Remicade Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Glad everything went well Alison. I'm usually in and out in 3 1/2 hours, and I take my own premeds at home just before I leave for the hospital. Been on Remi for a bit more than a year now, and was worried that it wasn't working, but a hike in the dosage fixed things and I think I'm ok again. Good luck with it all.
 
hi Alison and Judith.
I only had to stay for the 4 hrs the 1st few infusions. after that they increase the speed it goes into you once you've shown you can tolerate it. mine takes an hour going in and I have to stay for an hour after.
ju
 
Alec had his second infusion last Monday. He felt so good afterwards he decided to go to his baseball game straight from the hospital. He started at third base and then had to pitch 3 innings when the starting pitcher couldn't get through the second inning. We thought he would just DH but he told his coach he was fine ... needless to say, so far so good.
 
I had Remi on Feb 18, and again today, both times I had bad reactions, 4 hours after I started and currently having chest pains, shortness of breathe, and stomach cramping. I went to the ER the last time but am trying not to go this time, just took Benadryl and may take a vicodin for the pain.

I've been going for 10 yrs and try to stay close to the 8 week point but been swamped with work/life and now I'm another month past due. Is this the reason or is it time to ry something else, It has kept me out of the hospital despite a few ER visits.

See my GI in July.. I'm 44 have had Crohns since I was 12, no major surgeries.
 
melissaconstantine If the infusions were spaced that far apart there is a possibility that your body has built up antibodies which can create a reaction. Before Feb 18 were they spaced consistently?

There have been several studies that show episodic use of Remicade led to antibodies being created more often than consistent use, I believe.
 
I was really good about going every 8 weeks, I had one around Thanksgiving, then Feb 18 and then yesterday, I need to make time and go do it, and not let work or life get in the way!!! I will see my GI early July and see if we should try it one more time, I have it in my calendar in July when I should go again. I feel better today but some minor joint pain in my hip!! Now off to enjoy the day at a festival, need to get out and enjoy the weather. Thanks for all your thoughts!!
 
Hi i have been told that it will take 2 hours everytime i go. I asked before I started if I tolerated it would I be able to increase time infusion takes and was told no. I have infusions in the endoscopy department and there is a letter stating every infliximab infusion you have you must stay at least 2 hours after infusion. It states if you dont agree to this then they will refuse the infusion. So looks like for me I will be 4 hours everytime. I am noticing things getting better after just one infusion. I am not bothered about the time if its going to keep me well.

Alison
 
I've never heard of waiting 2 hrs after, I usually will stay 30min max and it depends on which nurse is taking care of me, I get it done at the hospital for the last 10yrs, have a good relationship with nurses. This time the Infusion went 3 hrs instead of 2, I was there 90min b4 waiting on iv therapy to get an iv in, my veins are horrible.. Then wait for meds to be made up..
 
alisonwilkinson said:
Hi i have been told that it will take 2 hours everytime i go. I asked before I started if I tolerated it would I be able to increase time infusion takes and was told no. I have infusions in the endoscopy department and there is a letter stating every infliximab infusion you have you must stay at least 2 hours after infusion. It states if you dont agree to this then they will refuse the infusion. So looks like for me I will be 4 hours everytime. I am noticing things getting better after just one infusion. I am not bothered about the time if its going to keep me well.

Alison
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lots of different centres/hospitals will have different protocols. yours are just being super careful
ju
 
well, less than two weeks since Alec's second infusion and he woke up nauseas and had 2 BM's already this morning. Also has bleeding from a rash on his bottom. He played baseball last night and felt so good, how does it go so bad so fast? So sad right now.
 
parentnj, it can take up to six or more infusions to see a full difference. I know it can be disconserting and deflating to see issues so soon after the Remicade infusion but I hope that his complete response will come with more infusions.

Even after the loading doses they may have to tweak the schedule or up the dose to get full efficacy from it. Hang in there.

C has never had nausea with his remicade treatments but a day or two after some infusions he would have loose bms for a day then all would reset and be normal til the next infusion. One of the other parents, MLP, said her son experienced this as well when he was on Remicade.

HUGS.
 
Alec's Crohn's symptoms usually start with nausea ... that is what is scary for us. We are waiting to hear back from Alec's doctor to see what he wants to do. I know he is on the lowest remicade dose and its only his second loading infusion so we need to have patience ... knowing its more than two weeks until his next dose doesnt make it any easier.
 
I know what you mean, once you make a difficult decision about the medications you then have the periods of worry about their efficacy. It is so much stress to watch your little one deal with all of the treatments and symptoms of the disease.

We have a fecal calprotectin coming up and I so want to see really good numbers, such a waiting game!
 
well I managed to last the 8 weeks without any real problems...I still have a few symptoms such as occasional blood and one mouth ulcer which still wont heal lol. Had my 4th infusion the other day, will be interesting to see what happens this time. The infusion before I didn't have any symptoms for 3 weeks after (except the ulcer), then it went a bit downhill after that.
 
I've been on remicade for a year now and it has been working great up until 2 infusions ago. I had a flare up towards the end of my cycle, then during this last cycle, I had a flare up in the middle of my cycle. Doc said he may increase the dosage or go in more frequently for infusions.
 
My Dr. did both Amy. Increased the dosage and now I'm going every 5 weeks instead of 6. So far so good, working much better. Good luck with it.
 
Hi i had a blip last Thursday thought I might be having a reaction to the remicade headaches,dizziness and my stool had gone from solid to watery. I rang IBD nurse and she said she would speak to the doctor could be a reaction. I put it down to a 24 hour bug I woke up on Friday fine. I told the nurse that I was fine when she called me on Friday but she said she will ring me on Monday and keep an eye on me b4 my next infusion on Friday. She said if i needed to be seen then they would see me b4 i go for my infusion. I dont think i need to be seen. I am feeliing good and long may it last.

Alison
 
Alec's little flare resolved itself ... he felt much better by late afternoon on Friday and was feeling really good this weekend. No idea what triggered it other than maybe too much Gatorade which he drinks to keeps his electrolytes up when playing baseball. fingers crossed it has passed.
 
My hubby started to flare 4 weeks after his last infusion. Next infusion is June 28th. Has anyone had the doc move up infusion to help get the flare under control? They put him back on prednisone Friday, but it hasn't helped yet. Pudding/jello/Popsicles going right through him along with a toilet bowl full of blood. Now on top of it, he has quarter size painful lumps all over that seem to be large pimples????!!!??? Fever is gone now though. Anyone had such a rash?
 
I never had a rash that bad, but I have had my infusions put closer together by one week, and increased the dosage. It has worked pretty well for me so far, although joint pain has increased for some reason. I hope your husband feels better very soon. Pred usually works pretty fast. If it continues for another day or two I would go to ER. Good luck.
 
JudithC said:
I never had a rash that bad, but I have had my infusions put closer together by one week, and increased the dosage. It has worked pretty well for me so far, although joint pain has increased for some reason. I hope your husband feels better very soon. Pred usually works pretty fast. If it continues for another day or two I would go to ER. Good luck.
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Thanks Judy!
Gastro told him to make an appt with his primary care doc. to look at bumps. Feel so bad for him, as if the crohns isn't bad enough. Now these painful bumps.
 
I started my infusions and had my second one last week. After the first one, I felt better pretty much immediately, and didn't even feel tired afterward. I didn't want to report anything here though because I was afraid of jinxing it. My second infusion went well too, but I did feel pretty wiped out for 3 days afterward - small price to pay. I still was not really wanting to post anything again because I'm still waiting for the other shoe to drop. But I figured I would share that everything has gone better than I've expected so far. My arthritis has even been better, this is the best it's been in 2 years. But again, I feel like I shouldn't say anything or it will stop working.

I'm sure this new anxiety I have is probably not the best for me. I'm trying to tell myself even if I only get a few good weeks, it's better than nothing.

Does anyone else feel this way?
 
Alberta_sweetie said:
Hi, so I have tried imuran, 6-mp and both have messed up my liver so now once my liver enzymes go back down my GI wants to start remicade. I'm kind of nervous because I have not had very good luck with any drug I have tried for my Crohn's. what kind of side effects are to be expected? And what do you end up feeling like especially after the first dose?
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I just had my 3rd and final loading dose on friday so I started Remicade 6 weeks ago... I didn't really notice anything except a general tiredness the next day. Something that was less noticeable on my second and third infusions. Hopefully you have a good experience and can just relax and enjoy tea and cookies during your infusion.
 
hi all, looks like im heading for a double dose next week and its being brought forward to every 6 wks. please let it work. I need this!
ju
 
Those painful bumps can be a skin infection... they can also be a side effect of Pentasa if he is on that.

Remicade should be administered on a on an interval of 4-8 weeks (it is not recommended to administer shorter than 4 week intervals). If he felt good for 4 weeks, my suggestion would be to go to a 4 week interval for a while and work with your doctor to try and stretch out the interval slowly over time. It is not recommended that you ever go on an interval more than 10 weeks. After 10 weeks your chances for allergy and resistance go up a ton.

Source: My doctor was involved in the pioneering of Remicade. I have been on remicade for 12 years and he is a very instruction-oriented doctor.

I would recommend trying a 4 week interval before going double dose.... also if you do a double dose... it is crucial that you premedicate with Benadryl or Zyrtec. that will greatly reduce your chances of an allergic reaction.
 
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I'm on an 8 week protocol and usually get worse at about the 5 week mark and wanted my doc to shorten the time span between doses but he tried putting me on Imuran instead.
 
Hi just been for my second infliximab today. I am doing really well on 300mg. I feel absolutely fine no side effects whatsoever. I am so happy.

Alison
 
@Alison, we're all praying for a long remission for you that is full of awesome!

@Spinny, keep up the fight. Glad you are being proactive about it
 
hi all. had my first double dose today. im am well and truly knackered. zzzzzzzzzzzzzzzzzzzzzzz! no reaction yay. fingers crossed it works now.
ju
 
Ugh! Hubby still waiting for an antibody test to come back before being administered a double dose of his rem. Anyone ever have this test done? They had to have the blood sample sent to California??? Really hoping his body isn't fighting the rem. as he is pretty sick right now...
Doc said that if the antibody test comes back not to his favor, we will need to start Humira. Wondering what everyones experience is with Humira? Hope it works fast!! Poor guy is down to 180lbs. from 247lbs. in January. Crohns Disease (BOO)!!!!!!
 
We had to do the antibodies test back in February. We had already upped the dose, shortened the schedule and added methotrexate but he had a weird flare and they ran the test to make sure he wasn't creating antibodies, he wasn't.
 
Clash said:
We had to do the antibodies test back in February. We had already upped the dose, shortened the schedule and added methotrexate but he had a weird flare and they ran the test to make sure he wasn't creating antibodies, he wasn't.
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Really?? We've been pushing for the double dose as my hubby is miserable, but they absolutely wouldn't do the double dose before doing the test?? Wondering if it could be since only received 3 doses and isnt due for the fourth until 6/28.
Curious what your weird symptoms were that made them want to do the test?
 
Clash, can I ask why they added methotrexate? My Remi has been upped and schedule shortened too, which has helped tummy and poops, but my whole body aches especially knees and feet. I'm trying glucosamine/condroitin OTC stuff, but only started this week. Need to find something that will help with joint/muscle pain. My infusion is due on Thursday though so hoping I'll feel better shortly after that.
 
LISATHEGIRLS, it probably is because he is so early in on the doses with little response. C had been on remicade close to a year.

We thought he was having a flare triggered by some sinus issues, he tends toward constipation not D, but he went something like 6 days w/o a bm. GI nurse said to bring him to ER and she'd have GI waiting. He was also experiencing severe joint pain(he does have joint pain when flaring). The constipation had actually been caused by a cough syrup he had been px'ed with pain meds in it. GI went ahead though and did antibodies tests as well as an MRE and colonoscopy, he only had a little bit of low level inflammation.
 
JudithC, at the time we added MTX it was because the upped dose and shortened schedule only took care of his symptoms for about four weeks from infusion. Also, the joint pain kind of hung around that whole time.

So we added MTX and I have to say I really think(although it took a few months) it has really done the job. C doesn't have any symptoms, including the joint pain, and we just had a fecal calprotectin stool test and his level was 48!! Before MTX, it was 1700(we added MTX then), when the colonoscopy/MRE/antibodies were done his fecal calprotectin was at 300. So really great improvement!
 
Clash said:
It probably is because he is so early in on the doses. C had been on remicade close to a year.

We thought he was having a flare triggered by some sinus issues, he tends toward constipation not D, but he went something like 6 days w/o a bm. GI nurse said to bring him to ER and she'd have GI waiting. He was also experiencing severe joint pain(he does have joint pain when flaring). The constipation had actually been caused by a cough syrup he had been px'ed with pain meds in it. GI went ahead though and did antibodies tests as well as an MRE and colonoscopy, he only had a little bit of low level inflammation.
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Poor guy!! Glad it was just the cough syrup!! Complete opposite symptoms here. My hubby had a sigmoid colonoscopy (not sure on spelling) last week while in the hospital and we were told he was having an acute flare along with chronic anemia. Wondering if the remi was actually working or was being masked by the steroids they tapered him off of and a week after his last dose he started having trouble again. Hoping the remi works, seems like he had several good weeks and felt so much better right after the infusions. Thought it was a miracle drug, until now. :(
 
It was probably the combo of Remicade and Pred, the pred was kicking butt and the remi gave extra umphhh but when you tapered completely off the Pred the Remi hadn't had enough time to take over, it can take up to 4 or 5 infusions for it to kick in I think. Anyway, I hope it isn't that he has antibodies and things can get evened out quickly!!
 
elfgibson said:
went to family doc. today and liver enzymes elevated anyone else have that while on Remicade?
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yes me. it happened in jan and continued till june nearly. when I started 6mp they came down AGAIN. STRANGE. what numbers were they at. alt, ggt, ast?
ju
 
I'll have to look when I get home, but since this last remicade dose I have been having some nausea did you have that also?:yrolleyes:
 
no, I wanted the dosage and/or frequency increased but he put me on Imuran instead, but I am no longer on that as I wasn't comfortable with that drug. The nausea just comes usually when I eat.
 
I don't get nausea from remicade and im on 10mg/kg at 6 wk intervals. feel kinda good this past wk. I think it may just be working. woop woop.
 
I wasn't allowed my infliximab yesterday because I have a bad cold :(

I was then sent home from work and I was too tired to tell you guys about it on here. I'm still not feeling that good with my cold, but I think a bit better. Hopefully I will get better and will be allowed the infusion on Friday.
 
Hi! I will be receiving my first loading dose on Friday and I couldn't be more excited! I've been on Prednisone for 9 months now and can't wait to get off the stuff and get my life back!
A question though, I know that you can't receive a dose if you are on antibiotics. I woke up this morning with a cold and I'm worried I won't be able to get started! Any thoughts?
 
xX_LittleMissValentine_Xx said:
I wasn't allowed my infliximab yesterday because I have a bad cold :(

I was then sent home from work and I was too tired to tell you guys about it on here. I'm still not feeling that good with my cold, but I think a bit better. Hopefully I will get better and will be allowed the infusion on Friday.
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How bad of a cold? I've got a bit of a sore throat and a bit of pst nasal drip. What are the risks of being dosed while sick with a cold??
 
They give me 30 mg of Prevacid and it works great, I take a few days after as well. I developed antibodies to Remicade but they were knocked out by adding Methotrexate.
 
Hi again,
Can anyone tell me why they won't infuse if you have a cold? I think I'm getting sick and I'm supposed to get my first loading dose on Friday. I really don't want to post pone this if I don't have too.
 
Angie's Mom said:
Hi again,
Can anyone tell me why they won't infuse if you have a cold? I think I'm getting sick and I'm supposed to get my first loading dose on Friday. I really don't want to post pone this if I don't have too.
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if you have an active infection working on you they will not give you the infusion. if its just a cold they will go ahead. are you having your labs done beforehand? the labs will show up anything amiss.
ju
 
Its because its quite a heavy cold, with a sore throat. They said that if its just sniffles you can go ahead. Also my crohn's is OK so not too much of a risk leaving it a few days.

I'm on the mend so should be good to go on Friday!
 
sickinlk said:
if you have an active infection working on you they will not give you the infusion. if its just a cold they will go ahead. are you having your labs done beforehand? the labs will show up anything amiss.

They haven't sent me for any labs as of yet, I'm kind of thinking they don't have any plans too either.

I'm pretty sure it's just a mild cold, so with any luck I'll be able to proceed as scheduled!
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well if its you first loading dose you should definitely have lab work done.
how will they know if anything is wrong if they don't know what's normal for you. i'd be asking about it IMO.
what does every1 else think.
 
Had my infusion Tuesday and got quite sick Tues night, bloody diarrhea, vomiting, etc, lost a pound. Anyone else have this immediately after an infusion?

Also, my bp is quite low 90 over 60 ... anyone else suffering from low bp or know what it's from?
 
Hi Spinnychick....I've never had that kind of reaction after an infusion. Hope you called your Dr. to let him know. Low bp might be a result of this reaction, just my opinion non medical of course. I'm hoping you're feeling better now. Hugs.
Judy
 
sickinlk said:
well if its you first loading dose you should definitely have lab work done.
how will they know if anything is wrong if they don't know what's normal for you. i'd be asking about it IMO.
what does every1 else think.
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Thanks, I totally agree that blood work should be done. Sadly over the last 9 months that I've been ill, ive felt as though my treatment has been.... A little lacking. I've only had one blood test that was ordered by my GP and not my GI. It revealed a several low vitamin D level.

I'm going to contact my remicade nurse to inquire about having some labs done.

Thanks.
 
We must learn to be our own advocates. Dr. nor his office have told me very much. What I learned I did through this site and my own research. Thank you everyone for your support and understanding.
 
Very true about getting more information digging around ourselves than from our doctors. I've learned way more about this disease through self research and these forums than from any doctor's office for sure. :cheerleader:
 
Low BP can be a reaction. It is also possible that you were sick with something without symptoms prior to treatment and the remicade immunomodulating effects caused you to get really sick. Over the twelve years I've been on this stuff I've gotten nasty illnesses shortly after a few times.

The usual symptoms for reactions are usually more along the lines severe body aches, difficulty breathing, skin rashes, etc.

Are you still sick now?

Excerpt from the drug company's documentation:
Some patients have had allergic reactions to REMICADE. Some of
these reactions were severe. These reactions can happen while
you are getting your REMICADE treatment or shortly afterward.
Your doctor may need to stop or pause your treatment with
REMICADE and may give you medicines to treat the allergic
reaction. Signs of an allergic reaction can include:
• hives (red,raised, itchy patches of skin)
• difficulty breathing
• chest pain
• high or low blood pressure
• fever
• chills
Some patients treated with REMICADE have had delayed allergic
reactions. The delayed reactions occurred 3 to 12 days after
receiving treatment with REMICADE. Tell your doctor right away
if you have any of these signs of delayed allergic reaction to
REMICADE:
• fever
• rash
• headache
• sore throat
• muscle or joint pain
• swelling of the face and hands
• difficulty swallowing
 
Thanks for all the good info, truly appreciated. My bp was low before, during and after infusion and still is. I've googled and it says low bp can be a result of malnutrition and dehydration which I'm sure I have both. I'm losing weight again. Never an ending battle with this.
 
Hey everyone.

Had my fourth infusion today. They put it through over an hour and then I went straight away.

Me and mum went into town, I was feeling fine and then we went to pizza hut, I ate a lot and in the next shop I went to I suddenly felt strange. Light headed, an odd sensation in my chest and also felt like I couldn't breath deep enough to get enough air in. I sat down and once I had rested I felt a lot better...

Do you think this was due to doing too much after the infusion? low blood pressure? Or just having a big meal and blood rushing to my stomach? Would appreciate the input. Anything like this happened to others?
 
spinnychick said:
Had my infusion Tuesday and got quite sick Tues night, bloody diarrhea, vomiting, etc, lost a pound. Anyone else have this immediately after an infusion?

Also, my bp is quite low 90 over 60 ... anyone else suffering from low bp or know what it's from?
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I only had low bp once during my infusion. Bp 85 oner 50. My nurse had me drink lots of water and increased the flow on the non remicade bag. So I'm thinking you are right about being dehydrated. That is my only reaction in over 10 years of Remicade.
 
xX_LittleMissValentine_Xx said:
Hey everyone.

Had my fourth infusion today. They put it through over an hour and then I went straight away.

Me and mum went into town, I was feeling fine and then we went to pizza hut, I ate a lot and in the next shop I went to I suddenly felt strange. Light headed, an odd sensation in my chest and also felt like I couldn't breath deep enough to get enough air in. I sat down and once I had rested I felt a lot better...

Do you think this was due to doing too much after the infusion? low blood pressure? Or just having a big meal and blood rushing to my stomach? Would appreciate the input. Anything like this happened to others?
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I had a question about your infusion. Did it only take one hour? If so that maybe what caused what sounds like a reaction. If I understand it right that is not following Remicade infusion protocol. That can cause problems.
 
:yfrown: They infused you waaay too fast if they did it in an hour-that's not even enough time for the premeds to kick in. You should have your premeds, then 20 minutes of saline first, and then at a minimum the Remicade should be infused for two hours. After that I always have a five minute flush.

The feeling in your chest is from the infusion running too fast, I had the same thing happen to me. Please, talk to your GI, he can order exact specifics as to how it should be infused. Also, it's a good idea to eat lightly and at least for me, to lie down for about an hour afterward, even if I feel OK.

Drink plenty of liquids and if you feel worse, head to the doc asap. Feel better soon!
 
I don't even have any pre meds. For my first three infusions it went in over two hours and then I had to wait two hours afterwards.

They said from then on I can have it in over an hour and go straight away. I think it is their normal procedure since I have seen other people do the same.

I have an appointment with my GI on 15th July so I will ask him about it then.

I feel fine now after a nice sleep :)
 
My daughter has infliximab and they always pre medicate with hydrocortisone and piriton, then wait 30 mins then her infusion goes through really slowly, it takes more than 2 hours and then a flush for about 20 mins. We then have to wait 2 hours with obs every 30 mins.
I have a friend who also has infliximab. He is an adult, never gets premedicated and last time also had it rushed through in one hour. He had very scary chest pains over the next few days. It amazes me why the treatment is so different from child to adult.
 
My son gets his Remicade infusions at his Ped GI group's IV lab. He is premedicated with, iv benedryl, then infusion takes about 2 hours then last 30 minutes is the flush then we go.

It is interesting to see all the different protocols followed.
 
Hi i am having problems again. I have had 2 infusions and I was ready for my third infusion at 2 and a half weeks instead of 4 weeks. I have rang the ibd nurse today and she wants me to have the fecal calprotectin tested on Friday when I go for my next infusion. She is going to come and see me on friday. She then wants me to have one done in 10 days time and then she said she can judge what dosage I should be on. Im only on 300mg at the moment. She said that some patients are switched to Humira when only lasting a couple of weeks but dont want to mess with any other medication because of my liver. I just hope it works. Im out of options immunosuppressants I am allergic to. Thanks for reading.

Alison

Diagnosed with crohns disease 1999
Medication been on Azathioprine,6mp,tamcrolimus,pentasa, budesonide,prednisolone, Elemental Diet 028, Nutrison

Medication on: Remicade 5mg/kg
 
Hi all, I received my first dose of remicade on Friday. I spoke with my GI doctor and he told me that a lot of people find relief after the first dose. While I didn't expect instant relief, I'm just wondering if anyone could share with me approximately how long it took before they started to see an improvement.

I've had no side effects so far, but it sort of sounds like side effects or reactions could arise on your first dose or 51st dose. I'm told this will change my life, I'm just waiting for a small indicator it's working!
 
Hi Angie's Mom. It is different with all of us. I felt a difference after my 3rd dose and it was wonderful. My tummy finally 'deflated', the D stopped and I even had a little more energy. I've had my Remi for more than a year now, and had it increased, and haven't had any side effects. I hope it all goes well for you.
 
katiesue1506 said:
Be careful with the piercings... I have my belly button pierced (got it done at 16 before I was even diagnosed) and if your body doesnt respond well to foreign metals, you will have an issue. I was a normal healthy girl and it got infected for about four or five months... it finally healed up and I don't even remember I have it now, but I knew I had a nickel allergy and I went and did it anyhow. Being on Remicade, I can only imagine, would make it wayyy worse.
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Out of curiosity, why do you feel being on Remicade would make the nickel allergy worse? Thanks! :)
 
Hi i have got to go for my third infusion tomorrow. I am really ready. I just hope that this one will be more effective than the second one. Roll on putting me on a higher dosage.

Alison
 
Hi just been for my third infusion. No bm so far. I have seen my consultant today and she said the ibd nurse will ring on Monday about starting me on Methotrexate. She said you look better than you did when I last saw you but you couldnt of looked any worse.

Alison
 
Does anyone have bloating after Remicade? Big hard belly the last few times. Maybe it is just a coincidence that it happened at time, it does happen other times as we all know.
 
hope it sorts you out spinny. are you on a double dose aswel. I had mine doubled at 6 wk intervals recently. I think its working but i'm AFRAID to say it iykwim.
ju
 
Does anyone have bloating after Remicade? Big hard belly the last few times. Maybe it is just a coincidence that it happened at time, it does happen other times as we all know.


I have not had bloating but I do experience several other issues such as flu like symptoms, tiredness along with nausea.

I hope everything works out well for you.
 
In the midst of getting my infusion at this moment. I wish I could say everything is going well but I am a week later than usually and I generally feel crummy.

I really wish I could past this feeling.
 
I've been getting infliximab since 15th may, I honestly don't think it's working the way I expected, doctor promised me good results, so yet again I'm left wondering "yet another thing that doesn't work".
 
Sminted, you must give it time to work a bit. I was past my 3rd infusion before I noticed a difference. With some adjustments, it has worked very well for over a year now. Health is not perfect but much better than it was.
 
My 5th infusion is coming up, I honestly feel no better now than before I started, actually worse, because I'm eating more, and my bowel is noW my master :-( I'm taking azathioprine alongside infliximab which should help, but honestly medication never works for me like it should, tried basically all I could get my hands on and 10 years after I was diagnosed, I'm worse off now. Makes me wonder what's the f*cking point, I don't sleep because of the meds I take, up all the time thinking and thinking, I try to rest I'm up going to the toilet, lost touch with family and friends over this sh*tty disease pardon the pun, I'm alone most of the time, I'm thin and suffer from depression(severe) it's a sad thing to say but the only person who'd realise anything had happend to me would be my gastro nurse when I didn't show up to an appointment, my family never even phone/visit me, isolation is a b*tch.
 
Sminted said:
My 5th infusion is coming up, I honestly feel no better now than before I started, actually worse, because I'm eating more, and my bowel is noW my master :-( I'm taking azathioprine alongside infliximab which should help, but honestly medication never works for me like it should, tried basically all I could get my hands on and 10 years after I was diagnosed, I'm worse off now. Makes me wonder what's the f*cking point, I don't sleep because of the meds I take, up all the time thinking and thinking, I try to rest I'm up going to the toilet, lost touch with family and friends over this sh*tty disease pardon the pun, I'm alone most of the time, I'm thin and suffer from depression(severe) it's a sad thing to say but the only person who'd realise anything had happend to me would be my gastro nurse when I didn't show up to an appointment, my family never even phone/visit me, isolation is a b*tch.
Click to expand...

I have been on Remicade for nearly 5 years and I too feel like you do sometimes....What's the point?

Well, I was scheduled for my infusion last week but I had to change to today and boy did I seem to pay for putting it off a week. My point is, "Even though you may not think it's doing any good, the result may be unnoticeable until you really notice it."

I hope you feel better soon and that you know others feel your pain.
 
I think my last infusion is tomorrow- they want to do it till I can get in the tysabri club. I won't lie- totally looking forward to that Iv Benadryl and the sandwich they give me. After all the pre meds, that groggy thing is like manna. I bring food and choose the sandwich. I'm lame. I know.
 
What is the tysabri club?

Blacked out again tonight - guess I stood up too fast. Smashed my head on the breakfast bar and broke my fall with my tailbone. Pulled a chair down with me which gashed my leg. Anyone else get dizzy spells?
 
I get dizzy spells. They're switching me to tysabri, but its gonna take a bit and the remicade infusion is due....so ya know.
 

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