Remicade Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

I was diagnosed in May, so it's all new to me. Tried a ton of different meds and nothing has gotten me into remission. So I'm now on remicade, had my first dose last month and second loading dose last week. Seems to be a miracle drug for most.
 
@FrancisK - I know my first infusion took pretty much the full 4 hours I was scheduled for... They took time to get everything setup and go through their list of questions... then I had my premeds (Benadryl and Steroids) which took about 20 minutes each... and then the Remicade, which they ran very slow to start with since it was my first time. The enture infusion was done within 3 hours, but I was required to stay an additional hour to make sure I had no reactions (I dont have to do that anymore!)

@Spinny - Weather is interesting here in Toronto! We are expecting some sort of "winter" storm, but pretty much all we will get is a lot of rain, a tiny bit of snow, and some freezing rain!
All i want is snow for the holidays! But its not looking too good :(
 
We're supposed to get snow tomorrow too.

I was able to sign a waiver so that I didn't have to wait the hour after the infusion.
 
thisisme said:
@FrancisK - I know my first infusion took pretty much the full 4 hours I was scheduled for... They took time to get everything setup and go through their list of questions... then I had my premeds (Benadryl and Steroids) which took about 20 minutes each... and then the Remicade, which they ran very slow to start with since it was my first time. The enture infusion was done within 3 hours, but I was required to stay an additional hour to make sure I had no reactions (I dont have to do that anymore!)
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Same for me, I was there from 9 am to 1pm for my first infusion. I felt like it was taking forever (even with a little nap).
 
Hi everyone. New to the forum. 27 yr old female, been diagnosed with crohns for about 4 years. i have an 8 month old son. Just started Remicadee last week. So far it's hard to tell how well it's working. Had a couple days of feeling great, then the excruciating stomach pains were back. Now I just feel blah. Not the worst, but certainly not as good as I was hoping I'd be feeling. Does this sound about normal for just starting? I have my next injection next week. Hope everyone had a nice holiday.
 
Hey! Welcome!
I know for me, my GI didn't expect me to see much improvement at all until at least my 3rd infusion. Apparently everybody responds differently... some see an instant improvement, others take time!
So hopefully the Remicade starts to work for you soon! Good luck!
 
wecome newbees,
back to the normal question.
since starting remicade, I've had normal poos. formed, no blood or mucous and once a day. yay me.
my energy levels are brilliant too. and I don't have to check the toilet anymore. woop woop. merry Christmas.
ju
 
had the quantiferon test on 12/18 so can't start until they get the results back from that test, this has been going on since before thanksgiving; which i had the test on a Friday after thanksgiving and found out 3 weeks later that they can't do that test on a Friday, duh the girl should have told me when she took my blood you would have thought.
 
I hear ya Mrs Gibson, it sure ain't fun to wait.

I'm waiting on results myself before we can start, and I'm allergic to 5-ASAs, so until I do, there is no medication I am taking which is helping my colitis.

Nothing prescribed anyway.
 
i was on Pentasa and the doc took me off so I'm currently on no meds., and no symptoms except for Christmas I ate took much junk food but really didn't have a bad flare just felt bloated alot.
 
Wanted to give hope on "normal"
My son started remicade in August after almost a year of failing the other meds .
Shortly after the third infusion
He was able to have 1-2 soft formed BM a day without miralax( constipation was his issue since age two)
His vomiting, stomach pains, joint pains , fatigue, mouth ulcers , vasculitis ,
Rectal prolapse, temenusus , and blood are all gone .
He has gained weight and is starting to grow again .
The infusion takes a total of four hours - 2 hours for the actual iv.
Most adults I have talked to on remicade say they felt 100% back to normal by the 6 th infusion .
Since my son is so young and has been sick for so long I am not sure he has ever known what normal is but I think we are pretty close now.
 
Started my first injection on dec 28. Could actually get out of bed without assistance the next morning (I have crohns arthritis really bad). My belly is also pretty good. Almost seems too good to be true. Next injection is jan 10th
 
Nelle, I hope it just keeps improving for you!! It is good to hear you are getting some results quickly! Good luck with the next infusion!
 
Thanks Clash.
Also should post that the nurse in the clinic did tell me that the success rate for remicade is higher in patients who have not had surgery and I have not, even though I was diagnosed in 1997 and have had some severe flare ups.
 
I was supposed to go for my 2nd infusion on Friday but somehow it didn't get set up in time (I think my Dr.'s office dropped the ball there, but they haven't admitted it). So now I'm on the books for Thursday and will have my 2nd one done. I was kinda mad I couldn't get it in before the end of the year since I had already met my deductible and it would cost less upfront, but oh well...

I haven't noticed much difference since the first one was done, but as mentioned in this thread, I'm uncertain about what is "normal" anyhow, so maybe I'm not sure how to gauge it just yet.
 
my little penguin said:
Wanted to give hope on "normal"
My son started remicade in August after almost a year of failing the other meds .
Shortly after the third infusion
He was able to have 1-2 soft formed BM a day without miralax( constipation was his issue since age two)
His vomiting, stomach pains, joint pains , fatigue, mouth ulcers , vasculitis ,
Rectal prolapse, temenusus , and blood are all gone .
He has gained weight and is starting to grow again .
The infusion takes a total of four hours - 2 hours for the actual iv.
Most adults I have talked to on remicade say they felt 100% back to normal by the 6 th infusion .
Since my son is so young and has been sick for so long I am not sure he has ever known what normal is but I think we are pretty close now.
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yay what a relief for you finally.
cant imagine a young child with this disease.
good for you for making the right choice for him.
I felt better after the 1st infusion and im heading for my 4th on Friday.
happy new year.
ju
 
Hi everyone. It's been a while since I've been online. I had my first infusion December 28th. During the infusion and for the rest of the day I was miserable, very sick to my stomach and a bad headache. I've had a headache since the infusion. I have seen no improvement and have had a really bad pain in the left lower side of my belly. The nurses at the clinic were very informative and very caring. They did tell me that since they have been working at the clinic, they have observed patients who have had bowel re-sections having less success with remicade. Once I heard this I was obviously disappointed and felt like my hopes had just went down the drain. After thinking about it, it made sense that I would not see the same results as someone who has all their bowel. I currently have about 9 inches of large bowel left and have had a few feet of my small bowel removed. It only makes sense that no matter what kind of drug I am on there is no way that my digestion is ever going to be normal or my bowel movements. I am still hopeful that the remicade will help with the ulcers, inflammation, pain and joint pain. My doctor told me that it may be a few months before I know the full effect it will have on me. Ok... that's my ramble for today :) It's nice to have a place to vent!
 
barrett said:
Hi everyone. It's been a while since I've been online. I had my first infusion December 28th. During the infusion and for the rest of the day I was miserable, very sick to my stomach and a bad headache. I've had a headache since the infusion. I have seen no improvement and have had a really bad pain in the left lower side of my belly. The nurses at the clinic were very informative and very caring. They did tell me that since they have been working at the clinic, they have observed patients who have had bowel re-sections having less success with remicade. Once I heard this I was obviously disappointed and felt like my hopes had just went down the drain. After thinking about it, it made sense that I would not see the same results as someone who has all their bowel. I currently have about 9 inches of large bowel left and have had a few feet of my small bowel removed. It only makes sense that no matter what kind of drug I am on there is no way that my digestion is ever going to be normal or my bowel movements. I am still hopeful that the remicade will help with the ulcers, inflammation, pain and joint pain. My doctor told me that it may be a few months before I know the full effect it will have on me. Ok... that's my ramble for today :) It's nice to have a place to vent!
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I've had two doses and am not better or worse. From what I've heard people usually see results after third loading dose. I felt bad after my first one but second one not at all. Hang in there. :thumleft:
 
Hi guys! Love the infliximab gang! I started my remicade in September 2012. It's amazing stuff! Hope youve all had the same success as me. Does anyone have any info of using the infusion whilst pregnant? I'm concerned but hav been advised o stay on, thanks :) xx
 
Louise89 said:
Hi guys! Love the infliximab gang! I started my remicade in September 2012. It's amazing stuff! Hope youve all had the same success as me. Does anyone have any info of using the infusion whilst pregnant? I'm concerned but hav been advised o stay on, thanks :) xx
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ru pregnant or are you thinking about getting pregnant?
 
Just a question.... Who is able to work? I've been off work since October and now have to apply for Long Term Disability. Just wondering how everyone is handling work or not working. I'm only 32 years old and doesn't feel right that I am applying for LTD. I know that I am not capable of working right now but it's frustrating.
 
I have been off one job since may. Returned to other one in august. Have u started remi? What symptoms keep you from work?
 
My bm's happen at night so I am usually tired. The job I am back to has been very accomodating but my other one is on my feet in a bank and not feasible. Hopefully the remicade will work and help you to get back to work. What kind of work do you do?
 
I'm a human resources specialist. Constant meetings which are difficult because of bathroom use. I hope it works too. Glad to hear you are back to work. Most days I have a couple of good hours and if that continues I would like to have those good hours with my daughter, she is 3 and not have to work which leaves no energy for her.
 
Yes oh got that right. I also find that most people think that crohn's is food related and that you just have diarrhea a lot. There is a lack of understanding with the general public. Sometimes I feel like people think its my own fault because of what I eat.
 
Going for my third "loading dose" infusion this Thurs Jan 10, hoping to see some of this miraculous marked improvement that so many see after their loading doses. Any idea what this miracle will seem like? Like will I stop cramping and pooping all the time and just be normal again? :poo:
 
I thought I would come in and post an update :) I had my second Remi treatment on Dec.19th, and the next day I felt so much better! I had my energy back! I didn't feel like a walking feeble zombie! And my abscess in my bottom went away! Nothing left but scar tissue! Then a couple of days before Christmas, my tummy started feeling normal! I was so happy!!! Then on Sat night(two days ago) my abscess reared it's ugly head...and has been growing since :( It's painful and I am worried as the opening has healed over. I am on my own at work as my Dad/boss is away on vacation.

I do have treatment scheduled on Wed., so I am hoping against hope it takes it away again! I do not want to go back to hospital! I also put a call in to my GI, so waiting to hear back from him.

Really discouraged and do not want to go through all that again! I feel like I screwed myself by telling everyone how good I was feeling!
 
Spinnychick, during the loading doses, C had no symptoms. He went from pain, cramping, some D and severe joint pain to no symptoms. Even in the first few weeks after the regular infusions he would have nosymptoms. Since adding MTX to Remicade he has had no symptoms. I hope this is the infusion that it starts working for you and you get relief from symptoms, I think the goal is no symptoms but it can be different for each person. Hope this helps!
 
After waiting an eternity my Remicade start date is next Thursday
Big problem---I have had flu for a week now and still coughing and achy. Temperature is down today.
The Remicade Coordinator says as long as I am not on antibiotics and don't have a fever they will go ahead with it.
I have the option of reschedule to the following week.
I am so sick and tired of all the waiting it sounds reasonable to have it this week on their terms.
How does everyone else think about this and what would you do in these circumstances.
My opinion is divided.
Trysha
 
I'm joining the iv league! been on a year and a half.. gotta j pouch, misdiagnosed and I actually have Crohn's, buuuut it's good I'm going to nthe bathroom 50% less for sure, but now I got fistulas,, new battle not going great. going to see surgeons today.. wanh wanh!
 
i didn't know i had a fistula... mine is small bowel to bladder. They kinda stumbled upon it when trying to find out what was wrong with me... they thought it was endometriosis, then an ultrasound showed an anomaly on my bladder, so I was sent for a cystoscopy. The cystoscopy showed something pushing on my bladder, so off for an MRI I went... the MRI showed the connection between the bowel and the bladder. At that point it had not yet opened into the bladder, but it appears it since has...

I think it all depends on the type of fistula... some are very obvious as you can actually see them, whereas others not so much!!!

completely off topic (and because I like to rant and complain! lol)... I've somehow come down with mono.. so now am at home in bed for who knows how long! gotta love a weakened immune system :p
 
Hey Spinnychick and Barrett I too had issues with some people telling me this and that. Now I tell people all the time of my disease, trying to teach them something, also its amazing when you do talk about the disease how all of a sudden others start telling me about their mom or uncle etc and that they too have this disease. There are some foods that tend to bug me like peanuts and spinach,and I avoid dairy except for a dash in my tea. I have no issues with being embarrassed anymore except when using a public washroom and there are some loud noises coming from my stall. Barrett I too am on cpp disability . You don't make much on that but every cent helps. Hoping you all get healthy and stay that way.
 
Had my infusion today guys, feeling tired but excited for the improvement I'll see in the next 3 days! Does anyone know of any long term side effects or pregnancy info? I'm 23 and want to plan for my future :) xxx
 
I have benadryl beforehand... my nurse told me that your body usually gets used to it, so it doesnt make you as drowsy...
The clinic I go to also wont give it to you if you say you dont want it!
 
Has anyone been taking Remicade for longer than ten years. I am using a naturopath now, acupuncture, myofacial release, cranial sacral release. And natural supplements. While, I have improved since last year, I have noticed that my food isn't always digesting.
I also went to 1 ulcer in intestines to 4 in less than a year.

While I am not in loose bowel mode, the joint and muscle pain, brain fog and fatigue is getting annoying... I am afraid of the possible long term effects of the Remicade. All the studies I have looked up are bull, as far being able to understand them.

oh, and has anyone lost their hair... how about any other side effects?
 
i Know I got fistulas cuz they hurt!, inflamed tissue around the rectum..yay! just unconfortable when I move! as for the allergy meds I took them the first few times then forgot once and never did since..don't see the point..
 
What happens when Remicade stops working? Has anyone had that experience. I'm being upped to every 5 weeks because of symptoms. I just wondered what else might be in Dr.'s bag of tricks.
 
i have been on remicde for about 15 years
they say dont eat 3 hrs prior to the remicade,:stinks: and that made me fill so sick all the time that long time with out food:redface:
so ill snick in a few bites about 1hr befor my remicade but it has to bee blaaaa food and very little.
when i get my remicade my breathing is a little hard but it dont last long
they give me benadrly , witch i feel it fast.
the remicade last about 2/12 hrs to 3hrs you can have something to drink and snack after a hr into it,
after my remicade my tommy hurts when i walk for about a day and i fill sick, but after that i feel so good for over a month,
living with CROHN'S what i have lern is to not eat a lot at one time to not even fill up on your food, i have trouble digesting any thing, so i have lots of many meals like snacks, every 2 hrs or so. when i wake i need food i fill sick so ill have 1 toast/ 2 hrs later ill have cut cheese /2 hrs later 1/2 sandwich/ dinner time i eat on a small plate and have real little only have a 1/2 chicken breast. some times ill eat 1 strawberry i love them so much
and so far my hair has not came, out but 2 years a go i had cancer, uterin cancer,
 
I've never heard of Benadryl? What is this for? Also have never been told not to eat prior to my infusion etc.. I have been absolutely fine. Saying that, for the 1st time I've been I'll after my infusion, I woke up the day after feeling achey, headache, sore throat, generally unwell. My partners had a cold which I've managed (for 2 weeks!!) to avoid, so it could be his finally taking its toll as I hadn't experienced these symptoms before. Again, does anyone have any experiences of using infliximab throughout pregnancy? Help... X
 
i started remicade in April 2011.i get tired after my infusion and usually get a burst of energy a few days after.i was going every 8wks now i go every 6wks.i am not sure its working.i still have inflammation in the small bowel and a fistula connecting loops of the bowel that hasn't closed.i am not in remission yet.i have a flare up every 4wks or so.we are hoping going every 6wks will help.fingers crossed.my next infusion is feb.8th.i am also taking 6mp and pentasa.
 
first infusion and feeling fine all went well, they gave me 500 mg of tyneol and a zyrtec at the beginning, so far so good. Thank the good Lord that's over now go back in two weeks
 
holly beth said:
i have been on remicde for about 15 years
they say dont eat 3 hrs prior to the remicade,:stinks: and that made me fill so sick all the time that long time with out food:redface:
so ill snick in a few bites about 1hr befor my remicade but it has to bee blaaaa food and very little.
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I've never heard this - in fact, I usually bring lunch with me and eat as I'm getting my infusion!

I'd asy WHY can't you eat befure/during.....I've been doing it for @7 years now without any ill effects from eating!
 
I don't get the benadryl, and I was never told not to eat. I had my third infusion Wed. and my tummy is pretty gurgly! My abscess, who I am calling Burt started, draining yesterday and feels less painful today, so glad :)
 
Second injection successful. Blood pressure a little elevated so I have to monitor that. I am on blood pressure meds so that might need to be adjusted. Tried to nap yesterday after my injection but felt like my heart was beating very fast. Does anyone know if elevated blood pressure and fast heartbeat might be a side affect of remicade?
 
JudithC said:
What happens when Remicade stops working? Has anyone had that experience. I'm being upped to every 5 weeks because of symptoms. I just wondered what else might be in Dr.'s bag of tricks.
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Your doc should run tests pretty regularly. One test is the trough level, which basically tells how fast our body is using the remi. The other test is an antibody test. If you have been on remi for very long, your body can start to build antibodies against the remi and they will stop it from working.

How long have you been on remi? They can up the dose, and put them closer together, as you said your doc might do. My doc right now is talking about doubling my dose, next infusion is the 20th. But I need the trough level and antibody tests first.

If remicade stops working, they will try something else, like Humira. Some people have a lot of success on humira, where they didnt have success on remi. But from what I have read, once you go off the remi, and try another drug, you cant go back to the remi.

Hope I helped some!!! Eveyone of us is so unique in our disease!
 
Nelle said:
Second injection successful. Blood pressure a little elevated so I have to monitor that. I am on blood pressure meds so that might need to be adjusted. Tried to nap yesterday after my injection but felt like my heart was beating very fast. Does anyone know if elevated blood pressure and fast heartbeat might be a side affect of remicade?
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It would be a good move to let your doctors know as soon as possible
regarding your increased heart rate.
This can happen with Remicade and should not be ignored,
Feel better soon
Hugs
Trysha
 
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Thanks for your reply J.Bug. I will talk to my Dr. about trough level and antibody test at my next appointment. My infusions are now at 5 weeks.
 
10 days without a post on here?! This can't be right!!!
Sorry... i cant stand the silence! lol

Hope everyone is doing well with their treatment!!! #4 comes February 7th! ... although, starting to see some issues come back :(
 
hi all.
been having some symptoms lately. mostly pain in lower left quadrant. maybe its inflammation and another flare starting. im on no other drugs apart form remicade.

got an emergency app with my GI on Friday so I might get some answers.
I only had my infusion 3wks ago.
maybe its not so brilliant afterall.
booooooooooo
ju
 
I had my second treatment on Dec.19th, and things turned around for the better starting the very next day. My abscess cleared right up and my stomach started feeling better. My abscess came back on Jan.5th, and on the morning of my third treatment, Jan.9th, my stomach started acting up and that very weak feeling was back.

The abscess started draining on the following day and it has shrunk to about a third of it's size. It was pretty good, but it has blistered up on the scar for the second time and is quite sore.

My stomach is not the greatest, but not the worst either. But the second treatment acted way better than the third for me. I have an appointment with my GI Feb.4th as I want to have this abscess checked and find out if I need antibiotics and or draining again. I'd rather not not got for emergency surgery again. lol

Hope everyone is doing well!
 
I'm now on remicade myself had my first infusion last wed next one this Tuesday coming.

I can't say I've seen any improvement as of yet but it's only early days.

My infusion hit me for a six ! In and out of sleep.....I fell asleep on the deck when I got home. I also got a slight swollen throat, and my arm started to hurt where the cannula was. all in an ok experience no where near as frightening as I first made myself think it would be.
 
Switched jobs and new insurance co refused remicade and want me on humira. My remi worker is going to file an appeal. Down 10 pounds in the past 2 weeks too but feeling okay other than a bit weak.
 
FRancis or spinnychick,
do either of you pay for the remicade or a portion of it.
im trying to decide if i should stay on it when i move to Canada.
how quick would i get referred and seen by a GI if i did.
ju
 
sickinlk said:
FRancis or spinnychick,
do either of you pay for the remicade or a portion of it.
im trying to decide if i should stay on it when i move to Canada.
how quick would i get referred and seen by a GI if i did.
ju
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I was 80% covered and then Remicade picked up the other 20% for my first 3 doses. Have applied to Trillium to hopefully get continued coverage.
 
spinny,
perhaps your right. im still undecided but if I take the risk and go of it and I end up very sick again, then where will I be? im considering staying on it and maybe going of it under the care of my new Canadian GI after another year or so.#
it a tough decision. I hope it doesn't affect my visa application, being on such an expensive drug.
ju
 
I can't see it affecting your visa application, hope not anyway. Best of luck with your decision. Health comes first no matter what :)
 
sickinlk said:
spinny,
perhaps your right. im still undecided but if I take the risk and go of it and I end up very sick again, then where will I be? im considering staying on it and maybe going of it under the care of my new Canadian GI after another year or so.#
it a tough decision. I hope it doesn't affect my visa application, being on such an expensive drug.
ju
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I don't think it should affect your visa application, it's not like the federal government picks up the tab for Remicade. Bonne Chance.
 
spinnychick said:
Switched jobs and new insurance co refused remicade and want me on humira. My remi worker is going to file an appeal. Down 10 pounds in the past 2 weeks too but feeling okay other than a bit weak.
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It infuriates me how insurance companies try to override the doctor's decisions. Sometimes the drug company does a compassionate release of the Remicade, talk to your doc about it. I'm in Kingston and my doc said the drug company has done it quite a few times for their patients.
 
Thx AlliRuns. Being in Kingston, do you have an assigned remicade rep? I do here in Ottawa. When were you diagnosed with cd? Seems we joined the forum same time.
 
spinnychick said:
Thx AlliRuns. Being in Kingston, do you have an assigned remicade rep? I do here in Ottawa. When were you diagnosed with cd? Seems we joined the forum same time.
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Yes, I have an assigned rep, she's pretty awesome. I get my infusions at an AIM clinic, though my hubby's cousin is a nurse at the GI clinic here and she said they also do infusions at the hospital. I'm not sure how it's decided who goes where.

I was diagnosed in November, though I developed my first fistula over 7 years prior to that, lived in 5 different provinces, but it wasn't until I moved to Kingston that I found a doc who was committed to figuring it out; one advantage of living in a city with a teaching hospital that has a GI program.
 
AlliRuns said:
Yes, I have an assigned rep, she's pretty awesome. I get my infusions at an AIM clinic, though my hubby's cousin is a nurse at the GI clinic here and she said they also do infusions at the hospital. I'm not sure how it's decided who goes where.

I was diagnosed in November, though I developed my first fistula over 7 years prior to that, lived in 5 different provinces, but it wasn't until I moved to Kingston that I found a doc who was committed to figuring it out; one advantage of living in a city with a teaching hospital that has a GI program.
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Wow you're really new to all this also. Is the remi working? How long have you been on it? I go to AIM also.
 
spinnychick said:
Wow you're really new to all this also. Is the remi working? How long have you been on it? I go to AIM also.
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Just started last week, so not at the point where I know if it's working yet. Crossing my fingers.

What's the GI care like in Ottawa? My husband and I are both in the CF, I will probably be released now that I'm diagnosed, but he will still be in. I suspect a posting to Ottawa will be in the cards eventually though we're hoping to hang on to being in Kingston for as long as possible.
 
My GI is great, one of the best in the city supposedly. He's done wonders trying all sorts of different meds to get me into remission. I worked as a civilian for CF and was also married to a member of the CF. Would they really release you for CD? So many can still work just fine. Is your case really severe? How long have you guys been posted in Kingston? I just started remi a couple months ago and have had the first 3 loading doses and so far so good. Problem now is with other issues cropping up ... osteopenia, rheumatoid arthritis, anemia, etc. Have you lost alot of weight? Are you on a restricted diet?
 
spinnychick said:
My GI is great, one of the best in the city supposedly. He's done wonders trying all sorts of different meds to get me into remission. I worked as a civilian for CF and was also married to a member of the CF. Would they really release you for CD? So many can still work just fine. Is your case really severe? How long have you guys been posted in Kingston? I just started remi a couple months ago and have had the first 3 loading doses and so far so good. Problem now is with other issues cropping up ... osteopenia, rheumatoid arthritis, anemia, etc. Have you lost alot of weight? Are you on a restricted diet?
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Some people get to stay in, I know a few. My symptoms aren't really severe but I violate the "framework" for retention. The framework is basically if you have any of the symptoms on list A, and have been on any of the medications on list B, they recommend release. The first thing on list A is fistula, and Remicade is on list B. The decision is still up to D Med Pol. I'm still on my first temporary medical category, so it will be awhile before they even see my file.

Been in Kingston since APS '10, was actually suppose to be posted this year, but because of my medical situation we are at least staying another year which isn't the end of the world, there are worse places to be. Plus I really like my docs here so would prefer not to have to find a new one just yet.
 
Hi,
I was diagnosed almost a year ago with crohns. A few months ago I started remicade- after multiple failed attempts to taper off prednisone (was on it most of the year) and did not respond to and had reactions to several of the different meds (including the immunosuppressants). I was getting sicker and sicker so we moved to remicade. Remicade has definitely made a big difference and it got me off prednisone! I have been finding that it wears off after a few weeks, and then I end up with flares/symptoms between infusions- so we have been modifying the dose and schedule. I am now on an increased dose, and just moved to a shorter schedule. I am hopeful these changes will make the difference! Just wanted to say hello!
 
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spinnychick said:
My GI is great, one of the best in the city supposedly. He's done wonders trying all sorts of different meds to get me into remission. I worked as a civilian for CF and was also married to a member of the CF. Would they really release you for CD? So many can still work just fine. Is your case really severe? How long have you guys been posted in Kingston? I just started remi a couple months ago and have had the first 3 loading doses and so far so good. Problem now is with other issues cropping up ... osteopenia, rheumatoid arthritis, anemia, etc. Have you lost alot of weight? Are you on a restricted diet?
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hi spinnychick.you mentioned rheumatoid arthritis.i started remicade in april 2012.i started out every 8 wks and my flares recently started getting closer and closer(every 4wks) so i started having infusions every 6wks.about 3 months ago i started having pain in my hips and this may sound strange,i also have pain in my pointer finger.it actually really hurts to bend my finger and REALLY hurts if i lightly hit my finger on anything.i kinda feel like a big wuss bringing this up to my doctor but im a little concerned it will get worse.i was wondering how long after you started remicade did you start having joint pain?and do you take anything for the arthritis?and how did they test for it?its strange we all get used to the normal pains we have and then a new one pops up.but i guess we all should expect the unexpected.
 
tsm1110 said:
hi spinnychick.you mentioned rheumatoid arthritis.i started remicade in april 2012.i started out every 8 wks and my flares recently started getting closer and closer(every 4wks) so i started having infusions every 6wks.about 3 months ago i started having pain in my hips and this may sound strange,i also have pain in my pointer finger.it actually really hurts to bend my finger and REALLY hurts if i lightly hit my finger on anything.i kinda feel like a big wuss bringing this up to my doctor but im a little concerned it will get worse.i was wondering how long after you started remicade did you start having joint pain?and do you take anything for the arthritis?and how did they test for it?its strange we all get used to the normal pains we have and then a new one pops up.but i guess we all should expect the unexpected.
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I have pains in my hips too, when lying in bed. Also in my tailbone in the bathtub, had to get a cushion lol. Back pain started around the time I started remi. I am by no means any expert, am new to all this also, but from what little I've heard, rheumatoid arthritis is another auto immune disease, which we, having one already (CD), are more susceptible to. My GI sent me for xrays of the joints in question, my family doc is sending me to a physiotherapist to see if he can shed any light on the pains, and they may send me for an MRI as well. Hope you feel better soon. Hang in there.
 
Hello everyone with CD and on Remicade!

Just had my 4th infusion after a pretty bad flare, couldnt eat..so many symptoms etc.

Last infusion was on 19th dec and was due to have next on the 13th Feb (8 weeks) but 3 weeks later, symptoms came back and felt worse than ever! Spoke to the consultant and agreed to bring infusion forward, now scheduled for every 6 weeks. I had it a few days ago and feeling good so far!

Sorry if this question has already been posted (so many pages), has anyway had to bring infusions down to every 6 weeks due to symptoms coming back earlier?

I just hope I can make it through 5 weeks atleast!!
 

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