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Remicade Club Support Group

Just asked this to someone else with a seton - Do you know how they decided to take your seton out? My first one (a year ago) I only had for a few weeks, as they took it out for another surgery. This one I'm not sure when they'll take it out. I know that it's there to promote drainage so that a backup/abscess does not occur. I don't mind that - but sometimes, especially when it's seeping and/or I'm working out, it will make me chafe in between my cheeks and man does that hurt! It's like rug burn! Hoping since I'm on Remi now they may take it out soon?!
My husband had his setons taken out last week after 6 months of remi. Decision to take them out is based on how remi helps and how far fistula are healing, is what our GI told us
 

dave13

Forum Monitor
Location
Maine
Just asked this to someone else with a seton - Do you know how they decided to take your seton out? My first one (a year ago) I only had for a few weeks, as they took it out for another surgery. This one I'm not sure when they'll take it out. I know that it's there to promote drainage so that a backup/abscess does not occur. I don't mind that - but sometimes, especially when it's seeping and/or I'm working out, it will make me chafe in between my cheeks and man does that hurt! It's like rug burn! Hoping since I'm on Remi now they may take it out soon?!
Hi hkspence.Yes,draining setons do just what they say(or hopefully do what they say),and that is to drain.Remicade is suppose to 'dry' them up,as my GI says.How long it takes is different for everybody.I had my first seton removed a little over a year from the fistulotomy and my first infusion.We waited six months,with a three month appointment in between,to see if a second seton could be removed.My colorectal surgeon and GI were disappointed in my progress and a second one was not removed.

A long winded answer is,as my colorectal doc said...it may be a long time.It may not.It is great you can work out and be active.In my opinion,if you are are able to do so...it will help.Perhaps you have visited the fistula support group.If not http://www.crohnsforum.com/showthread.php?t=47942 fistulas,fissures and abscesses support.I have not seen the 'chafe between my cheeks' support group,butt there are chronies who hit the gym.I hope remicade helps you.
 
My next infusion is on Monday - this is the first one at the max dosing of 10mg/ kg. I was wondering if anyone else is on the max dose and if so, does the infusion take longer to complete? I'm imagining, more meds means more time, but wanted to stop in here and ask about others' experiences.
 
My husband was on 10 mg/kg for his first 5 infusions. Including hydrating, flushing and time for Remi, it took around 3 hrs give or take few mins. Now he has been reduced to 5 mg/kg. We thought time would be reduced, but nope, stays the same. Good luck :)
 
I've been on 10mg/kg for a year and a half. It takes the same amount of time. (2 hour infusion). They just mix more powder (Remicade) with the same amount of liquid (Saline)
 
I guess I just joined the club. I had my first dose of Remicade yesterday so I'm still waiting to find out how it works for me.

I'm starting it during a bit of a flare, (I have a partial obstruction that gives me grief fairly regularly) so I don't know if my symptoms are from that, or if I'm getting some side effects from the Remicade. Has anyone else here had problems with nausea and vomiting at all?

Anyway, it sounds like a LOT of people in here are having good results, so I'm cautiously hopeful that I will join those ranks. I'm currently also taking Prednesone, Pantaloc, and Azithioprene. Do you generally continue to take the full cocktail mix, or is this something I should be expecting to decrease?
 
I guess I just joined the club. I had my first dose of Remicade yesterday so I'm still waiting to find out how it works for me.

I'm starting it during a bit of a flare, (I have a partial obstruction that gives me grief fairly regularly) so I don't know if my symptoms are from that, or if I'm getting some side effects from the Remicade. Has anyone else here had problems with nausea and vomiting at all?

Anyway, it sounds like a LOT of people in here are having good results, so I'm cautiously hopeful that I will join those ranks. I'm currently also taking Prednesone, Pantaloc, and Azithioprene. Do you generally continue to take the full cocktail mix, or is this something I should be expecting to decrease?
Welcome to the club ;)

The cocktail mix might be reduced if you see improvement with Remicade. The overall idea of all meds is to reduce inflammation to reduce severity of current complications and prevent future complications such as obstruction from stricture/ abnormal tissue growth, etc. Due to this, it is not uncommon to have oral meds that accompany Remicade. Studies have shown that accompanying meds such as Methotrexate and Azithioprene can help slow anti-body formation, meaning higher potential for long-term stability in a treatment plan. In my experience, the GI's I have worked with have aimed for inflammatory control and reduction of corticosteroids like Prednisone due to how adverse and immediate the side-effects are, it is not ideal for long-term management of disease. Pantaloc sounds like it's in the same family of anti-acids to reduce discomfort/ symptoms of active ulcers, hopefully you should see ulcers healing up on Remicade which often eliminates the need for these types of medications.

So to sum up - if you response well to Remicade I would venture a guess that you will see a reduction in the oral meds you are currently on, although you docs may have reason to keep you on Aza or use a different medication to manage antibody formation against the Remicade. Once you finish your loading doses, I'd suggest pushing your GI to see what your medication/ treatment plan goals look like long term, and their reasoning for why they suggest moving forward as they do. Hope this helps.
 
Thanks for the reply!

I suspect this whole Crohn's thing is going to teach me a lot of patients. I really only experienced the onset of it in October, and I got my DX really quickly which I am learning is a lot more fortunate than quite a few people.

I was hopeful that I would be one of the people who have a noticeable difference right away on the Remicade, but no such luck yet. I don't know how common that is judging from reading here. It seems like most people do need to fully load.

For me, it has only been a couple days and I DID start it in the middle of a clear fluids only kind of flare, so I should remember to keep my expectations reasonable.

Still loading and hopeful! It is just nice to vent once in a while with people who have all been there and done that.
 
I've officially become a sucker for 8:00 a.m. infusions. Nothing like sleeping through the whole thing and still having the day left over.

Thanks all who replied about my earlier question. Everything went smoothly and receiving responses really helped me to better anticipate the day.
 

dave13

Forum Monitor
Location
Maine
I go for the 8am infusions as well.Have it done and continue with your day.I have one this Friday and my wife is coming with me.I should get done just in time for us to go to lunch.
 
Hi Everyone,
I'm new to this club. I have an adult son with mild to moderate Crohn's 2 years ago when he was a freshman in college, he tried Lialda first but now seems not working well, colonoscopy showed he still has inflammation in his Colon. Now doctor recommended him to try both remicade and MTX. I'm scared. I posted my concerns at other places and didn't find anyone similar to my son's case.
My question is that : Is anyone here with mild to moderate crohn's ever tried remicade or both Remi and MTX? I know Remicade is effective among patients with moderate to severe cases, but doesn't mention mild to moderate cases. I'm afraid it will suppress my son's immune system too much. Because I was told the Remicade dose will be the same 5mg every 8 weeks. MTX is for preventing antibody from Remicade. Is this sound necessary? Or should my son just try MTX alone first? I researched that MTX alone should also work well for Crohn's right?
Sorry I don't know how to start a thread here, I just popped in here and don't know if it's right or not. Just trying, hopefully can get some responses. Thanks!
 
The success rate for methotrexate by itself is fairly low...like 20-30%. Same for 6mp and Imuran monotherapy. I had an allergic reaction to methotrexate - immediate break out in hives on my face - so I cant take it. Even biologics are only 50% success rate. But in combination up to 70%. Talk to the doctor about Entocort. Crohn's is an immune disorder so anything you do to treat it will have to target the immune system in some way unfortunately...
 
The success rate for methotrexate by itself is fairly low...like 20-30%. Same for 6mp and Imuran monotherapy. I had an allergic reaction to methotrexate - immediate break out in hives on my face - so I cant take it. Even biologics are only 50% success rate. But in combination up to 70%. Talk to the doctor about Entocort. Crohn's is an immune disorder so anything you do to treat it will have to target the immune system in some way unfortunately...
I wonder where you got those statistics. I thought they would be higher. As for Entocort, we discussed with doc, but he seemed to rule out this option.
 
I wonder where you got those statistics. I thought they would be higher. As for Entocort, we discussed with doc, but he seemed to rule out this option.
I agree - I've read studies where remicade has about 60% effectiveness. All the statistics in the previous post are too low. Of course the drugs don't work for everyone but they are more effective that stated above.
 
I'm on Remicade for moderate Crohns, have been for over 2 years and it is doing a pretty good job. I seem to get infections more often, but I see my doctor and get antibiotics and the infections go away. I'm pretty much living a normal life. The only side effect is a rash that I use various products to control.
 
Hello! I've got moderate Crohn's and have been on Remicade for almost a year. My doc just made the decision to bump me up to every 6 weeks, but at my infusion yesterday i had a very severe allergic reaction( throat closed up and i couldn't breathe). My doc wants to continue with the Remicade, just pre treat with Benadryl/hydrocortisone/Tylenol. I have to admit I'm a bit nervous about it. Does anyone else have expedience with this kind of thing? Is my anxiety for nothing?
 
I have been on Remicade every 8 weeks for moderate to severe Crohn's disease for the past 5 years. I also get occasional sinus infection, yeast and urinary tract infections, but the benefits of taking the Remicade have definitely outweighed the side effects. Also, other patients that take Remicade on the same days as I do also take Benadryl for hives/allergic reaction and that seems to have no negative effects with their Remicade infusions.
 
Hello! I've got moderate Crohn's and have been on Remicade for almost a year. My doc just made the decision to bump me up to every 6 weeks, but at my infusion yesterday i had a very severe allergic reaction( throat closed up and i couldn't breathe). My doc wants to continue with the Remicade, just pre treat with Benadryl/hydrocortisone/Tylenol. I have to admit I'm a bit nervous about it. Does anyone else have expedience with this kind of thing? Is my anxiety for nothing?
I've been on Remicade for two years and I get infusions every eight weeks. Since my first treatment, they've always given me benadryl and tylenol before starting anything. It prevents any reaction and it makes me fall asleep. I've never had a reaction but it may be contributed to having the benadryl before every treatment.
Hope it all works out for you!
 
Has anyone developed pneumonia while on Remicadee? I've been feeling pretty bad for several days now and have an uncontrollable cough. Going to doc today.
 
I've been on Remicade for two years and I get infusions every eight weeks. Since my first treatment, they've always given me benadryl and tylenol before starting anything. It prevents any reaction and it makes me fall asleep. I've never had a reaction but it may be contributed to having the benadryl before every treatment.
Hope it all works out for you!
Remicade is being substituted by Remisim in the UK. It is a "biological similar" drug with infiximab not 100%.
Remicades patent time up & this is being used (cheaper) in its place. I'm one of the 1st to transfer to it.
So far the same but had a few occasions had what I can only describe as extreme fatigue forcing me to rest & lie down for 2 hours.
I'm also on the 8 weekly I fusions of Remicades past 3 years.

For my trust I had the 1st Remisim over 2 hours not the customary 30 minutes I had worked upto. Then will have 1 more 2 hourly them hourly infusions subsequently every 8 weeks.
Also notice greater & longer lasting bruising where the canula was put.
Having said that, my Crohns continue to be stopped & for that no price too high for me :)

Shalom & kind regards, john
 
Has anyone developed pneumonia while on Remicadee? I've been feeling pretty bad for several days now and have an uncontrollable cough. Going to doc today.
It is recommended by my health trust to have the pneumonia jab before commencing Remisim (Remicade). Please don't be alarmed if you didn't I had mine 2 months back :)

Shalom & wish you well soon, john
 
I also get pre-meds with my remicade. Tylenol, fexofenadine, hydrocortisone. I used to also get Benedryl, but it makes me jittery and like I'm crawling out of my skin. So my doc said I could stop getting that and I haven't had any adverse reaction.
 
Has anyone developed pneumonia while on Remicadee? I've been feeling pretty bad for several days now and have an uncontrollable cough. Going to doc today.


I once got remicade while I had a chest cold. Four days later, I had pneumonia. Really beat up my immune system.
 
I once got remicade while I had a chest cold. Four days later, I had pneumonia. Really beat up my immune system.
Vital to *always* tell specialist nurse of *any* infection before infusion even a minor cold. I also found out the hard way.
Better to delay than be laid up :)

Shalom & kind regards, john
 
Hi Jomar_uk, my version is Inflectra which is a synthetic version apparently & as such cheaper by quite some distance than Infliximab.
Rgds
Grant
 
Hi Jomar_uk, my version is Inflectra which is a synthetic version apparently & as such cheaper by quite some distance than Infliximab.

Rgds

Grant


Greetings from Essex :)

It seems there has been a big admin upset in our trust.

The funding for remicade has been approved & prescribed *but* the new drug remisim has to be "represcribed " for those who are being put into it. Last Thursday I was the first one and about 30 patients at that time were cancelled till the Consultant represcribed the new drug *after* obtaining permission from the patients. Let's say it was a very very hectic day :)
Being a wheelchair client PALS stepped in & really got things rolling for me.

There are a few alternatives I understand, I guess from being called remisim as a "biological similar " it's a clumsy name for remicade similar :)

Any I wish you well on inflectra, from what I heard remicade may also be forced to heavily discount its product as it is being dropped all over the place with these new ones (also heavily discounted :)

Shalom & stay well, john
 
I had strep throat and canceled my infusion. It's now three weeks late, but they tell you not to have it if you have an infection. It can get much worse. I'm having some D and blood, hopefully that will all clear up on Friday when I get my dose. I wonder if Canada will go for the generic as well, probably will.
 
I had strep throat and canceled my infusion. It's now three weeks late, but they tell you not to have it if you have an infection. It can get much worse. I'm having some D and blood, hopefully that will all clear up on Friday when I get my dose. I wonder if Canada will go for the generic as well, probably will.
Good call, trust all goes well.

Shalom john
 
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Today my Remicade nurse told me that all the local doctors have put in a no substitute order for their Remicade patients. The patients that have been on it before, that is. New patients are allowed to go on the generic. She said it's synthetic, whatever that means. So I'm not going on it.
 
Not sure if this is where I post or not...?

I'm new to remicade, had my first dose Wednesday. I woke up this morning and my throat really hurt like a burning, and I have a lot of pressure in my ears. It feels like it did last time I had strep, just a little over a month ago, but there are no visible symptoms, last time my throat to the roof of my mouth was all blotchy red and I had white spots where my tonsils should be. Might be more info than you need... I don't know. (Oh and no fever)

My question is, will I be fine to wait it out until Monday so I don't have to go to ER for sore throat? I see my GI Monday, but I could go to an urgent care or something after.
 
Not sure if this is where I post or not...?

I'm new to remicade, had my first dose Wednesday. I woke up this morning and my throat really hurt like a burning, and I have a lot of pressure in my ears. It feels like it did last time I had strep, just a little over a month ago, but there are no visible symptoms, last time my throat to the roof of my mouth was all blotchy red and I had white spots where my tonsils should be. Might be more info than you need... I don't know. (Oh and no fever)

My question is, will I be fine to wait it out until Monday so I don't have to go to ER for sore throat? I see my GI Monday, but I could go to an urgent care or something after.
Hey Ships... It's really your call.

Remi really drops my ability to fight things and infections can progress extremely quickly, often reoccurring following the next Remi infusion if they weren't completely eradicated the first time around making for a frustrating cycle to pin down and treat.

My base criteria for determining if I can wait through a weekend or need to go in ASAP is largely dictated by if I have a fever or not and if I'm struggling to remain hydrated or not. However, if pain, swelling or any other symptom is causing disturbance to sleep or basic bodily function I have learned it is better to play cautious and check my pride by going in, be it quick care or ER depending on resources available.
 
Hey Ships... It's really your call.

Remi really drops my ability to fight things and infections can progress extremely quickly, often reoccurring following the next Remi infusion if they weren't completely eradicated the first time around making for a frustrating cycle to pin down and treat.

My base criteria for determining if I can wait through a weekend or need to go in ASAP is largely dictated by if I have a fever or not and if I'm struggling to remain hydrated or not. However, if pain, swelling or any other symptom is causing disturbance to sleep or basic bodily function I have learned it is better to play cautious and check my pride by going in, be it quick care or ER depending on resources available.

Thank you for your response! I was asking because
I would think being immune suppressed could speed up progression, but I wasn't really sure. The last two times I took my temp it was 98.3, so I think I'm going to go off of that, unless the pain gets worse, then I probably won't be able to handle It and have to go in. I always think I have a high pain tolerance until I get sick, which makes it hard to make a clear judgment call.
 
Today my Remicade nurse told me that all the local doctors have put in a no substitute order for their Remicade patients. The patients that have been on it before, that is. New patients are allowed to go on the generic. She said it's synthetic, whatever that means. So I'm not going on it.
Hi fellow Canadian! 👋👋

I have been told that health Canada has not approved inflectra for Crohna or UC (due to small differences that could affect Crohns or UC, it is approved for all the other indications like RA, psoriasis, etc). Thus I was told we could not be forced to switch until it is approved for Crohns and UC. I'm sure he drug companies will be doing studies to prove it works in Crohns/UC now so I would guess it wouldn't be long so for now we are safe.
 
@stickman7755

Congrats man!! That's awesome to hear!

I go for my second infusion on Tuesday, felt pretty good after my initial dose so I hope that trend continues!

Keep us posted on your success and I hope you continue to feel great!!!
 
Does anyone know when this drug loses it patent and it becomes significantly cheaper????

It's been around for 15 years how are the proprietors still collecting massive revenue on this drug??
 
Does anyone know when this drug loses it patent and it becomes significantly cheaper????



It's been around for 15 years how are the proprietors still collecting massive revenue on this drug??

Patent expired!

There is a new influximab drug out called Remsima, same potency and cheaper the Remicade. It's being rolled out here across the uk, I was the first to switch over to it I was told.

Shalom john
 
Hi all..probably a dumb question. I've been on Remi for 3 1/2 years now. It has become less effective so my GI dr. did the test for antibodies etc. I have not built up antibodies however there isn't enough Remi in my system.
I'm On 5 kgs now. My question is...if I go to 10 kgs...does my cost double ? !!
 
Hi all..probably a dumb question. I've been on Remi for 3 1/2 years now. It has become less effective so my GI dr. did the test for antibodies etc. I have not built up antibodies however there isn't enough Remi in my system.
I'm On 5 kgs now. My question is...if I go to 10 kgs...does my cost double ? !!
Hi

I think you will find it is 5mg per kilogram of your weight :)
10kgs of remicade would be watching tooooooo much :))
All the best in in reading the antibodies. There is a cheaper but virtually
Identical drug called Remsima that is being switched over to here in
the UK, maybe worth mentioning to your Consultant or ask your
IBD specialist nurse?

Shalom & best wishes, john
 
I'm sorry..I posted that I get 5 kg. What I meant was 5 mg/kg . Usually I'm reading when they up your dose it goes to 10 mg/kg . I just was wondering if anyone could tell me if my cost woul be twice as much ? I get some assistance to pay for my copays for my infusions but the money they allow me for the year would be used up too quickly at that rate !
 
Finally! I wonder how much it costs compared to remicade.


I believe it is approx 15% cheaper, but they are now cutting prices in certain countries. I think they should pay the penalty of keeping the price artificially high and see what their greed has cost them ( to say nothing of some people who simply could not afford to buy the job in countries unlike the UK , where our NHS is still the envy of the world :)

Shalom John
 
I'm sorry..I posted that I get 5 kg. What I meant was 5 mg/kg . Usually I'm reading when they up your dose it goes to 10 mg/kg . I just was wondering if anyone could tell me if my cost woul be twice as much ? I get some assistance to pay for my copays for my infusions but the money they allow me for the year would be used up too quickly at that rate !


I have it supplied for me for free in the UK (Good job I weigh 112 kgs :). I would suggest talking to your consultant or ibd specialist nurse.

Shalom & trust all goes well, John

Ps are you taking any other medication in addition to Remicade? I can only have the drug as my body reacted badly to the other alternatives, is aziothiprine, mecaptapurin (6-MP) & methotrexate.
 
Cost wise your drug cost will just about double.( I went from $3100 to $6100) If you pay for the nursing time and supplies etc that shouldn't change since they infuse 10mg/kg over the same amount of time as 5mg/kg.
 
Thanks for the replies. Jomar-uk..yes I also take Azathioprine and prednisone. I will definitly ask tomorrow when I go for my infusion about this new drug.
FrozenGirl...I was afraid that would be the case. I have a copay of 3o% for each infusion. I think my only other option would be to have the length of time between my infusions shortened. That wouldn't eat up my drug assistance as fast .
 
Yes I did but when you recieve Medicare you don't qualify ! Duhhh
(Because it's a federal program. ) wouldn't you think since I'm on Medicare plus have a Medicare advantage insurance on top of it ...I'd be able to afford my infusions. ? But my copays are 30 % ! That's not small cookies !
I did however find a good assistance program. But they only give you a set amount that they will cover for the year. That's why if I went to double the dose I'd get into trouble. Oh these " Golden Years " ..sigh.
Thanks for your reply .😌
 
Thanks for the replies. Jomar-uk..yes I also take Azathioprine and prednisone. I will definitly ask tomorrow when I go for my infusion about this new drug.
FrozenGirl...I was afraid that would be the case. I have a copay of 3o% for each infusion. I think my only other option would be to have the length of time between my infusions shortened. That wouldn't eat up my drug assistance as fast .
Keeping in my prayers all goes well.
Here are the 2 drugs but Remsima the newer but cheaper over here.

Shalom john

uploadfromtaptalk1468919893573.jpg
 

dave13

Forum Monitor
Location
Maine
I got an interesting call from my insurance company today. I was asked if I would be interested in taking part in a pilot program to have infusions at home. It is currently being used in the most rural parts of the state where hospitals are far and few. The at home service will be less expensive than going to a hospital.Since I have had infusions for two years with no reactions I would be an at home candidate. I await a call from the nurse to see if I can do it. I am curious to find out more information.

Anyone have experience with at home infusions?
 
Hmmm...that is interesting ! But a home health nurse would probably have to come to your home to start the IV. That's a tad more involved than just an injection !
My hubby had to have IV at home antibiotic therapy last year ..but he had a port implanted . It was cool the way they sent little liquid bombs and all you did was hook them up to the port and they automatically infused ! What they don't think of now days !
I'll be watching for any updates !
 

dave13

Forum Monitor
Location
Maine
Forum members have brought up the concerns of having a bad reaction while at home. Could they deal with it? I really don't know anything until they call me and we chat. I'll post new info when I find out. Even if I don't do it I feel I should check it out.
 
That is very true..just because you never had a reaction doesn't say it couldn't happen.
Like you said though..it's worth a listen. Take care !
 
I feel Remicade has lost its effectiveness after 2 years, it's been replaced by dry heaves,on a daily basis,, my doc increased the infusions to every 6 weeks..Imuran at 150mg per day keeps most demons away ..insurance in the US is not an issue when Medicare kicks in, as long as you have a supplemental insurance ..Remicade costs $11,000 in the states,,
Keep up the battle friend,,
 
Hi... Just my little story. I feel the Remicade isn't cutting it anymore either. I'm also on .imuran. I probably need more frequent infusions or an increase in dosage. Neither of which my GI dr. Has mentioned so far. ?
I'm on Medicare..have a Medicare Advantage supplement..but still have 30 % copays ? Which if you do the math is a LOT ! I get my infusions every 8 weeks..at my Dr.s facility ..more would bankrupt us.
Now I did find a patient assistance program which does pay so much per year . But I must be careful I don't exceed the limit.
Oh aren't the joys of retirement and growing older just too numerous to mention ? Especially when you have a few chronic health conditions. Anyway...Hope you feel better...peace.
 
Has anyone ever had liver problems because of remicade?

My Alk. Phosphatase levels have been high the last two times I've got my bloodwork back.
 
I'm due my next 6 weekly infusion in 6 days, regarding my gut I've made it this far easier than ever before which I'm pleased about. However my Proctitis hasn't shown any great improvement.
Rgds
Grant
 

dave13

Forum Monitor
Location
Maine
I'm due my next 6 weekly infusion in 6 days, regarding my gut I've made it this far easier than ever before which I'm pleased about. However my Proctitis hasn't shown any great improvement.
Rgds
Grant
I recall taking canasa,suppository,for proctitis.
 
Hello all,
My 12 yo daughter is set to begin Remicade infusions tomorrow. I need some advice/reassurance please. Is there anything you would recommend taking with us? It is about 2 hours away from our home & they told us we would be there about 4 hours this time. She is very anxious about it & I just want to prepare her the best I can. I asked the nurse about giving her something for the anxiety but they wouldn't. UGH!!!!!!!! We both need it--haha!! She is supposed to be going to a place that is set up just for kids so hopefully that will make a difference. Any advice is much appreciated. Thank you all so much--I have learned a lot reading your stories.
 
Hi there! She should drinks lots of water the day before, which helps keep the veins plumped up. She should take a book, or something to watch a movie on, or something to keep herself entertained. She may sleep through some of it. My clinic provides drinks and small snacks, but maybe make her lunch if it isn't provided. My clinic also has blankets, but she may have a special one that will be comforting.

I actually look forward to my Remicade days- it's like a forced rest period hehe I go to bed afterwards for the rest of the night, watch tv and rest. Best of luck to her!
 
i have been on Remicade for over 3yrs now.i have never had any issues with the infusion.occasionally i have felt tired after treatment.The infusion only takes 2hrs once started.I get weighed in before treatment so they can mix the correct dosage.It is chilled when it is administered and that may cause the tiredness i have felt a few times.Since this is her first treatment they will constantly monitor her.I am actually going in tomorrow for my 2 month treatment.The worst part for me is pulling off the tape afterwards.Always leave with less hair on my arms than i went in with.So i always put lotion on my arms before going in.The nurses get a kick out of that.Good luck tomorrow.
 
My husband has been on remicade for a year and a half now and it's great. Make sure she drinks lot of water so finding a vein isn't a trouble. Once the IV is in, she just has to relax and chill. I mostly see people sleeping through the infusion period. You guys can do whatever you like. Maybe take some cookies for her? You can have your mommy-daughter time there :) I hope it works for her. Good luck!
 
I've been on Remicade for about 2 1/2 years now. I just realized I'm still getting the same dose, even though I've lost a lot of weight that I had put on while on Prednisone. I don't see my GI again until June. Should I mention that I'm getting a higher dose than 5mg/kg? I noticed after my last infusion, that my mind was racing afterwards.
 
Coolbeans, I was on Remicade and Imuran for 6 years. After the 1st 4 treatments at home I started having the infusion nurse come to work and do them there for the next 5 1/2 years. I had my own office and it never was a problem.The only big side effect was being tired so I would schedule them at 12:00 and they would be over by 4))pm and then I could go home at 5:00. ,I noticed the side effects seem to go away after the first few. Good Luck!!!!
Jackal8739
 
I got an interesting call from my insurance company today. I was asked if I would be interested in taking part in a pilot program to have infusions at home. It is currently being used in the most rural parts of the state where hospitals are far and few. The at home service will be less expensive than going to a hospital.Since I have had infusions for two years with no reactions I would be an at home candidate. I await a call from the nurse to see if I can do it. I am curious to find out more information.

Anyone have experience with at home infusions/
 
Dave,
I live in Cincinnati and I was on Remicade from 1999 until 2005. I had all my infusions at home and after 6 months I started having them at work. They deliver the supplies the day before and the nurse shows up for about 3 hours the next day. Never had a problem and
its much more convenient and much less expensive.Highly recommend it!! Good luck!
 
Well the first infusion is in the books. She did really well--mainly tired from the Benadryl. I think they slipped me some too b/c my tail was dragging. haha!! Also her GI dr came in & advised we are to stop all meds (Pentasa & Imuran) right now. I am glad that she is no longer chained to meds by mouth but kinda worried about stopping all at once before we see if the Remicade is going to work. Anyone else have any experience with this? Am I just worrying for no reason? (which happens quite frequently-ha!!) We go back in 2 weeks for the next infusion-woot woot.
 
Glad it went well. My husband loves the benadryl. He has a very good sleep :) 1st infusion is most important. If there are no reactions to this one, it's pretty much safe then. Good luck :)
 
Hello all--we have had two Rem infusions so far & are supposed to go for the 3rd next Friday. We did the first couple two weeks apart & this one should be 4 weeks later then we would attempt to go eight weeks the next one.

She started having loose stool & tummy ache last night--can this indicate that the med is wearing off? I have a call in to the GI but have not heard back yet. I made her go ahead to school but have worried about her all day. She has gained a couple of pounds & was feeling really good till this blip on the radar.

*As soon as I pressed send, the GI office called & said it should be ok to wait & get the infusion on schedule--just watch & call back if necessary*
 
Hi coolbeans, there will always be blips. Even on Remicade people still have "bad days".
Has your Daughter eaten a "trigger food" that can lead to problems. Insoluble fibre like mushrooms etc are a real no no for me. Or even rich sauces in home made Italian bolognaise can be too much for me & can give me problems that can last 36hrs or so.
Rgds
Grant
 
I just spoke with her & she said she didn't have any bathroom issues today--YAY!! She said her tummy grumbled a bit but we can live with that. I think that she just got something that didn't agree with her or at least I hope that's it. We have just let her eat whatever she will within moderation while avoiding known triggers--we will exercise a little more caution & see how it goes. Thanks so much. :)
 
Had Crohns for 37 years and apart from the initial explosion of illness I have never been as bad. I think I have had everything but now its fistula's, prolific discharge and awful tiredness. Now on Remicade since 21 Dec 2016 and just about to have my fourth infusion (first one at the eight week interval). It does not seem to be working. Can anyone provide reassurance that it can still work - everything is pinned on this.
I enjoy going to the infusion sessions as there are always people worse off than me - gets my perspective right but it's a hard battle in between.
Fingers crossed ...
 
Jambo1874, everyone responds differently to each medication, so it's difficult to say. For me Remicade has been a wonder drug, but for some it doesn't work at all. The best thing to do is keep in communication with your GI doctor and find a treatment plan that works best for you.

coolbeans, I agree with what Grant said in an earlier post. I've been on Remicade for about 10 years and while it has been a lifesaver for me, there are still bad days. I've found diet to play a huge role in how I feel. For me sugar and fats give me terrible pain. It's important to identify the specific foods that give you trouble and avoid those. They can differ greatly from one person to another.
 
Hi Jambo, maybe worth contacting your consultant to see if you can go 6 weekly. I did this last year, had to have a special blood test done before to make sure the dosage of Infliximab/Inflectra is the correct one.
Also with me my gut problems dimished to an acceptable degree, but the relief from fistula & crohns down below has taken a long time.
In fact on that ft I think i'm only just getting relief 15mths in.
Hang in there Jambo
Rgds
Grant
 
It took 6 months for Remicade to start working for me and now I am fine. I do have occasional diarrhea if I eat certain foods (popcorn, corn, milk, ice cream) but usually am OK. Keep seeing your GI doc, they can increase dosage or frequency if need be.
 
Thanks for all the advice. I am on top of the medics to make sure that they don't get complacent. I should pay more attention to diet as well and I have highlighted some - all of the good stuff 😄.
I was laughing at the problem foods for Krazycat - corn, popcorn are death foods for me as well.
Thanks again - it really helps
 
Two weeks of antibiotics, seton stitches for 5 months and now a big lump as well. Seems to be never ending. Didn't expect that. Sure is a wierd illness. 😄
 
Had Crohns for 37 years and apart from the initial explosion of illness I have never been as bad. I think I have had everything but now its fistula's, prolific discharge and awful tiredness. Now on Remicade since 21 Dec 2016 and just about to have my fourth infusion (first one at the eight week interval). It does not seem to be working. Can anyone provide reassurance that it can still work - everything is pinned on this.
I enjoy going to the infusion sessions as there are always people worse off than me - gets my perspective right but it's a hard battle in between.
Fingers crossed ...
If you think it isn't working it most likely isn't. Has your doctor measured the drug levels yet? Your concentration may be too low. TNF blockers like this are highly dependent on the proper dose. Some patients need a double dose and reduced interval (from every 8 to 6 or 4 weeks) for it to become effective.

Also, it is more effective in combination therapy. Common given with an immunosuppressant like 6mp, aza, mtx, or if not tolerated well, cellcept.
 
There is a test called "Prometheus" I believe. It isn't covered by most insurances and will run around the $250 mark, but it will tell you if you have built up an immunity to remicade and if your dosage is the correct amount. I have called them and they come to you for the test, but I am in rural america so they haven't gotten back to me on if/when someone is coming before my next infusion.
 
Hi LtHuff ! Just saying...I had that test not too long ago. I had blood drawn at my infusion center. My Insurance did cover it..thank goodness ! The blood goes directly to Mayo clinic to be tested. But ...it must be drawn before your infusion not after ! My Dr. did not know ( really ) and I had to repeat the test ! It showed that I have not developed antibodies however I have a very low amount of the drug in my system. My doctor has never suggested doing a thing about it ? I'm not having the greatest relief from my Crohns symptoms. I'm already two weeks past due now due to the copay I need to come up with .
I suspect my problem is that I need to have higher doses or fewer than 8 weeks between infusions. But I must pay over 900 .00 for my copay so how would anybody do that !
After much searching online I did find drug assistance that will pay two infusions and a little money towards the third. But what then ? Every year I must rack my brain ...Grrrr. This year nobody has funding it seems ! I'm on Medicare with a medicate advantage plan and most places won't help. Don't get the reasoning behind it ? Anyhow ..I wish you all well.. Gram
 
Hi Gram

Have you looked into remistart? It's an assistance program from the manufacturers of remicade. You need to pay $5 per infusion and they will cover the rest upto $20000 per year. It didn't help me though, because they cover only the cost of the medicine itself. And the hospital facilities charge way more!
 
Thanks for the reply Madhu ! But because I'm on Medicare..which is a federal program...they won't help. Isn't that just ridiculous ? I don't think there's anything out there I haven't tried. Like I said I did find one place that is going to give me enough to get me through 2 infusions plus a bit more. After that's used up I'll be back to wishing and hoping again. Before I started Remicade I was in the hospital nearly a month on high doses of steroids..even TPN for awhile.
I wish I could drop out of this " Crohns club " ! 😡 It's so maddening !
 
That sounds awful. I never really thought of those financial pressures in the US and on top of all the illness worries as well. I hope you are able to get through it
 

Lisa

Adminstrator
Location
New York, USA
That sounds awful. I never really thought of those financial pressures in the US and on top of all the illness worries as well. I hope you are able to get through it
One of the many ups and downs of healthcare anywhere......some things are a plus, others a minus....

On another note, had my infusion yesterday, today I feel very shaky and flushed...lower back was killing me too on the drive into work! Ugh...working a loooong shift due to the snow storm, am hoping I can catch a nap somewhere before my night shift begins!
 
I have mentioned it and then had Seton stitches inserted following that. Part of it might be posture related relative to sitting in funny positions as my left leg goes a bit numb now and again. I have my next dose of Remicade and a review on Wednesday this week. It is all a bit draining - very tiring. Thanks for the question.
 
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I would think your lower bowel might be inflamed ... hence the pain.
I am finally getting my Remicade on Wednesday also ! I hope after I get it I'll get a bit more energy.
I can't go much beyond afternoon until I need to crash. Anybody else suffer from extreme fatigue ? The word tired doesn't even begin to describe how I feel !
 
I would think your lower bowel might be inflamed ... hence the pain.
I am finally getting my Remicade on Wednesday also ! I hope after I get it I'll get a bit more energy.
I can't go much beyond afternoon until I need to crash. Anybody else suffer from extreme fatigue ? The word tired doesn't even begin to describe how I feel !
Fatigue is every common with Crohns and Remicade in my experience. I've had Crohns for 17 years and have been taking 50mg Azathioprine (initially 200mg daily) plus 700 Remicade. I've had 19 infusions so far - pre-meds added after the 10th infusion (650 mg oral Tylenol plus 50mg IV Benedryl) after I had a hive-like rash occur on my face and neck. After the 5th infusion, I was moved to a 6 wk schedule and after bloodtesting to check therapeutic levels last month, as of today, I've been moved to a 4 week schedule. Managing chronic illness is exhausting, but in my experience, making sure med levels are appropriate helps elevate some of the fatigue.
 

dave13

Forum Monitor
Location
Maine
Gram214 How did your infusion go? Yes,fatigue is a big factor for me. My first infusion was July 2014. I find when I am at the end the cycle(makes sense)I am the most fatigued. I seem to have periods of doing fine and all of a sudden I hit a wall. Energy gone. I find I am done in by early evening. I was fortunate to recently switch an evening work shift to days, that helps with my job. I find simple chores now take me quite a bit longer. I can still do them,I just need to give myself time.
 
Well, I've finally got around to joining this support group but it's looking like I will be leaving it soon!
I've had my second 8 week infusion after the loading doses and it doesn't seem to be doing a thing. I think I started in September so it's been at least 6 months now.

I also don't have any side effects which is a bonus and it may be doing something for the arthritis, but other than that I'm worse than I was on weekly Humira.
The levels have been tested and came back well below the minimum therapeutic value and because I had no real improvement during the loading doses my specialist thinks increasing the dosage to 10mg per kilo of bodyweight will be unlikely to offer any improvement although he's willing to try it. But because I'm likely developing strictures again he doesn't want to wait too long to avoid them getting worse.

I've exhausted the medication available in NZ so the next step would be medical trials or surgery to remove the inflamed part, around 30cm's.
I'm not keen on surgery as the disease has moved around already, I was initially diagnosed with UC when my entire colon was inflamed and have already had a resection to remove strictures in the small intestine which was when it became clear it wasn't UC.

I'm seriously considering the trial as it would be one that doesn't require infusions or injections, just a daily pill which would make it much easier to travel which I will be doing in the middle of this year for around 6 weeks.

Do you guys think I should try the increased dose first? Is there anything else I could be trying?
Does adding MTX this late in the game have any chance of stopping antibodies from developing?
It makes me seriously nauseous so I'd rather not but if it would make a difference I'd consider it. I/m allergic to Aza so that's not an option.

Is there anything else I could be considering?:sign0085:
 
Hi Layla. Sorry remicade doesn't seem to work for you. I don't have much answers for your queries, so I will wait for someone else to respond. My hubby is on the high dosage and it helped him for a year. He again went downhill last month, so now he is on the 4 week schedule. Sending loads of good wishes your way
 
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