dang snow!!! Not to mention the highs at 5 degrees!! Brrr! I just cant get out of the house! lol! I have gifts to send over seas, so i need to now...but...maybe tomorrow!!! lol
 
All hooked up and ready to go :)... third and last loading dose today, and fingers crossed I start to feel some improvement!
Just getting the steroids.. then the benadryl... then the remicade!
Clinic is super busy today too... and short staffed. ugh.
 
I've heard mixed results from people who've had surgery. Guess I'm frustrated with the number of drugs I've been on in a six month period and nothing has worked.

Ulcers in your mouth? Aw hun, that sucks. Sorry for what you go through.
 
thisisme said:
All hooked up and ready to go :)... third and last loading dose today, and fingers crossed I start to feel some improvement!
Just getting the steroids.. then the benadryl... then the remicade!
Clinic is super busy today too... and short staffed. ugh.
Click to expand...

All hooked up here for second loading dose. Brrrr chilly. Hoping people here chat today and I canmake an infusion friend :)

Hope this treatments brings you improvement.
 
j.bug said:
Oh I know the feeling!! Its terrible isnt it???! I wont do scopes without sedation either...I hear, and FEEL everything. Its horrible. Ive been ok. Scrambling for the the holidays, but with all this dang snow!!! Not to mention the highs at 5 degrees!! Brrr! I just cant get out of the house! lol! I have gifts to send over seas, so i need to now...but...maybe tomorrow!!! lol
Click to expand...

I know, the cold is hard to deal with, at least the roads are better now. I have a lot of Christmas stuff to do yet, been to sick to do it. Maybe tomorrow is right! Seems like the story of my life lately! LOL!! I do not want any more snow this weekend but it sounds like we are gonna get hit pretty hard again.
 
spinnychick, do you know what those people did to get to that point of being well with no meds, etc? I'd love to hear. thanks
 
I think they just learned what to eat, what vitamins to take etc. I find there are more with CD in remission than flares for sure. A friends daughter had surgery 22 years ago and is fine now, same as my cousins hubby. That being said, every individual is different and each case is different. Some need pred, some surgery, some remicade. One simple solution would be nice right across the boards but because we all have it in diffetent severity, different locations, etc, our treatments and healing will all differ.
 
Had my 3rd loading dose his afternoon. And now appear to be experiencing something new... it started as numbness and tingling in both wrist... it then spread into my hands... over the past couple hours its slowly spread up my arms and to a lesser degree my feet ankles and calves.... any ideas?!
 
thisisme, you may want to contact your dr. as this is one of the listed side effects to contact physician about. Click here for link

I also noticed that other members have discussed this if you type remicade tingling in the search bar you will pull up some threads.

Edit: You may want to also search Remicade on rxlist.com for more info.
 
thisisme said:
Had my 3rd loading dose his afternoon. And now appear to be experiencing something new... it started as numbness and tingling in both wrist... it then spread into my hands... over the past couple hours its slowly spread up my arms and to a lesser degree my feet ankles and calves.... any ideas?!
Click to expand...

I had this same issue in the beginning, my doc sent me to a neurologist for testing of nerve damage and MS. I had to have and MRI of my neck and head and then I had to have nerve testing done. I ended up with no problems afterward but still experience it once in awhile. So I would definitely contact your doctor.
 
Thanks for the advice! It's much appreciated!
It was a long night of no sleep thanks to the tingles... but they seem to have gone away as of this morning... so I feel a bit better now!

I was googling last night, and read the same things you are saying Chronette... everyone ended up getting MRIs and such to test for nerve damage, MS, and what not. I do have an appt with my GI next monday, so I plan to bring it up with her then... unless of course the tingles come back between now and then, in that case I will call!

Thanks!!!
 
2nd infustion done!! But wow, as soon as they started it and for approx 12 hours, I was sooooo gassy. My stomach sounded like there was a dragon living in it, non stop gurgling, drove me nuts. Seems to have dissipated now. This ever happen to anyone?
 
spinnychick said:
2nd infustion done!! But wow, as soon as they started it and for approx 12 hours, I was sooooo gassy. My stomach sounded like there was a dragon living in it, non stop gurgling, drove me nuts. Seems to have dissipated now. This ever happen to anyone?
Click to expand...

I don't know if it is from the Remicade but mine was doing the exact same thing for the last 2 days now. I described it as a lion eating a grizzly bear but a dragon is a good analogy too! hahaha!:ylol2:
 
thisisme said:
Thanks for the advice! It's much appreciated!
It was a long night of no sleep thanks to the tingles... but they seem to have gone away as of this morning... so I feel a bit better now!

I was googling last night, and read the same things you are saying Chronette... everyone ended up getting MRIs and such to test for nerve damage, MS, and what not. I do have an appt with my GI next monday, so I plan to bring it up with her then... unless of course the tingles come back between now and then, in that case I will call!

Thanks!!!
Click to expand...

I had that happen to me the first time I took Remicade. They made me stop treatment because of it, but that was back in the days when they first started using Remicade. They restarted again about a year later and they always would premedicate me and I never had that problem again. I went on to using Remicade 7 streight years after that. Good Luck!
 
spinnychick said:
2nd infustion done!! But wow, as soon as they started it and for approx 12 hours, I was sooooo gassy. My stomach sounded like there was a dragon living in it, non stop gurgling, drove me nuts. Seems to have dissipated now. This ever happen to anyone?
Click to expand...

Did they premedicate you with IV methylprednisolone (steroids)? Every time I got Remicade I would get IV methylprednisolone and it caused a lot of smelly exhaust. I realized it was the steroids one time I was in the hospital because of a flare. Every time I got the IV steroids it gassed me up.
 
Dukeis said:
Did they premedicate you with IV methylprednisolone (steroids)? Every time I got Remicade I would get IV methylprednisolone and it caused a lot of smelly exhaust. I realized it was the steroids one time I was in the hospital because of a flare. Every time I got the IV steroids it gassed me up.
Click to expand...

Yes, I am on some kind of steroid pre load, so maybe that's it. I'll have to look into what exactly it is and do some research. Wasn't painful, just irritating and embarassing. Thanks for your reply.
 
I know the steroid they use for the pre-meds at our clinic is "sulfa cortate" or something like that? Im guessing its hydrocortisone, as that was what my prescription was for (and benadryl) in regards to pre-meds
I dont get gassy from it, but I always seem to have some sort of bubbly grumbly party going on in my stomach!
 
Aren't stomach parties the best? As long as they don't hurt or cause gas pain they are quite entertaining. The painful ones are the pits though, nothing worse than horrible gas cramps and pain. Well, nausea is worse lol. Hate the nausea. I took so many nausea pills yesterday. Think I now have a kidney or bladder infection. May have actually had it before my infusion yesterday. Am I allowed antibiotics now that the infusion is done?
 
Oh I do love stomach parties! Everyone around me at work has gotten used to my "talking" stomach, lol. But you are right... the ones that hurt, are no party at all! I do agree that nausea is the worst! for some reason, it doesn't usually hit me until a day or two after the infusion... so right now I feel like im waiting out the storm!
I currently havea bladder infection, and they ended up letting me stay on my infusion for yesterday! So I am on antibiotics before, during and after my infusion. Im pretty sure so long as the doc ok's it, you are good to go for antibiotics.. just make sure who ever you go to knows you had the remi infusion!

There were actually 3 of us at the clinic yesterday on antibiotics for UTIs... we all had to get authorizations faxed from our doc to be able to go through with the infusion. The nurse of course found this quite funny, but I don't think I enjoy being called one of the "bladder club" lol
 
spinny - you shouldn't have a problem going on antibiotics right after an infusion....hope you clear that up soon! Cranberry juice is a good drink - real lemonade too to help clear things out....
 
thisisme said:
Oh I do love stomach parties! Everyone around me at work has gotten used to my "talking" stomach, lol. But you are right... the ones that hurt, are no party at all! I do agree that nausea is the worst! for some reason, it doesn't usually hit me until a day or two after the infusion... so right now I feel like im waiting out the storm!
I currently havea bladder infection, and they ended up letting me stay on my infusion for yesterday! So I am on antibiotics before, during and after my infusion. Im pretty sure so long as the doc ok's it, you are good to go for antibiotics.. just make sure who ever you go to knows you had the remi infusion!

There were actually 3 of us at the clinic yesterday on antibiotics for UTIs... we all had to get authorizations faxed from our doc to be able to go through with the infusion. The nurse of course found this quite funny, but I don't think I enjoy being called one of the "bladder club" lol
Click to expand...

I've had 2 - 3 infections since this whole crohn's thing in 6 months. And I read more and more people with bladder/kidney/UTI's. Wassup with that? Is it that common for crohnnies? :stinks:
 
Im not sure! Ive had tonnes myself, I think I ve had 3 since September alone. I know mine are primarily due to my fistula (I have a fistula between my bowel and bladder... so its very easy for me to get infections!)

There must be some other sort of connection though... because they do appear to be very common!
 
Ooof, no gas for me but I just got one with my first Infusion. I feel good, everything went fine without any reactions, and overall wasn't a bad process. There was a tv with cable and a DVD player in a private room, so next time I will have to remember to get a redbox movie to watch. Instead today I saw the coverage of the Connecticut school shootings and that made me really depressed and shocked, so hopefully another tragedy won't happen when I go back in 2 weeks. So sad!

Anyhow, just wanted to follow up that my first one went okay and I feel just fine now. Hoping this treatment gets all innards back to normal!

Spinny, hope the UTI clears up quickly!
 
Last edited:
LonghornGirl said:
Ooof, no gas for me but I just got one with my first Infusion. I feel good, everything went fine without any reactions, and overall wasn't a bad process. There was a tv with cable and a DVD player in a private room, so next time I will have to remember to get a redbox movie to watch. Instead today I saw the coverage of the Connecticut school shootings and that made me really depressed and shocked, so hopefully another tragedy won't happen when I go back in 2 weeks. So sad!

Anyhow, just wanted to follow up that my first one went okay and I feel just fine now. Hoping this treatment gets all innards back to normal!

Spinny, hope the UTI clears up quickly!
Click to expand...

Congrats on things going so well, hope this works great for you!
 
how long has anyone waited for blood work to come back before starting on Remicade, I had blood work 3 weeks ago and haven't heard anything from doctor when to start the meds?
 
I had blood work done 3 weeks before Remicade, got approval from insurance, was already on anti inflammatory mesds and started on vitamins B12, calcium, folic acid and C.
 
The vitamins are just to help boost immune system as a precaution. They might not be required by the doctor, but I asked and she recommended those daily. Probably just a multivitamin is good at the minimum. Who knows, maybe it's just a waste if time but I just hope I don't catch a cold while I am sensitive with compromised immune system. My husband is a public school teacher and gets a cold annually, I might have to Lysol dysinfect him down if it happens anytime soon! Haha
 
Hi all, I am new to this form. I have been on Remicade for the last 2 years. I go every 8 weeks 10mg/kg. This drug has been life changing for me. I have put on a lot of weight (75 pounds) since I have started. Any one else have a big weight gain? I want to try to get some of this weight off. Any suggestions?
 
I've just started Remicade (just had my 3rd loading dose last week)... and I also just finished Prednisone
I've definitely put on weight, but most likely due to the pred I would assume...

I definitely need to get rid of it! (as I never really had the issue of losing weight before... this new weight isn't welcome!)... So I unfortunately dont have any tips on how to lose it, but I would sure love to hear how others do as well!
 
Me too, I'm up 10 pounds and want it gone ASAP. Not so fun trying over the holidays though. I think most people with crohn's struggle to put weight on. Any difference since starting remicade with your health?
 
@thisisme, good luck. The 3rd dose is really when I started to feel better. If you are feeling tired after your dose that does start to get better. I find that a little tylonal helps. I was so happy to get off the Pred.

besides the weight gain I have been feeling good. I no longer get flare ups at all. My energy level throughout the day seems to start good in the morning, but by night I can feel sluggish and lazy. I think a lot of that may be related to the weight.
 
I started to gain weight when my remicade started working, because before nothing stayed in me. And I am not on Prednisone.

I am so sick again. Remicade isn't working, had my infusion on Thursday and still no improvement, can't see my doc until the 26th so I wait. Maybe I will lose some of the weight I gained but not in a healthy way. Ugh.
 
elfgibson said:
Is it the Remicade that made everyone gain weight or Pred.?
Click to expand...

I think Pred started my weight gain. Once off Pred my weight continued to climb. I would add that I have had some life changing events this year. I found myself nervous eating a lot. The fact that I feel good Crohn's wise I kinda never stopped eating EVERYTHING. So is it the drugs, or the fact that I now no longer have any pain, or my excessive eating this year, I do not know. I am just hoping to start dieting soon. I have been successful in the past before I was on remicade in dieting. I am hoping I can be successful now that I am on Remicade.
 
well i have no symptoms at all, but the scopes and bios show crohns is back where the resection was 17 years ago, I have been very BLESSED to not be on any meds. for that many years. I hoping that this will put the crohns in remission, I currently have no problem eating. I try to walk so maybe if I keep that up I can keep the weight down like I have been.
 
maybe in the new year, or sooner, we could all start a crohn's let's lose the weight together club and be accountable for cheats/exercise/etc etc
 
Thanks everyone for sharing your experiences. My GI wants to start me on Remicade ASAP since I am allergic to 5-ASAs. It'll take a while to go through all the preliminary tests and get the results, though.
 
I had my second dose of Remi last Tuesday, and I am still feeling so much better energy-wise.

I did have a beer last week, first one in three months, and while it tasted delicious, I paid the price for a couple of days! Not going to be worth it :(

I was very gassy over the weekend, but I would say that was from beer, not the remi?

Still having nausea on and off, but not as bad so far.

I am almost positive I will have to eliminate gluten from my diet. For now, just cutting out breads, and I have for about a week. Today I had a roll because it looked so delicious, and the negative effects came into play immediately. Gassy, bloated, gross feeling, and gross taste in my mouth.

On a positive note: I saw my family Dr. yesterday, and for the first time in six years, my thyroid medication was lowered. She thought this might happen when I started treatment for crohn's. She also told me that my inflammation was going down and white cell count going back up. So all very positive!

I see my GI tomorrow, and now that I have my head wrapped around this whole thing a little better, I have a page of questions to ask :)
 
hi all. 6 wks in to 3rd infusion and still doing brilliant. I am still in remission. yay me.
only thing at the moment annoying me is my skin. its not great. patchy and dry and spotty or maybe that's winter and central heating?
anyway. remicade rules!
ju
 
I had blood work 3 weeks ago and still haven't started on Remicade yet, I called the doc. office yesterday and they informed me that the QuantiFERON®-TB Gold (QFT) test could only be done on Mon. - Thurs. so I went today and had more blood work for that test. So hopefully I can get started after Christmas. Thank the good Lord I'm not having any symptoms and no Flare up as we speak.
 
Spinnychick

I am thinking I gained the weight with the Remicade.
I was on Prednisone for 4 weeks so I am not sure if I
could have gained much. I am now on Entocort AGAIN
have not noticed any further weight gain.

I just want to feel normal again!?! What's normal?


Lauren
 
tots - That's my BIGGEST question, WHAT IS NORMAL? Will my weight ever stabilize? Will my hunger ever return? Will my bowel movements ever be normal consistency and normal frequency. (sorry to be gross) But what is normal? I feel like I've been in a contant flare since being diagnosed in May. But not knowing what normal is, how do I know if I'm flaring? It's sooo confusing lol
 
spinnychick said:
tots - That's my BIGGEST question, WHAT IS NORMAL? Will my weight ever stabilize? Will my hunger ever return? Will my bowel movements ever be normal consistency and normal frequency. (sorry to be gross) But what is normal? I feel like I've been in a contant flare since being diagnosed in May. But not knowing what normal is, how do I know if I'm flaring? It's sooo confusing lol
Click to expand...

I agree completely! It has been 9 years since being diagnosed and I don't know what normal is either! Weight goes up and down for me, up when in what I would call remission for me, feeling ok, not non crohn's people normal, but on a much more normal path. Then down when not in remission.
 
Hi everyone! I'm pretty new to the forum. My last scope showed that the ulcers & inflammation was back so my GI moved me from Cimzia to Remicade. I just had my 3rd loading dose of Remicade last Friday. Thoroughly enjoyed the nice long nap from the Benedryl pre meds!
 
Love the conversation about what's "normal". I usually have no pain with minimal diarrhea - but my scopes keep showing that Crohn's is boogie-ing all up & down my ileum. If I feel ok like this, I wonder how I'll feel when I'm in full remission?
 
For me, different levels of normal? lol My overall energy is back to normal, I feel stronger than I have since Sept. but everything I eat still causes anything from discomfort and gas right up to two days of pain and bathroom emergencies lol
 
I wish I knew normal!
As soon as I was diagnosed (which came out of left field) it was a sudden.. "holy crap, are all these issues ive had for years because of this!?" I always thought that was just my "normal"...
I've never had significant issues with BM's, but I do have the painful gas (or as I call it: "Stomach bubbles" lol), and just a lot of pain...

Now Im having a lot of issue with reflux and nausea whcih Ive never had before, and joint pains... i feel like im 80 years old!
My GI gave me tecta for the reflux in hopes it will help, as she thinks its possible my crohns if further up the tract and in the stomach... but she also thinks its possibly a side effect of the Imuran... and if the Tecta doesnt work, I will have to quit the Imuran :( ... boo

Thats my rant for the day!! (which was intended to be a reply on the normal topic... but as per usual, turned into a rant! heehee)
 
Hi FrancisK7! Wow, another Canadian on this thread, Crohn's must be contagious lol. Um, the remicade infusion takes about 2 hours for me. I also have a fifteen minutes beforehand for a steroid drip of some sort. Bring a book, tablet, or something, I bring a blanket cuz I freeze too. Are you starting soon?
 
I have UC, but same family ;)

I should be starting in February if my lung X-Ray is clean. When my GI realized I was allergic to 5-ASA he put a rush on my tests but I just had them. The blood test results take a month to receive, apparently. Plus it's Christmas and New Year... and we the least efficient health care in Canada.

Until then I'm just reading up on things :)
 

Similar threads

B
My healing story: towards full recovery from UC
Replies
2
Views
2K
kisseefitzrandolph
K
V
My Novel, Pain in My 🍑
Replies
1
Views
4K
valleysangel92
valleysangel92
RoyW
My tips /advice after being in remission for 10y
Replies
6
Views
5K
Cliffandmorgane
C
awoenker12
Starting Remicade
Replies
10
Views
3K
Jelly loves Peanut butter
J
S
SIBO & Infection Experience (Crohn-like symptoms)
Replies
1
Views
12K
chrohnotrigger
C

Latest posts

Back
Top