Remicade Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

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
Click to expand...

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.
Click to expand...

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.
 
Is there ever a safe amount of time to be on Remicade?

Our daughter is doing so well right now, it has been almost a year since she started.

Other than complications, when do you decide to get off of Remicade?
No one probably can answer that, it is different for everyone. I guess my real question is, has anyone decided to stop Remicade because they felt better and their IBD stayed away?

I would appreciate your input
 
Even though I'm in remission I had no plans of stopping Remicade because I'd like to stay in remission. Stopping Remicade builds up antibodies to the medication making it so you may not be able to use it again in the future if it were needed.

I only stop medications if its clear that they are causing more harm than good.

I've heard of members on the forum who have been on Remicade for 7 years and up and the medication is still working for them.
 
Jennifer said:
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.
Click to expand...

sorry to hear that Jennifer especially when it was working for you. :hug:
ju
 
Well hopefully Methotrexate will work well enough to keep me in remission. We decided to go that route instead of Cimzia because Cimzia will likely cause infections as well and I'd like to save that for an actual flare. Sucks when you've pretty much exhausted your medication options. New stuff is currently in the trial stage though. :D
 
Same here LMV, just had a colonsocopy and he result was severe inflammtion, so looks like Remicade isnt working for me. I think thats whay its important to look at your diet seriously and give your bowels as much help as possible. I think I will have to look at either the SCD or Paleo diet now :(
 
You see it so often on the forum, and I don't think doctors tell you the real deal.
I was diagnosed 5 years ago now and I was told it can be controlled with medication and diet makes no difference.
Its only really since starting remicade that I have seriously thought about the fact that I'm only 22, and only have maybe 2-3 medications left to try. I could have another 60 years of this yet!
 
Jennifer said:
Even though I'm in remission I had no plans of stopping Remicade because I'd like to stay in remission. Stopping Remicade builds up antibodies to the medication making it so you may not be able to use it again in the future if it were needed.

I only stop medications if its clear that they are causing more harm than good.

I've heard of members on the forum who have been on Remicade for 7 years and up and the medication is still working for them.
Click to expand...

I think you are right Jennifer about stopping the medication...actually, stopping any of the biologics will cause your body to build up antibodies.

Remicade is the 3rd (and I'm afraid last) biologic I can take. I have taken Humira and it worked great for about three years, then my rhuematologist switched me to Cimzia...this worked great for the arthritis, but over the course of that year, the Crohn's got much worse and my colonoscopy showed new blisters.

I have been on Remicade for just over a year, plus I am taking 6-MP which my gasteroenterologist recommended to help my body not build up antibodies to the Remicade.

Has anyone been reading or hearing about the promising clinical trials of Stelara? I'm curious to know :)

Thanks
 
Hope345 said:
Is there ever a safe amount of time to be on Remicade?

Our daughter is doing so well right now, it has been almost a year since she started.

Other than complications, when do you decide to get off of Remicade?
No one probably can answer that, it is different for everyone. I guess my real question is, has anyone decided to stop Remicade because they felt better and their IBD stayed away?

I would appreciate your input
Click to expand...

I've been on Remicade since the fall of 2005 - so far it is still working, little bumps here and there but nothing bad enough to make me stop taking it. I get 5 mg/kg every 8 weeks still.....no other meds.
 
My 9 year old has only been diagnosed for a little over a month. We have been doing weekly shots of methotrexate and prednisone pills daily. It worked for 2 weeks, now he is losing weight again and his joint pain is back. The Dr. wants to discuss Remicade...any advice on questions I should be asking the Dr? Or advice on how to deal with this new treatment?
 
@ Kristy5959 - How long has he been on Methotrexate? It can take 2-3 months to fully kick in.
 
Jennifer said:
@ Kristy5959 - How long has he been on Methotrexate? It can take 2-3 months to fully kick in.
Click to expand...

5 weeks. He is extremely moody and now has started being aggressive. He is only 9 and our only boy, so it's hard to know if this is "just being a boy" or a side effect. He is having hair loss too. He still has loose stool with blood in it at least 5 times a day. He has lost 3 lbs in the last week :(
 
Jennifer said:
Do they want to add Remicade on top of the Methotrexate?
Click to expand...
I am not sure. We have an appointment on Wednesday to discuss new treatment options and he just mentioned Remicade was one of them. I figured I would try to get as much info as I could about it before we met with him.
 
Kristy5959 said:
My 9 year old has only been diagnosed for a little over a month. We have been doing weekly shots of methotrexate and prednisone pills daily. It worked for 2 weeks, now he is losing weight again and his joint pain is back. The Dr. wants to discuss Remicade...any advice on questions I should be asking the Dr? Or advice on how to deal with this new treatment?
Click to expand...

ak no, poor wee man,
IMO I would stick to the current regime for a bit longer to see if the pred works for him because once he's on remicade he'll have to stay on it. what dosage of pred is he on. sometimes tapering slower can do the trick. this means going down by 5mg every 2/3/4 wks instead of every wk.
seems a shame he's heading for the biological so soon without exhausting all other routes but if it get him in remission and better then it would be worth it.
ju
 
Kristy5959 said:
I am not sure. We have an appointment on Wednesday to discuss new treatment options and he just mentioned Remicade was one of them. I figured I would try to get as much info as I could about it before we met with him.
Click to expand...

Kristy,
I know its only early days for yous, treatment wise, but what else have you tried. it the mex and pred the only thing you have tried.
remicade is a life saver but it can have dangerous side effects too. check out the treatment forum there's plenty of discussions going on right now about remicade, good and bad.
the only thing I can say is you cant knock it till you try it.
he will be well looked after whilst he is on remicade, if he chooses to go that route. ie- regular bloods to check for any changes. also during the infusion he'll be watched for reactions and they are well equipped to deal with any problems.
if you have any questions about remicade or any other treatment don't be afraid to ask.

ju
 
Holly ?!*# this stuff's expensive!

I had my first Remicade infusion almost 2 weeks ago, and asked my insurance what it might cost. The rep skirted around the issue and said she really couldn't say yet. So, I expected $1,000, maybe $2,000 since it was done at a hospital. Well, I saw the total today and it was $11,300!!

So I guess I'm headed for another $11,300 infusion in three days, followed by a month later. I have requested the Remistart paperwork, but this is ridiculous. It can't really cost that much for a nurse to give me an IV and bring me drinks for 3 hours.

Is $11,000 per infusion typical for anyone else taking this drug???
:ymad:
 
Heck, I don't even get drinks. It's the medication itself that is so expensive. Remistart should approve you and cover whatever your insurance doesn't. Good luck with it.
 
Mine was $4100.. per infusion but I am in Canada and covered by insurance.
Remistart is a good place to go.
Did you apply directly to Janssen? may be the fastest route.
Hope things go well for you.
Hugs and best wishes
Trysha
 
jeffp said:
Holly ?!*# this stuff's expensive!

I had my first Remicade infusion almost 2 weeks ago, and asked my insurance what it might cost. The rep skirted around the issue and said she really couldn't say yet. So, I expected $1,000, maybe $2,000 since it was done at a hospital. Well, I saw the total today and it was $11,300!!

So I guess I'm headed for another $11,300 infusion in three days, followed by a month later. I have requested the Remistart paperwork, but this is ridiculous. It can't really cost that much for a nurse to give me an IV and bring me drinks for 3 hours.

Is $11,000 per infusion typical for anyone else taking this drug???
:ymad:
Click to expand...


Yes, it is the same price here in Oregon. I have not heard of Remistart, so maybe we will look into that too. It would help with the deductible.
 
My son does his infusion at the GI's IV lab so ours is $4500.00. The infusions are generally less expensive at an offsite infusion lab compared to a hospital IV lab. Good luck with the Remicade, I hope it works quickly for you, jeffp.
 
Hi everyone!

I've been on Remicade for about a year and a half in combination with Purenithol and it keeps me mostly symptom free... I am struggling with the side effects, (constant colds/flus/sinus infections, skin problems, hives, psoriasis... Yadda yadda.) though, so I am considering looking at other treatment options.
 
It would be a shame to stop Avee , especially as it is keeping the symptoms away. Are you taking any vits to help boost your immune system. I take a vit D spray which seems to keep the worst colds ect away. I also juice which gives me lots of vit c , juicing is also really good for skin problems.

A quote from Jason Vale "The Juice Master"

"I know first hand the sheer power of the juice. I suffered from severe asthma, incredibly bad psoriasis, eczema, hay fever and one of the most common ailments to hit the UK population - being overweight. Yet by simply swapping my normal junk(ie) foods and drinks for a freshly extracted juice or two a day and by adding a touch of exercise to daily life, my mental and physical health improved beyond anything I had envisaged."
 
Avee said:
Hi everyone!

I've been on Remicade for about a year and a half in combination with Purenithol and it keeps me mostly symptom free... I am struggling with the side effects, (constant colds/flus/sinus infections, skin problems, hives, psoriasis... Yadda yadda.) though, so I am considering looking at other treatment options.
Click to expand...

You just said it is helping you... Don't be so quick to look for other treatments... It is difficult for most members to even get to the state you are in right now. Just be careful. If you are going to try something new, make sure to come back to Remicade if the flares come back. But what do you mean by other treatments? Like Holistic methods? Natural Vitamins? Eastern Medicine? There are only a few other treatments that replace Remicade but it is other types of immune-suppressant drugs. Anyways, keep up the remission. :]
 
hey all,
im 5 wks in and flaring again. its not serious just mucous and a little blood.
what do you think they'll do. im seeing my Gi next wk so im not gonna bother contacting him b4 then.
im seriously browned off.
ju
 
That treatment cost does sound rather excessive. From what I gather, the cost is about £450/$700 a vial (100mg) for the actual drug. So assuming 4 vials, should cost about £16,000/$25,000 (9 infusions) for the first year of treatment. $75,000 in fees for them to stick it in you is a complete rip off, considering it only takes a couple of hours.
 
Remicade should never be prescribed without first having a thorough discussion on the costs and side effects. THOROUGH! My GI did not discuss the cost and I nearly fainted when I found out. I was in tears when I called his office to say I could not afford it. ONly then did they tell me about the Remistart program.
 
sickinlk said:
hey all,
im 5 wks in and flaring again. its not serious just mucous and a little blood.
what do you think they'll do. im seeing my Gi next wk so im not gonna bother contacting him b4 then.
im seriously browned off.
ju
Click to expand...

They could increase the dose, put you on every 6 weeks instead of 8 (dunno if you're already on the max dose or 6 weeks), or add another medication such as Methotrexate or steroids. Let us know how the appointment goes and keep us posted on how you're doing. :)
 
Jennifer said:
They could increase the dose, put you on every 6 weeks instead of 8 (dunno if you're already on the max dose or 6 weeks), or add another medication such as Methotrexate or steroids. Let us know how the appointment goes and keep us posted on how you're doing. :)
Click to expand...

thanks Jennifer,
methotrexate is out cuz of pancreatitis and im steroid resistant.
im usually so upbeat but this shit gets me down. ive been feeling so well for ages and feeling so full of energy and then it creeps back, reminding me that I have a chronic illness. booooooooooooooooo I say. I know the procedure well. just need some sympathy cuz im feeling sorry for myself.
:yfrown::yfrown:
you know how it is.
ju
 
Hi All!

I had my first infusion on Friday 4/19. No reaction during my session. YAY! I did get a little drowsy from the pre-meds but that was it. I felt pretty good afterward the whole thing took about 3 hrs.

I was a little worried about having to sit for 4 hrs. I have a lot of inflamed tissue in my rectum. I brought my trusty Boppy pillow to sit on and was fine. After treatment I hopped in my car without putting my pillow in the seat. I didn't even notice until later. I guess I was feeling pretty good down there. Got a bit tired later in the day. Crashed out in the evening for a long nap.

The next day was a bit weird. My skin ached around the trunk of my body, I was constipated, and had a low grade fever/sweats in the evening. My BM's are usually like clockwork in the morning. I finally produced a few pebbles late in the afternoon but not the main event. Seems like things are back on track this morning. I see more bloody mucus than I'd like though... I also tapered my Prednisone dosage on Friday so that could be the cause.

So far so good I guess.
 
From my experience with Remicade, I didn't get immediate relief. It took about 3 infusions for me to really start feeling better. I still get sleepy later in the day if I have had an infusion. For me, that achy feeling did subside and that low-grade flu fever as well. I have been on it for over a year, and I still have the side effects despite taking all the supplements out there. I usually get bladder and yeast infections more often, and the sinus infections too. I take a probiotic called Align for the gut, and I take another probiotic for the bladder/yeast infections by Bell supplements and I take 50,000 mg of Vitamin D a week...its still frustrating to get these infections, but if I take antibiotics for them, forget about feeling back to somewhat normal since they throw my entire system out of whack!

I am still pretty thankful that the Remicade is helping with the Crohn's and the arthritis that accompanies it.

Oh and I am on the RemiStart program...and its been a blessing!!! Feel free to ask me any questions about RemiStart, I believe your GI doctor has to get the paperwork and the process rolling, then once you have it, you just having to re-apply for it the next year.
 
hi, so I saw my Gi doc today and he wants to add 6mp into the mix even though ive had pancreatitis in the past. he says that ill know pretty quickly if it doesn't agree with me as i'll have pain. I do not want to go there again. it took me months to improve last year. however i'll never know unless I try it. it might be the drug I need.
so im busy googling now but wanted to ask has any of you guys been on both remicade and 6mp?
ju
 
Clash said:
My son does his infusion at the GI's IV lab so ours is $4500.00. The infusions are generally less expensive at an offsite infusion lab compared to a hospital IV lab. Good luck with the Remicade, I hope it works quickly for you, jeffp.
Click to expand...

Mine was at an offsite GI lab and the insurance company was billed $11,000-$18,000.
 
sickinlk said:
hi, so I saw my Gi doc today and he wants to add 6mp into the mix even though ive had pancreatitis in the past. he says that ill know pretty quickly if it doesn't agree with me as i'll have pain. I do not want to go there again. it took me months to improve last year. however i'll never know unless I try it. it might be the drug I need.
so im busy googling now but wanted to ask has any of you guys been on both remicade and 6mp?
ju
Click to expand...

I was not on both at the same time, but I do wish you the best of luck. Pancreatitis sucks!
 
Hey I'm feeling pretty good today! :ybiggrin:

I think the fever might've been related to my Prednisone taper. The body aches went away after 48 hrs. Still figuring out the constipation issue. Was miserable 3 of the last 4 days felt stopped up and the rectal inflammation/swelling was ramping up again. Yesterday I emailed my GI, to adjust my taper schedule. She suggested Miralax. I took a chance and used some laxative tabs I had already. I didn't want to chance going out and having an issue. The laxative did the trick. I'll pick up some Miralax today so I can have it on hand.

Now I'm trying to reintroduce some soft fruit and veggies into my diet. I noticed that my output has changed in appearance since my infusion. Maybe my bowels are functioning more "normally" and my low fiber diet is to blame.
 
Ugh came in for my infusion today. Everything was fine until about 15 minutes in when I got the itchy feeling again. No big deal until the nurse came around and saw a hive popping up on my tummy. Infusion got stopped dr called another benedryl given and Remicade started again this time muuch slower than before. Ive been in the hospital since 9am it is now 2:05 pm and im still getting the infusion itll probably be anouther hour before I get out of here. 1/2 hr for Remicade 1/2 hr for saline...ugh.

Light at the end of the tunnel...ill be feeling better by tomorrow for my sons feild trip
 
I have had nothing but a great experience so far with Remicade.I first started remi in September, so .It's been a little over 7 months now, and I am doing so much better with this med than I was with Humira.At least with the remicade, I can tell when the med starts/stops working.I feel it wearing off just about a week before the next infusion is due.With Humira I couldn't tell anything at all.I think the Humira might have helped a little with the arthritis, but didn't do anything for my crohns.I absolutely dreaded/hated doing those weekly injections.It's so much easier to go to my hospital for an infusion every 8 weeks.Everyone at the hospital has been great.Even the food is good.I have my own little private room with a TV, and can order room service any time I'd like. :) It's been such a better experience compared to humira, and the remi is actually helping!
xoxo
 
Hi all,
I started last fri and the next day I started feeling better. By Sunday my internal bleeding stopped and my fistulas were starting to heal. By wen I was back to normal,going to work being my old self. By Friday I noticed my stomach was starting to get that old feeling again and today I'm so tired that I have no energy for anything. Is this normal for a week after my first infusion? My next one is next fri and it seems like its wearing off fast. If this is normal then I can see if they can get me in earlier. I just don't want to go back to being couch bound.
Thanks
 
Hi Rickgren.
Thats great you noticed a difference so quickly. They might have given you a smaller dose for your first go.

Just wanted to update everyone that I had my third infusion today :) All went ok again. So now I have my first 8 week wait. I'm feeling ok atm so I hope it lasts the 8 weeks. Especially since I am working now.

On my way out I walked by my GI. I told him where I had just been and he checked it went ok. That was nice of him.

Now that I have had the first three and I'm still feeling well, I want it to work even more than I did before. All I ask is for a few healthy years without a flare, I want to forget I have crohn's for a while. (Apart from this place of course :p )
 
Hi,
I'm currently on Remicade and taking 6-MP as well and have been for just over a year. I'm not sure if I am having any problems because I take so many other meds, lol...but so far so good.

My GI doctor told me that taking the 6-MP helps my body not to build up antibodies to the Remicade (as I did with Humira).

Good luck!
J



sickinlk said:
hi, so I saw my Gi doc today and he wants to add 6mp into the mix even though ive had pancreatitis in the past. he says that ill know pretty quickly if it doesn't agree with me as i'll have pain. I do not want to go there again. it took me months to improve last year. however i'll never know unless I try it. it might be the drug I need.
so im busy googling now but wanted to ask has any of you guys been on both remicade and 6mp?
ju
Click to expand...
 
Uneventful (good) infusion today. Not finding that I am as tired afterwards as I was with the first two. Overall feeling really good.
 
AlliRuns I also had my 4th infusion last week and not feeling as tired with the others. I was surprised I figured I would be sleepy and all but nope. Been on vacation and still feeling good.
 
elfgibson said:
AlliRuns I also had my 4th infusion last week and not feeling as tired with the others. I was surprised I figured I would be sleepy and all but nope. Been on vacation and still feeling good.
Click to expand...

That's excellent! Glad it went well :) I don't think I will give up my post- nap/rest if I start not feeling tired after infusion hahahaha
 
Has anyone had a problem getting their Remicade if you have a chest cold? I am scheduled for my infusion next Wednesday. The only thing I am taking for it is Mucinex-D, no antibiotics.

Thanks!
 
cntrygrl504 said:
Has anyone had a problem getting their Remicade if you have a chest cold? I am scheduled for my infusion next Wednesday. The only thing I am taking for it is Mucinex-D, no antibiotics.

Thanks!
Click to expand...

it hard to know. if the cold has been around for a while and there is no green goo/mucous then they might go ahead. OTOH if theres is even an inkling of an infection they will postpone it.
ju
 
cntrygrl504 said:
Has anyone had a problem getting their Remicade if you have a chest cold? I am scheduled for my infusion next Wednesday. The only thing I am taking for it is Mucinex-D, no antibiotics.

Thanks!
Click to expand...

Recently my infusion center has begun asking me before each visit if I have any infections or illnesses, and if so they will turn me away. But for the last several years before now, they've never brought it up. They've also started giving me the Remicade information packet at every visit now (warnings, side effects, etc), which never used to happen.
 
Dave07 said:
Recently my infusion center has begun asking me before each visit if I have any infections or illnesses, and if so they will turn me away. But for the last several years before now, they've never brought it up. They've also started giving me the Remicade information packet at every visit now (warnings, side effects, etc), which never used to happen.
Click to expand...

I get asked asked well, twice. Once when they call to confirm my appt the week before and a second time when I get there.
 
That don't ask me any more, haven't for a while. As long as my lungs are clear and don't have a fever I have not had any problems getting my infusion.
 
Thanks guys! This morning I woke up and finally feel like I am on the upswing and kicking this. I did call the drs office and they said they didn't think it would be a problem as long as I wasn't running a fever.
 
Hi all!

I guess I can now officially join the club since I will be starting remicade in 2 weeks. I want to thank everyone who has posted messages here, because it helped me to finally make a decision to start it. I know there are many possible negatives, but it was good to hear some positives. I'm a bit anxious of course to see if it works for me, but I figure I'll never know until I try!

I've had Crohn's for 16 years and tried the bottom up approach because I am reluctant to take any meds, even though I've learned over the years to just take the meds and stop whining about it. Also, I caught the Crohn's early (runs in family-so I knew pretty much what it was from the start) with a slow onset and have never had a truly horrible time with it as many others have (meaning no surgeries), so I never had a reason before to try the major league meds.

But here I am, with almost a constant flare over the last 2 years, and ready to try anything to get back to what's normal for me (which is never "normal" but much more manageable).

So I'm ready for this, I feel pretty prepared after reading what the procedure is like, and I'm always ready for a good nap or at least a good reading session. My doc's office has a regimen of meds to take leading up to the day so I'm hoping no side effects.
 
Our son Alec (13 yrs old, AKA Obi-Won Crohnobi) is joing the remicade club on Monday. We pray this will be the trick to get him off prednisone and into remission. He is really looking forward to this with such a positive mindset ... and he hates needles! Tells you how much more he hates his symptoms.
 
I am new to this whole forum thing but I have a remicade infusion on fri and I have had them for about 6 yrs now every 7-8 weeks and I have a port where my meds are given. Does this mean I can join this group as well? :smile:
 
Marybrown said:
I am new to this whole forum thing but I have a remicade infusion on fri and I have had them for about 6 yrs now every 7-8 weeks and I have a port where my meds are given. Does this mean I can join this group as well? :smile:
Click to expand...

of course you can, some1 with your experience is an invaluable source of info. welcome to the group.
ju
 
I was put on a course for a year, unfortunately my Doc has changed so I will be going for the review with a new one.
I am feeling so much better than this time last year when I started, but lately I have had some of the symptoms again that I had before my big flare.
I hate to think I will get sick as soon as they stop my infusions.
Has anyone else received just a years worth of treatment and then stopped?
 
beach bum ,
I wish,
I thought if you are on it and successful you stay on it.
did they mention putting you on Imuran or 6-mp to limit reactions if you return to remicade. ive read that you build up antibodies to it while of it and it can cause an allergic type reaction when you go back on and 6-mp stops that from happening.
ju
 
I guess I will need to have a talk with this new Doc, the first one said to just have it for a year and then let the Aza take over after that. But if the remi is keeping the flares at bay I would rather stay on it obviously :/
 
Alec had infustion #1 on Monday ... no problems ... tapering off Pred immediatly and hoping he doesnt have any symptoms before his next infusion. knock wood.
 
Infusion this morning. I can't keep track of how many I've had. It's been a lot and I know it helps keep me feeling pretty good!
 
Hi hope someone can advise me. My son of 15 recently started on Remi. He had his first full infusion almost 2 weeks ago and although his Crohn's symptoms have gone, he doesn't feel that great. He is pale, not that energetic, eczema is flaring. After the first 2 loading doses he actually felt and looked fantastic. Any ideas?
 
Beach bum - as I understand it, in the UK, if you have no symptoms anymore after being on Remicade for a year then they will stop it. Lots of people are ok after stopping it which is why they do it, mainly due to cost and also uncertainty of how safe it is long term. However if you still have some symptoms they will carry it on indefinitely.
 
Ah I see, thanks for that.
I don't have any major symptoms at the moment, but lately I have been experiencing some of the things I had before I became ill, I din't know what they were then but I guess I am more aware now and know it could be something :/
 
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?
 
Hi i start Remicade on Friday never had it b4. I dont really know what to expect. Like many of you no drugs have helped me either. I am positive that this will put me in remission though. I am just a bit nervous that I have not been checked for infections as my consultant wants me on it straight away. Fingers crossed.

Alison
 
alisonwilkinson said:
Hi i start Remicade on Friday never had it b4. I dont really know what to expect. Like many of you no drugs have helped me either. I am positive that this will put me in remission though. I am just a bit nervous that I have not been checked for infections as my consultant wants me on it straight away. Fingers crossed.

Alison
Click to expand...

your post made me cringe. I don't know about every1 else but I had a mantoux test for TB and had labs done before I started. I wonder whats the big panic. are you flaring badly?
ju
 
Hi I have had the mantoux test ages ago. I had bloodwork done last Tuesday. I was suppose to be starting Humira but 6mp caused my liver function to go all over the place. I have not been on any medication since February. I have lost 2 stone in weight since last July. Doctor worried about weight loss and not absorbing the food i am eating so said need Remicade asap. Doctor thinks remicade will work faster than Humira. IBD nurse said they usually check to see if you have any infections but want to get me started Friday. She will ring me on Thursday to check if I am aware of having any infection. Thanks for replying.

Alison
 
Blood work done about one week to one week and half before the infusion sounds pretty normal. That's how mine have been done so far anyway. It's hard but sometimes you just have to trust the docs, they know what they are doing.
 
oh that's better alison, I thought you meant that you hadn't had any screening done. your set to go ahead then. you would know if you had an infection of any sort so im sure you'll be fine. good luck. its no bug deal. just lay back and relax. can take 4 hours the 1st couple of times.
ju
 
Hi got back at 6pm. My appointment was at 12.30pm after checking urine blood pressure etc I finally got going at 13.30pm. It took 2 hours and had to stay for 2 hours. I will have to stay 2 hours every time I have an infusion at my hospital. My pre medication was hydrocoisone through iv and 2 paracetamol. I feel fine so far no reactions. Next infusion in 2 weeks. Thanks for reading.

Alison
 

Similar threads

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

Latest posts

Back
Top