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Crohn's Disease Forum

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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.
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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.
 
Hi Everyone, I'm Juliet. :) I'm joining the Remicade club. I start my first infusion next week. Any tips on what I can expect with my initial loading doses? :)
 
Hi Juliet. :welcome:

They go really slow for your first infusion and check your vitals heaps to ensure you don't have a reaction. But if you don't react, the following infusions get quicker until it takes about 2 hours.
Personally, I find myself quite tired after the infusion - despite sitting in a comfy chair with a blanket, listening to music and sipping tea. :p

Don't expect to feel better immediately, most people find improvement after their 3rd-4th infusion. But best of luck, keep us updated!
 
Jordinary said:
Hi Juliet. :welcome:

They go really slow for your first infusion and check your vitals heaps to ensure you don't have a reaction. But if you don't react, the following infusions get quicker until it takes about 2 hours.
Personally, I find myself quite tired after the infusion - despite sitting in a comfy chair with a blanket, listening to music and sipping tea. :p

Don't expect to feel better immediately, most people find improvement after their 3rd-4th infusion. But best of luck, keep us updated!
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Thanks so much :) I suppose the tiredness after will be a bit like how I feel after my iron infusions too. I usually feel pretty exhausted and sleep for a day afterwards. I'm pretty scared for my first infusion, but I'm also hoping this will finally be the thing that works for me after years of failed drug attempts.
 
I completely freaked out about the first time but it really isn't that bad. The potential side effects are obviously something to be afraid of but if it works for you and you feel great, the benefits will outweigh the risk.

Fingers crossed for you that remicade is your miracle drug. :)
 
I'm set to have my 3rd infusion next week. I found that I had some relief after my first infusion and still more after the second. They check your blood pressure and temperature every half hour. How long it takes depends on if you have any pre medication.
Best of luck to you!
 
Hi all, I've just joined the club. I've been on Remicade since Sep '12. I was on Humira previously for over two years.

I have at present three complex fistulae (two setons in place) which my GI and Colorectal surgeon said might heal with the help of the Remicade.

Does anyone else in this club have a fistula/fistulae and that is why you are been treated with Remicade?

My next infusion (which is done every eight weeks) is on 13/8.
 
Does anyone seem to have pain in every joint in their body? It seems like my ankles, knees, hips, wrists, elbows, shoulders and back never stop hurting.

Am I just falling apart or what?
 
Hello all,

I am a newbie to this forum. Thought will share my experience as well. Had 3 initial infusions and took a break hoping that 6MP will kick in and that I may not need more. After waiting for almost 4 months with an initial improvement followed by signs of symptom recurrence, was put back on remicade regimen. Cant say things have improved dramatically just playing the waiting game for now and hoping for the best.
 
Donk4263 said:
Does anyone seem to have pain in every joint in their body? It seems like my ankles, knees, hips, wrists, elbows, shoulders and back never stop hurting.

Am I just falling apart or what?
Click to expand...

Hi, I'm very new to remicade... Going for my 3rd loading dose tomorrow. One of the few things my doctor warned me about before getting started was that some people experience joint paint while on remicade and that it was treated simply with Tylenol.

I'd mention it o your doc and see what they say.

Best of luck!
 
I get my 5th infusion this Thursday and I amnpraying so hard that this onewill be the one that makes me feel better~ I have seen some improvement but not much! I feel very tired after for that day and the next~i have had bad headaches, and nausea as well as multiple joint pain after the 2nd and 3rd infusion. But tylenol does help!
good luck to all
Xo

Michele
 
Angie's Mom said:
Hi, I'm very new to remicade... Going for my 3rd loading dose tomorrow. One of the few things my doctor warned me about before getting started was that some people experience joint paint while on remicade and that it was treated simply with Tylenol.

I'd mention it o your doc and see what they say.

Best of luck!
Click to expand...

Thanks for the reply...I have been taking Remicade for nearly 3 years and it just seems to be getting worse.

Plan to see my Gastro later this month to discuss.

Thanks again,
 
Hi, I am new to this group (so hi!).

I am seriously thinking about asking my GI doc if I can stop Remicade. I have been getting it every 6 weeks (5mg/kg) for 4 years now.

It works amazingly well for my Crohn's and fistulae - and for that I am pleased. But I have been a human petri dish the past year or two - sick as a dog with everything that comes around and sick for weeks. I am not sure what to do. In the past year I have been hospitalized for a lymphatic infection and have had long running respiratory infections (like 6-10 weeks) that knock me completely out. Right now I am on week 5 of a "virus" that has stripped me of my voice, given a killer cough, caused my throat to swell to the point of almost needing prednisone, and basically made me miserable.

Long story short - I love Remicade for my Crohn's but I hate missing months of work/life because of illness. My GI doc thinks I am nuts to even raise the issue. Any thoughts from your experiences?
 
Hi Lizzzil,
I'm new to this as well.i can't comment on going off of remicade because I'm just getting started. I do wish you luck with what either way though. Let us know what you decide to do.
 
Thanks, Angie's Mom. I will. The decision might be moot, actually, if my current infections are not beaten soon (because it will be too long between infusions).

Good luck with starting Remicade. It truly gave me life (sounds corny but true) and freedom. I hope it works wonderfully for you!
 
I have my first remicade infusion tomorrow morning. I'm freaking out. I'm absolutely terrified. My GI wants to give me a steroid as a pre-med which I have had a major reaction to before. He seems to think it won't be a problem but I'm still scared.

What can I expect during/after the first infusion? Is it true that I won't experience a reaction if I'm going to get one until the second or third infusion?
 
Hi PheonixBird,

So first off, good luck on the remicade!

There is nothing to worry about, I'll tell you how it went for me. First you get weighed. The nurses will ask you a series of questions about your current health, meds and if you've had any infections or been on antibiotics in the last week or so. They will take you blood pressure and temperature (they will continue to do this every 1/2 hour.) they will start an IV and then they will start either your pre meds or your remicade. From what's been explained to me, it takes 2 hours to receive the whole bag of remicade. Over the 2 hours they can increase the amount being administered to you.
For my first 2 loading doses, I stayed for an hour after my infusion so they could monitor for any reactions.
That's it! Some clinics will offer snacks.
Bring a book or prepare to just lay back and nap!
I hope this helps.
Good Luck!
 
PhoenixBird, Our daughter went through her first two infusions with no problems or reactions. If you get this in time I'd suggest bringing a bit more books, knitting or what ever you do to pass the time while being infused, it took longer than we expected.
 
Donk4263 said:
Thanks for the reply...I have been taking Remicade for nearly 3 years and it just seems to be getting worse.

Plan to see my Gastro later this month to discuss.

Thanks again,
Click to expand...

Jut wondering if you have heard from your doctor at all? I had my 3rd infusion last Tuesday and by Friday my joints were so sore I was in tears. I can't bend my fingers or wrists and my shoulders, hips and ankles are hurting so bad I can't even pick up my daughter. I'm having a hard time getting up and down the stairs... It just goes on and on.

I spoke to my remicade nurse and she explained that a lot of people with bowel diseases also suffer from other inflamatory diseases... Like rheumatoid arthritis!!! She said that often remicade can exacerbate the symptoms. I have a call in to my doctor now, so I'm just waiting.

Anyone else with a similar issue?
 
I spoke to my remicade nurse and she explained that a lot of people with bowel diseases also suffer from other inflamatory diseases... Like rheumatoid arthritis!!! She said that often remicade can exacerbate the symptoms. I have a call in to my doctor now, so I'm just waiting.
Click to expand...


My son has joint pain as an EIM of CD, his runs concurrently with flares. There are different types of joint pain/arthritis that can be an EIM( extra intestinal manifestation) of CD.
 

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