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Crohn's Disease Forum

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xX_LittleMissValentine_Xx said:
My first infusion tomorrow!
Eek!
I'm a bit nervous!
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Im getting my 3rd infusion next week. Have not had any reactions and have been pretty much symptom free for the past 10 days. Remi has been a life saver. Anything new is always a bit frightening, just try to keep positive. Bring a book, tablet or something to distract your mind and you'll do ok. Hope all goes well.:thumright:
 
sfmreb2 said:
I have been getting Remicade for over 10 years now with no reactions. I take a book and fall asleep.
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10 years, wow, that's amazing. I'd read or heard somewhere that 50% of people on remi grow immune to it after 12 months, guess those rates are a wash. 10 years is awesome. Hope it works 10 years for me.
 
spinnychick said:
10 years, wow, that's amazing. I'd read or heard somewhere that 50% of people on remi grow immune to it after 12 months, guess those rates are a wash. 10 years is awesome. Hope it works 10 years for me.
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I have been on Remicade since October 2005.....still working here!

I'm somewhere around infusion #50!
 
Spinny, I think I might be one of those 50% that might have grown immune to it. My dose has been increased now and I'm at 5 week intervals. D is gone but I have pain, although less than before the increase. It is now tolerable and I deal with it with only tylenol.
 
JudithC said:
Spinny, I think I might be one of those 50% that might have grown immune to it. My dose has been increased now and I'm at 5 week intervals. D is gone but I have pain, although less than before the increase. It is now tolerable and I deal with it with only tylenol.
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I'm wondering about mine too. My D isn't gone, never has been. And this 4th dose didn't seem to make any difference at all. Flared after 5 weeks of dose 3 too. No increase in remi amoutn or frequency as of yet though. How long have you been on it JudithC? What kind of pains? I get intermittent pains down either of my sides (like the area between lower rib cage and hips, right down each side)
 
I've been on Remi a year. Stopped working last December but GI wants to keep on trying. I have been in a flare for about 4 months, sometimes bad. Yes pains, sometimes cramping, sometimes steady like right now, seem to be intermittent and on left or right of tummy, and often lower on my right side where I'm told I have a stricture. It doesn't seem to matter much if or what I eat or don't eat. I'm going to see a Reiki Master this week, and she also has what she considers herbal aids for this. Nothing ventured nothing gained. If it helps I will definitely post.
 
How did you find out you had a stricture? I'm sorry if I am being nosey or invasive? I still consider myself new to this disease and very lost and a sponge for information.
 
Not a problem at all Spinny. My colonoscopy (under general anesthesia) at which GI was able to go through far enough, showed scar tissue and a stricture. Since I've never had surgery n tummy, we think scar tissue built up from years of undiagnosed crohn's. I feel fairly new to the disease too, and am always learning something new. Only a couple months ago I finally connected my joint pain to my Crohn's because of an article I read in Crohn's advocate. Why aren't Doctors telling us these things rather than let us worry ourselves about it.
 
I agree ... I have had to learn so much more myself. My doctor sees me, prescribes medication, weighs me, pushes on my tummy and sends me off. It's difficult for sure. Last I saw him I asked him to stop with all the meds and just cut it out and he said no way that CD patients never have surgery but I know people who've had it successfully. Sigh. Thank you for sharing your insights with me.
 
I just got back from my first infusion!
It went well :) Took two hours to go through and then had to wait two hours after, so I've only just got back really.
When the nurse said about what side effects to look out for as a reaction, my lips started tingling. And I thought, thats just because you are thinking about it!

This happened to me when I was 14 and I was getting tested to see if my peanut allergy had gone. I had a cannula in in case I needed adrenalin, and they said if you feel anything just let us know and we will stop. They first rubbed peanuts on my lips and they were tingling. But I didn't say anything because I really really wanted not to have an allergy anymore. The test continued and by the end of it I was eating a thick layer of peanut butter so I was fine!

Anyway, occasionally I thought I was getting breathless but again, I thought I'm probably just panicking! I think from growing up with a peanut allergy and having to carry adrenalin around with me, the fear of anaphylaxis is kinda programmed into me!!

But yeah It was all fine. I'm feeling a bit tired and headachy now but I've had headaches all weekend. This could be coz I'm on my period.

Also, when I got home I had horrible green diarrheah. I'm guessing this is just coincidence rather than a side effect. Again could be coz of my period.

I know they have to tell you what to look out for but it makes you kinda paranoid! I'm sure this will wear off though. I used to be like it with bruises when I first started azathioprine and now five years later I don't think twice about them!
 
xX_LittleMissValentine_Xx said:
I just got back from my first infusion!
It went well :) Took two hours to go through and then had to wait two hours after, so I've only just got back really.
When the nurse said about what side effects to look out for as a reaction, my lips started tingling. And I thought, thats just because you are thinking about it!

This happened to me when I was 14 and I was getting tested to see if my peanut allergy had gone. I had a cannula in in case I needed adrenalin, and they said if you feel anything just let us know and we will stop. They first rubbed peanuts on my lips and they were tingling. But I didn't say anything because I really really wanted not to have an allergy anymore. The test continued and by the end of it I was eating a thick layer of peanut butter so I was fine!

Anyway, occasionally I thought I was getting breathless but again, I thought I'm probably just panicking! I think from growing up with a peanut allergy and having to carry adrenalin around with me, the fear of anaphylaxis is kinda programmed into me!!

But yeah It was all fine. I'm feeling a bit tired and headachy now but I've had headaches all weekend. This could be coz I'm on my period.

Also, when I got home I had horrible green diarrheah. I'm guessing this is just coincidence rather than a side effect. Again could be coz of my period.

I know they have to tell you what to look out for but it makes you kinda paranoid! I'm sure this will wear off though. I used to be like it with bruises when I first started azathioprine and now five years later I don't think twice about them!
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GREEN DIARRHEOA? yuk
if it keeps up contact your GI. it could mean you have an infection.
had you anything to eat prior to that. sometimes it means you've nothing in your stomach and green bile from the pancreas just comes out of ya.
ju
 
well if it doesn't happen again you can write it of as a blip and think no more of it.
good your feeling well. and yeah if you had an infection it would show up in the urine as protein, albumen I think. but im not while sure on that so I looked it up

Methods: One thousand and seventy six unborated urine samples were dipstick tested at the point of care using an automatic strip reader. Quantitative results for the four infection associated markers—leucocyte esterase, nitrite, blood, and protein—were compared with the results of conventional laboratory microscopy and culture.

so yuk you're right it would of shown up.

ju
 
You guys get urine tests before your remi treatments? I never have. They take bloodwork and send it off but no testing pre infusion.
 
that's right
I get bloods done a few days before and on the day I have my urine tested and I get weighed and I answer a questionnaire of symptoms and stuff.
ju
 
Wow, we get asked our weight, no urine test and bloodwork done but only to send off to doc to see where we were at pre treatment.
 
They don't even ask my weight any more - no urine testing, I get bloods drawn every other infusion - so every 4 months.....just get asked if I'm sick, they take my temp, and BP - and sometimes listen to me breathing and my belly....
 
Hi,Not sure if I have done this right. I'm new to this forum stuff but would like to tell my story. I have had CD for over 40 years now and during that time have had 5 operations including resections and strictoplasty. Ive been on all the drugs I have seen others on on here, and at the moment don't feel to bad. My latest xray reveals 3 areas of active CD and one is becoming strictured ( hope my terminology is correct). I have now been advised to go onto Infliximab. I have read plenty about this drug and feel very aprehensive but have agreed to go on it. At the moment apart from the usual visits to the loo, acheing joints and some dry skin I feel fine. I think the fact that I feel fine at the moment made me question why I should go onto this drug knowing some of the side effects. I am really glad I found this forum as it has made me feel a little better about going on with the Infliximab ( first infusion on 10th April 2013 ). I also had a heart attack some 20 years ago but they say it will be fine. Thanks for this opportunity to chatter. By the way my son was also diagnosed with CD 3 years ago at the same age I was when I was diagnosed.
 
Hi Splinter
Welcome to the forum.
Remicade is supposed to be good for people with strictures especially.
It can act very quickly for some people with crohn's as fast as after the first treatment in some cases.
I have just had my first three doses--so far so good.
My appetite has returned after many years and loo visits down to one or two daily.
I have had a few joint aches but then they were already there pre Remicade.
Sad news that your son has it too.
Fell better soon
Hugs and best wishes
Trysha
 
hi splinter and welcome to the forum. im also on remicade and I also had my doubts about it before I started. im glad I did because its given me freedom to do so much more with my kids. when I was sick (thank god I was at my worst during the summer months) I couldn't even contemplate going anywhere in the am. once I started remicade it all disappeared.
remicade still scares me and I try not to read the bad press on it but we must enjoy the "now" and make the most of things while we are well.
take comfort in the fact that'll you will we well monitored and have regular bloods done before each infusion (im assuming as your in the Uk its fairly similar to Ireland). they take every change in your status seriously and have systems in place for most scenarios.
anyway best of luck and keep on posting as many questions as you like. there's always some1 here to answer.
ju
 
I had my first Remicade infusion on Wednesday. I have one area of stricturing where I had resection surgery more than 20 years ago, and I have a fistula that came on last August, so now was diagnosed with perianal Crohns. Since August I've been on 4 rounds of Cipro/Flagyl, Prednizone, but nothing helped, so Remicade or Humira was prescribed. I had a seton put in the fistula about 2 months ago.

I decided to go with Remicade because it's been around longer, I'm apprehensive about giving myself the shots, and the Humira prescription seemed to be hitting roadblocks with my insurance company. Remicade was approved right away. I was very hesitant because of the side effects, but finally got on board with it mentally because I just haven't felt well, and so want this fistula to heal.

So far no adverse reactions, and today I'm feeling better than I have in months. I'm afraid to hope that it's the Remicade working. The main difference I'm noticing is that for the last few months, after my morning BM, even a good BM, I experienced pain in the rectal area and sluggishness for the first half of the day. Today I haven't felt that at all! I had a great BM, and felt fine ever since. Could it already be helping?
 
I have had four and always feel better the next day and from the second one on, continuously better. Hope that is the case for you too! :)
 
Iv had two so far and most of my symptoms are gone! Felt better and better after each. I get my third next tuesday then going to 8wk maintenance. Glad to hear aloe your feeling better by the second or third you should know how well remi will work for you. Best of luck to ya.
 
Wow! I'm so excited to hear your experiences. I was afraid to get my hopes up that it would really work for me. I am keeping my fingers crossed.
 
aloe said:
Wow! I'm so excited to hear your experiences. I was afraid to get my hopes up that it would really work for me. I am keeping my fingers crossed.
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yeah, ive been on it 6 months and apart from a tini tiny flare last week ive been 100% remission. woo hoo.
:dance::dance:
ju
 
I have been off prednisone completely now for nearly two weeks, no sign of any symptoms returning yet. Still feeling good aswell :) the only thing I still have is mouth ulcers. Besides the few days after my first infusion they have stopped healing. They aren't getting worse which is a positive, and they don't really hurt, however my lip still appears swollen which is starting to get annoying now. I will see what my doc says about them when I next see him. Got my third infusion in 3 weeks so fingers crossed it continues to work.
 
I've been on it since 2001 and saw results right away. I went from being bathroom and couch ridden, tons of weight gain from the prednisone, with frequent hospital trips to remission and mild flares :). It was awesome! But now over the past year my Crohns is progressively worse. I've had to nock down my hours at work (actually pretty surprised I still have a job), the pain is back, fatigue, losing friends again, the abscesses, etc. I'm getting my first double dose tomorrow. I desperately want it to work. I'm so scared Ill go back to the way I was.
 
Heading out at noon for a 1230 appointment for my infusion.....belly wasn't right thi s morning, 4 trips to the loo so far today, which is unusual for me....don't know if the fried fish we had for dinner last night had anything to do with it.....

Oh well...hope to get some napping in today!
 
Hi everyone,

I had my second dose of infliximab approximately 2 weeks ago and this morning I woke up and had a nose bleed. This is the first time I've had a nose bleed in over 7 years.
Could it be related to the infliximab or do you think its completely random and unrelated?

Thanks!!
 
Alexce93 said:
Hi everyone,

I had my second dose of infliximab approximately 2 weeks ago and this morning I woke up and had a nose bleed. This is the first time I've had a nose bleed in over 7 years.
Could it be related to the infliximab or do you think its completely random and unrelated?

Thanks!!
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I am not sure if it is a result of the Remicade or not, but I would definitely call your your dr. to ask about it.

It could be dry air, or it could be a sinus or ear infection as well.

Hopefully it doesn't happen again! Let us know what the Dr. says if you call :)
 
Just put a call into my GI because he put me on Imuran a month ago in addition to remicade and it seems I'm getting worse. Weight loss, fatigure, complete loss of appetite, increased crazy nausea ... I feel horrible and don't want to continue on Imuran and hope he gives me the green light to go off. :ybatty:
 
spinnychick said:
Just put a call into my GI because he put me on Imuran a month ago in addition to remicade and it seems I'm getting worse. Weight loss, fatigure, complete loss of appetite, increased crazy nausea ... I feel horrible and don't want to continue on Imuran and hope he gives me the green light to go off. :ybatty:
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I am so sorry you are feeling so bad! What dose are you taking? I was crazy nauseous on 150mg, but no side effects on 100mg. And I tried 150 twice.

Hopefully you are feeling better soon!
 
JoFowler said:
I am so sorry you are feeling so bad! What dose are you taking? I was crazy nauseous on 150mg, but no side effects on 100mg. And I tried 150 twice.

Hopefully you are feeling better soon!
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He's only got me on 25 mg, major low dose lol. I am not a good genetic match for it, like I'm technically not supposed to be on it at all, was flagged as a danger. Not even sure if this is what is making me sick, but it seems to have started two weeks after starting it and I'm down to 114 pounds and at 5foot 9 that's underweight.
 
spinnychick said:
He's only got me on 25 mg, major low dose lol. I am not a good genetic match for it, like I'm technically not supposed to be on it at all, was flagged as a danger. Not even sure if this is what is making me sick, but it seems to have started two weeks after starting it and I'm down to 114 pounds and at 5foot 9 that's underweight.
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Yes, underweight for sure! Well hopefully you can stop the drug and see a quick improvement! (hugs!)
 
spinnychick said:
He's only got me on 25 mg, major low dose lol. I am not a good genetic match for it, like I'm technically not supposed to be on it at all, was flagged as a danger. Not even sure if this is what is making me sick, but it seems to have started two weeks after starting it and I'm down to 114 pounds and at 5foot 9 that's underweight.
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I'm on 20mg! Thought I was the only one on such a low dose!
 
Been on it for nearly 5 years now. I have TPMT deficiency. They started me off on 100mg and then realised about the deficiency, so I went down to 50mg. Then a few years in I got bad liver results. so they took me off it completely and when my blood results went back to normal I started off at 10mg and slowly went up to 40mg where I stayed at until a couple of weeks ago when they told me my body wasn't using it all so to go down to 20mg.

I shouldn't really be on it tbh but I think they were reluctant to put me on anything else coz it did seem to work. When I realised I had fistulas was when I started to push for infliximab (a year ago).
 
xX_LittleMissValentine_Xx said:
Been on it for nearly 5 years now. I have TPMT deficiency. They started me off on 100mg and then realised about the deficiency, so I went down to 50mg. Then a few years in I got bad liver results. so they took me off it completely and when my blood results went back to normal I started off at 10mg and slowly went up to 40mg where I stayed at until a couple of weeks ago when they told me my body wasn't using it all so to go down to 20mg.

I shouldn't really be on it tbh but I think they were reluctant to put me on anything else coz it did seem to work. When I realised I had fistulas was when I started to push for infliximab (a year ago).[/QUOT

Thanks for sharing.
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xX_LittleMissValentine_Xx said:
Been on it for nearly 5 years now. I have TPMT deficiency. They started me off on 100mg and then realised about the deficiency, so I went down to 50mg. Then a few years in I got bad liver results. so they took me off it completely and when my blood results went back to normal I started off at 10mg and slowly went up to 40mg where I stayed at until a couple of weeks ago when they told me my body wasn't using it all so to go down to 20mg.

I shouldn't really be on it tbh but I think they were reluctant to put me on anything else coz it did seem to work. When I realised I had fistulas was when I started to push for infliximab (a year ago).
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Do you remember what are the liver tests you had done? I have restarted aza after some time and this time I am getting some itching. Someone in this forum suggested that I do some liver function tests.
 
Yay, off the Imuran and just on remicade. Was sent for a test for celiac disease and also being sent for a CT scan to check pancreas and something else.
 
Hi Everyone!!!

I am new to the forum and soooo glad I found it. I was diagnosed with Crohn's almost 3 months ago. I have had 3 Remicade infusions and just had my last one 2 days ago. I have had what I believe is a reaction to the medication each time. I feel as tho my blood is boiling and I look as tho I have been out in the sun for 2 days straight. I have called my GI dr and he acts as tho I am crazy and tells me to take a benadryl and it should all stop?? I have tried this and no relief at all!!! Just wanted to know if anyone else has ever had this problem with the infusions and if anyone has any advise for me. I have also noticed the Remicade works very very well other than this problem but I only have relief for a few weeks and all my symptoms start up again.....severe stomach pain, severely loose bms, and spending more time in the bathroom than anywhere else. I have mentioned this to my GI and he doesn't do anything. I'm to the point now where I am looking for a new dr that is going to actually act as tho they care. I would appreciate any and all feedback. Thanks Everyone!!!!
 
Sorry you are going through all of this! I am surprised you aren't being taken seriously! When does the reaction start? Even at the clinic they are very careful to watch for reactions. I have an idea...you can call the clinic/biological people and tell them what is happening if it doesn't star until after you have left the clinic.

Do you have an appointment with your GI as a follow up? Mine saw me after my three loading doses and asked me all about symptoms of crohn's etc.

Hope you are feeling better soon!
 
Oh and I felt the same thing as you, symptoms coming back, but then I was pretty good for eight weeks, and the felt crappy for a couple weeks as my infusion was delayed. But feeling a lot better since! (Except for pesky butt pain-feels like abscess going to flare up- first road trip tomorrow since s I was diagnosed six months ago!)
 
I start feeling like my blood is boiling and begin to look like a lobster the very next day after my infusion. I never thought of calling the Hospital that gave me the infusion. I will do that ASAP!!! Thanks so much. I hope your road trip goes well and glad you are feeling better. I hope to get feeling better myself even if I have to find another dr that does take my symptoms seriously
 
Hi all. Had my third infusion on tuesday. Last night broke out in hives on hands feet and butt. Called my
Gi today let her know whats going on. She is having me take otc benadryl with has seemed to help. Most of the hives have gone but hands and a spot on butt still itch. Furtsrating remi has worked so well. No symptoms for the past month. I was always premed before benadryl with no prob. My gi said she will increase the benadryl dose at the time of my next infusion. I heard the reaction could be worse next time. Next infusion in 8wks. Any advice? Thanks
 
hi rhemus,
at far as I know (from what I read on forums), if the remicade is working and you are having minor reactions like skin problems or headaches, they will treat the reactions rather than take you of the remicade.
SO, If remicade has put you into remission after everything else has failed a rash is a minor inconvenience compared to the alternative. ive heard the same for major reactions too. check out the rest of the treatment page.
I hope it doesn't get any worse for you next time.
ju
 
Thanks sick. I guess you right. This is the first time I have had anything like this before. It just scared me a bit. Still have a couple spots that are red and itchy but over all not to bad, I was able to sleep through it last night.
 
have yourself a bath with baking soda in it. should take away the itch. or theres a liquid Benadryl type stuff mostly used for kids but adults can use it too. it works far quicker.
ju
 
sickinlk said:
have yourself a bath with baking soda in it. should take away the itch. or theres a liquid Benadryl type stuff mostly used for kids but adults can use it too. it works far quicker.
ju
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Thanks for the advice. My doc pecribed hydroxyzine 25mg which has knocked most of it down. I at least I don't feel like I need to roll around on sandpaper now:ylol: over all much better. Have a happy easter.
 
spinnychick said:
have you ever used Imuran with the remicade? anyone?
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I am on both right now with pretty good results. I just have to be that much more careful about infection. I did just get four cold sores at once, but so far that is the only reaction in almost a year of taking both. Good luck to you!!
 
xX_LittleMissValentine_Xx said:
I have a question.
You know how you can have a delayed reaction after the infusion?
Is this like with food reactions when exercise can kinda bring it on/make it worse?
Having a reaction is my only fear about it at the moment. I try to go to the gym twice a week so when I go next week it will be two days after my first infusion.
Just wondered if anyone had any experience for this.
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The delayed reaction I get is the flu-like aches and headaches. I haven't had any pattern of anything in particular bringing it on? How did it go for you?
 
JudithC said:
I take my own Tylenol and non-drowsy Claritin. Works well for me.
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I also take Tylenol and Allegra before and then get the Benedryl and hydrocortisone in the IV before the infusion. They are mostly trying to avoid the headaches, flashes, and aches. So far so good, except for the cold sores this time.
 
Which leads me to a question: have any of you gotten cold sores after Remicade? I am on Imuran too, so I figured it was a tanking immune system thing. Any thoughts?
 
Jenny, I get and have the aches all the time now. GI just nods his head when I mention it. Does the hydrocortisone help with that at all? By the way, who is your GI? Do you mind sharing that info? I think I want a second opinion, but only if I don't have do to any invasive tests.
 
The hydrocortisone does help, but so does a hefty dose of Vitamin D3. And I mean hefty. I have been taking 5000 IU daily and when I recently got my levels checked I was a very low normal. Sometimes I still get a little achy, but not nearly as bad as in the past.
 
Jenny thanks. I am also taking 5000 IU a day, and it has helped a bit. My GI also increased my Remi dose and that helped too. Bloods always show low normal on almost all my counts including the Bs. And I do take plenty of vitamins also.
 
And, for some Gawd-awful reason, I am GAINING weight, which is not a good thing for this old chubby+ lady, not at all. Is anyone else gaining unwanted weight? Cause? I am really soooo hungry all the time.
 
Hey Judy! I'm in the same boat... can't seem to stop gaining weight! I know I shouldnt complain given that typically we have trouble keeping weight on... but this chubby girl needs it gone! Lol
 
Oh thank goodness someone else is doing it too. I'm sorry it's happening to you too, but at least I know that I'm not going bonkers....lol. We are on the same meds too, Remi and Aza. What is Tect? I do not take iron though, and have gone beyond the B-12 shots, at least for now.
 
Heres a question for everyone. .. I read that remicade can encourage strictures due to scar tissue... over the last couple months I've had a lot of trouble even having a BM, and can sometimes nkt go for like 3 days.. this weekend I've travelled to the states and it seems to be even worse... going on 5 days with only one small BM. Lots of cramping and pain, bloated feeling, nausea, etc. When I last saw my GI she thought it might just be from my medications and suggested mirolax... been taking that but no help :(. Wondering if it might be a partial obstruction? Not sure as I've never had one! Back in canada tonight, and figure I will call my GI tomorrow. .. but it sure is not comfortable!!!
Anyone else experience anything similar on remi?! My next infusion is on friday
 
The tecta is for nausea and acid reflux. It has helped a lot!!! I thought the weight was from prednisone originally.... but I've been off that a few months now!
 
It took me several months to lose the Prednisone weight. But now I'm gaining it back slowly WITHOUT the pred. If I was 60 years younger I would probably have a temper tantrum.
 
thisisme said:
Heres a question for everyone. .. I read that remicade can encourage strictures due to scar tissue... over the last couple months I've had a lot of trouble even having a BM, and can sometimes nkt go for like 3 days.. this weekend I've travelled to the states and it seems to be even worse... going on 5 days with only one small BM. Lots of cramping and pain, bloated feeling, nausea, etc. When I last saw my GI she thought it might just be from my medications and suggested mirolax... been taking that but no help :(. Wondering if it might be a partial obstruction? Not sure as I've never had one! Back in canada tonight, and figure I will call my GI tomorrow. .. but it sure is not comfortable!!!
Anyone else experience anything similar on remi?! My next infusion is on friday
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That sounds a lot like a possible partial obstruction. I have experienced this type of issue more often than any other when it comes to bowel movements and such. I have always been more likely to be constipated and not go for days and then when I do go, it resembles rabbit poo. I think you are on the right track to get in touch with your GI as soon as you get back. Don't take no for an answer - if she brushes you off, you can always go to the ER for the pain, etc. I have been hospitalized three times for partial obstruction and each time, I had to go through the ER. Does this help?
 
Thanks! That does help. I am going to call my GI first thing tomorrow morning, and if all fails I will head to my family doctors clinic (he's connected with our hospital here). Hoping I can get something to help!
 
Hi everyone.
Just had my second infusion.
All seemed to go well. Got my third in four weeks now.
She said after my third one they will put it through over an hour and I don't have to wait after, whereas for these first three its over two hours and then I had to wait two hours after. So I look forward to it getting quicker.
I think I have an appointment with the GI in a couple of weeks.
They said my blood results were perfect, but some things flagged up in my urine sample so they sent it for analysis. I feel fine and don't have a temperature but they said it could be an infection which I'm not showing symptoms of.
So I can call up for the results of those in a few days.
 
xX_LittleMissValentine_Xx said:
Hi everyone.
Just had my second infusion.
All seemed to go well. Got my third in four weeks now.
She said after my third one they will put it through over an hour and I don't have to wait after, whereas for these first three its over two hours and then I had to wait two hours after. So I look forward to it getting quicker.
I think I have an appointment with the GI in a couple of weeks.
They said my blood results were perfect, but some things flagged up in my urine sample so they sent it for analysis. I feel fine and don't have a temperature but they said it could be an infection which I'm not showing symptoms of.
So I can call up for the results of those in a few days.
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I always sign a waiver so I don't have to stick around after the infusion. Good luck with the test results, hope all is well.
 
My daughter is due for her 8th treatment this Friday. It has taken a long time, and we doubled the dose last treatment. She has been symptom free for almost two weeks!! yeah!!!

Thisisme: About three weeks ago, she was also bloated, holding on to her poo for days, and had discomfort. Looking back, it could have been a flu, change in diet or the end of a flare.. we had also added Acidophillus which can cause bloating for a few days. But I believe it has really helped her along with the Remicade, Asacol and Cortifoam.

LittlemissValentine: so glad your infusions are going well. Hopefully your test results will come back good.
 
Thanks Hope.. I think you might be right!
After a lot of running around this morning and calls I was able to get in to see my GP (as my GI was on call all day and unavailable). Had a set of abdominal xrays which all came back normal...
Now, everything is turning around, and it seems like im going to be sitting on the ceramic throne all night with "D". Which is very abnormal for me. Wondering if perhaps this was a flare all along? Ive never really had D as a symptom of my Crohn's before, but the pain im having is very familiar... *sigh*

Here's hoping Friday's course of Remi gets me outta my slump! lol

And... LittleMissValentine -- It was same with me! First three they wanted me to stay the full 4 hours, but now that I am in my maintenance doses, they let me leave with signing a waiver. I kinda enjoyed that extra little while sitting in the comfy chair and snoozing though!
 
Just had my third infusion yesterday. I was feeling absolutely fantastic until about 3 weeks after the 2nd infusion. I started to get a little bit worse after that, but nothing too drastic (very slight loss of appetite, BMs increasing from 1 a day to 2, then 3, and a small amount of blood again). However from literally the moment they started to infuse me yesterday I have been feeling great again :ybiggrin: Only had one BM again yesterday, so it is amazing how quickly it works really. I have also put on about 2kg in weight since the 2nd infusion as well (for a total of 4kg since the 1st dose), which I think is a good sign as I have stopped taking prednisolone completely now (been off nearly a month now). I am hoping the slight wearing off before this dose is just due to the fact that I am still doing the loading doses and not due to me building resistance already, we will see what happens now that I am on an 8 week schedule anyway.

Only problem is I still have mouth ulcers. :voodoo: I have successfully managed to shake off the massive one on my inside top lip, but there is still a big one on my bottom lip causing quite a bit of swelling (although it is better than it was). Also still got some on my tongue but they aren't really painful. Will see what my GI says when I see him soon. I'm thinking low iron could be a cause, some of my recent blood tests have shown I was getting close to being anaemic, but they didn't seem too concerned when I was at the hospital yesterday lol.
 
Was just told today that I have a lump in both breasts (in the same location) and that they think it might be an infection. I was given amoxicillin for 7 days to see if it helps. My lymph nodes in my armpits are also swollen. GP says it may be related to Remicade as I'm not breastfeeding (never had any kids or been pregnant) and don't have any cuts anywhere. Since my Rheumatologist prescribed Remicade I have to give him a call to get more information. Hopefully I'll be able to talk to him before my next infusion on the 22nd this month.

Anyone else have this issue before? Can't say I'm happy about it and am pretty confused.
 
Jennifer, sending hugs and support your way.
Is there any redness or pain?

I did get breast infections when nursing, but anyone can get them.
Let us know what the doctors say.
 
I reread your post and changed my post - lol, sorry.
I was just reading about tissue infections in the breasts. It would explain the swollen lymph nodes too.

I hope the antibiotic works its magic!!!.
 
Is it common to get an infection in both breasts? From what I read is that its usually just one. Actually didn't see any mention of both breasts being affected.
 
Not sure. It will be good to see a response from the antibiotics.

Do you ever take probiotics too? Or a milk kefir? It could help balance out the flora. You just take them at a different time than the antibiotics. (I am sure you know all about that---lol )
 
Yes, I do indeed. :p Should have bought some today while I was out but I didn't think about it. Was planning on starting to take them again anyway. Thanks for reminding me. :)
 
Jennifer said:
Yes, I do indeed. :p Should have bought some today while I was out but I didn't think about it. Was planning on starting to take them again anyway. Thanks for reminding me. :)
Click to expand...

Jennifer, god I hope its nothing serious. I have 2 kids and fed both of them and had a lot of breast pain after. my GP told me to take evening primrose oil and it really helped. sorry your going through this. it must be so worrying.
every little thing I get I think worse case scenario because of being on remicade.
like right now I have glue ear(unheard of in adults) and a persistent sore throat and swollen lymph nodes that come and go.
im praying for you that's it something easily resolved.
ju
 
I'm being taken off of Remicade. Was hoping to ride the Remicade train for as long as possible but I guess this is my stop. :p I'm seeing my Rheumy tomorrow morning to discuss my options.
 
Its causing more infections just like Humira did. I have an infection in each breast which is supposed to be common with breast feeding but I've never had kids.
 

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