Remicade Club Support Group

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Nini - I too take Remicade (going on 5 yrs) and recently added methotrexate - I have to say I definitely have side effects w/ the methotrexate but hoping the combo does the trick!
 
Nini..........my BC/BS pays for my Remi every 5 weeks, but I also have Medicare that is primary. The talk around this part of the country is going towards cannabis, and it seems to help a lot of people. I'm kind of ok on my meds for now, but am watching the research being done on medical marijuana, and won't hesitate if the Remi stops working. Medically it is legal in my State, I don't know about Florida. Hope you feel better soon.
 
Had my second infusion of Remi Monday, slept all day yesterday, today I have to say I feel pretty good. Went to work, plenty of energy, still have a bit of a headache. Most importantly joint pain minimal with Tylenol only and I think, although Im afraid to say it, fistula is smaller! No drainage and no pain!!
 
So glad Remi working for you guys. Been on it a year now and not in remission but doing much better than without it. Definitely solved my fistula issues. Doc just added Enticort to see if that helps. Setting up consult with IBD Clinic at University of Maryland Hospital to get their input. Taking Topamax for headaches, but also experiencing joint pain and memory fog still.
 
Hang in there and don't give up. A year ago I thought life would never be normal again. Entocort took care of a lot of my symptoms. All but fistula and joint pain. Remi will hopefully help that. Just have to keep at it til they figure out the right combination. Stay strong.
 
I haven't found any med to help with the memory issues - So currently seeing a cognitive behavioral counselor who is helping me with memory strategies. It was becoming a true problem in my marriage, so I'm glad to have some concrete strategies in place!!
 
Kristi- I hope it works for you too. Im really tired, joints are killing me yada yada. I hope it works for me too! Oh and my rheumy said he has no problem writing the port but he said he usually only does it if they cant get an iv in. And he said since my immune system is now tanked it would be easy to get an infection from it since its a plastic and metal thing living in my body haha. He told me to really think about it. And if I still want it hell sign off on it. Lol guess ill have to think!

@judithc- you lucky dog lol he said if it was up to him he would bump it to every 5 weeks but he said he cant so I have to deal with 8. Im waiting to hear back from the ssi people for disability and medicare as a supplement insurance company. I wish you luck with the cannabis. If you choose that. My mom wants me to try it but I dont really want to lol. Not my thing.

@max- yay!! Im happy you have energy after two days. And that your joint pain is taken care of by Tylenol! Thats awesome. Im taking gnarly stuff for mine like half an oxy because everything is hurting like you wouldnt believe. Lol im also really glad about your fistula. Thats really awesome. I really hated mine. And im glad its gone. Hoping yours clears up fast! :)

@write2bheard- im on it and not in remission either. No where close to it. But I know if I wasnt on remi id be worse. Im also on entocort. (Love it!) Its really great. The remi fixed my fistula issues too. It seems to work really well for that. I hope you find a combo of things to help you get better. Its a challenge but being sick takes a toll after awhile. can i ask what topamax is? And joint pain is a toughy and memory fog, I haven't found anything for that either lol.
 
@nini - yes I understand the concern with infection! I'm on remicade and methotrexate so I too have no immune system!! As for the port, once it's fully healed the only infection risk is when they needle in, which is done as a sterile procedure anyway. I wouldn't recommend the port tho unless you really need it!!
 
High five for the no immune system club lmao :highfive: amd yeah I hear ya. Im sick of fighting to get ivs and bloodwork and when in the hospital going through ivs like water because they leak really fast or infiltrate or blow trying to get them. Its very painful needless to say. He understands that but hes still concerned giving me one just because yes they try a thousand times to get an iv they do end up getting one. So I guess ill wait it out. And ponder it. Lol it just seems easier and a non hassle to have have one you know?
 
Nini - I was 100% in same boat - and my thought was this - we struggle enough with all the pain and hassle of crohn's, why suffer with pain and hassle with IVs if that's something I can control?
 
We have completed the 3 loading doses of Remi for my son & are now waiting out the first 8 week maintenance dose. Too long of a story but the ins co won't let us bump up the dose because it's our first 8 weeks...BS...but whatever.:ybatty:
At 4 weeks it was like flipping a light switch and he went from being ok to being in an awful flare. This literally happened overnight. (They started him on prednisone...waiting to see if that works)
Was wondering if this happened this way to any of you?
And what got you on track, increasing the dose, shortening the interval, or both?
 
Gmama, my son C, was the same way. He did great during the loading doses, the turn around was truly amazing. But once we started the 8 week stretch he could only make it about six weeks. We first shortened the schedule, then we had to up the dose then finally added methotrexate. Now he goes every six weeks at the max dose and takes 7.5mg of MTX a week.
 
Gmama and clash. Mine also stops working soon. It usually lasts 5 weeks or if im lucky 5 1/2, 6 but its usually around 5 after that I flare right back up. I camt move mine up because of my insurance co
But I had the dose doubled to 10mg which hasnt helped but what can you do
Lol I got mtx added tuesday so maybe that will make it last a little longer
I wish your kiddies the best of luck with it
 
It's just so strange to me that it stops so SUDDENLY.
This is why I am always worked up...I'm in a twist on bad days because they are bad, but then I'm worked up on decent days because I'm just waiting for something suddenly to be bad! I hate the wretched disease!:ybatty:
I know all of you do too, of course
 
I ended up in hospital after first 4 week dose so they doubled my dose and kept me at 4 weeks. Finally moved to 5 weeks after about 9 months but can't make it to 6 weeks. Doc just added Entocort and I'm scheduled for consult with IBD specialists at University of Maryland Medical Center to get input on a plan that might help me get to remission. Between stomach and joint pain, and memory fog and fatigue I feel like life is passing me by. Hoping they figure something out. I feel for those who have to go without treatment because of insurance restrictions. There ought to be a law against letting patients suffer to save a little money.
 
Just scheduled my first 4 infusions. First dose will be on Valentines day - i figure its a treat to myself. I will be getting them at the hospital i work at so I will go right after I get off my shift at 8am and will most likely sleep through them since they said they will give me benadryl and tylenol pre meds. I am nervous but excited since I have been in this flare since Sept so I am crossing my fingers this is my miracle drug and I finally start to feel better. Glad to hear it has worked so well for so many of you! :)
 
Completely confused by what my body is doing. Can't decide whether I am improving or not. Was better after 2nd infusion. GI said I could start cutting back on Entocort. Have been taking 6mg since Monday. Joint pain, abdominal pain, and totally constipated. Actually had to take laxative. Was really worried about possible obstruction. Went back to 9 mg of Entocort and 2 lortab today and feeling better. Very frustrated right now.
 
Tomorrow is my first day of Remicade... Can anyone tell me what to expect? I'm excited for the possibility of remission but very worried about the side effects. I'm also very worried about them getting an IV started, I have very small veins and they always blow. Just thinking of all the things that can go wrong I guess.
 
Good Luck CLCH87! I have had my first 2 infusions. I would suggest you pre-medicate with Tylenol in case of headache. They will most likely give you Benadryl when they do your infusion. Everybody seems to react differently but headaches seem pretty common from reading other posts. The best advise anyone has given me is to take a day or two off to rest afterwards. There are all kinds of other side effects that might occur from body aches to shakes but you may have no side effects at all. My first infusion mas much different than the second. I was given Solu-Medrol with the second and it helped with all the side effects. Just make sure you communicate with the nurse doing the infusion so they can get orders to give you what you need. Get comfortable and watch a movie or read a good book.
 
Good luck CLCH87, make sure you drink plenty of water before hand to plump up your veins, ask for pediatric needle. For my son the fatigue doesn't hit until the evening, he is bouncing off the walls until then. He has only had 2 infusions so far we go for the third loading dose this month. He had a headache with the first one and nothing the last one. He does not do any premedication. I was terrified of all the side effects before hand but it has made an amazing difference for him and so far no side effects.
 
CLCH87 - I'm like you - small veins and they hide away when I'm under stress. My nurse suggested along with drinking water, to eat a bag of chips or something salty to help hydrate. Also I have my infusions every 8 weeks and find the 3 hours the most relaxing time. I read, snooze, watch TV and don't have to answer my cell phone or think of anything. Just make sure they infuse as per your doctors orders - they infused me once in 1 hour and I was sick as a dog. When they went back to the 3 hour infusion, I'm fine and feel good. The next day I'm Supergirl - full of energy, hungry, no pain or cramps.
 
Thanks everyone! I'm getting ready for my appointment now. My friend is going to drive me just in case I don't feel well afterwards. I've been drinking a lot yesterday and today to try and plump up my veins. I'm getting more and more nervous. Hope I don't :yfaint: ha ha!! I'll let you guys know how it goes :)
 
The infusion went well. I had one scary moment where my heart beat was in my ears and I felt so sick with a racing heart rate. They slowed the drip and it subsided. I got home and was so tired. I've slept most of the night and I'm going back to bed now. My head is pounding. And I'm sore. But it could be worse. Thanks for the support everyone :)
 
Had my 2nd infusion for Remicade yesterday with no side effects apart from tiredness which has carried into today including going from being too warm with hot flushes one second to being too cold the next. Still getting abdominal pain and cramping, which I'm a bit sad about as I thought I would feel a lot better today as I had after the first infusion, but I guess the difference was I was in hospital when I got the first one done and was in pretty bad shape. Got my 3rd infusion in 4 weeks time and then it'll be reviewed to see if I can continue on it, but my IBD nurse feels pretty confident that I'll get to stay on it and to be honest, I hope I get to as well as even though it's not quite kicked in yet, I feel quite confident that this is the drug thats going to push me into remission.
 
Had my first Remicade treatment today. It went well overall but I am just exhausted and slept for several hours after I got home. Does anyone else feel that way after treatments? Still worried and nervous about this treatment route b/c of potential side effects.
 
I think most of us are exhausted for the next day or so. Some of us get headaches, body aches, etc ... Great that you haven't had that yet. I'm really worried about the risks and side effects too but you get to a point when you decide you have to try it anyway. Good luck!
 
CLCH87- Hang in there. My first infusion was quite the experience too. Didnt get the increased heart rate but the headache and body aches lasted for days. Second dose was better with Solu-Medrol. Don't hesitate to call you doc for meds to help with the side effects. Fiorcet works great for the headache.
 
Thanks Maxwelljax. After I made my post I read more that others has written and it seems like exhaustion is typical. Docs didnt warn me about that! They gave me tylenol before my infusion but I do have a faint headache now. Not terrible though. Thanks for the support and I wish you luck as well.
 
I had my first Remicade infusion yesterday. Last time I had remi on 2007 so this was a restart. Some sharp headaches during infusion, felt like hangover afterwards but nothing else! Today feeling almost normal, somewhat tired though. I have no symptoms at the moment but remi was started due to inflammation and abnormal swelling in ileum and colon found on colonoscopy and MRI.
 
Is there anyone here who is in remission and still on remicade? After finishing my loading dose I had zero symptoms. My doc said I was in clinical remission and after some time on the meds he'd do another scope to see if I was in microscopic remission. Today I had my first dose after the 8 week waiting period and have had no symptoms at all. This of course is great and I'm so thankful but at the same time, I'm putting this poison into my body for fear of building up antibodies? When I brought it up today with the infusion nurse, she simply said doctors frown upon stopping treatments and you're basically on this for life. I'm just having a hard time accepting this and it really got to me today.

Juuh, it looks like you were able to restart. I'd be very interested in your story! And anyone else that has successfully or unsuccessfully restarted.

It bothers me that the disease can be so unpredictable. Maybe I won't flair for another three years but I have to continue these treatments?
 
Long story short, I was diagnosed in 1999, started with pred, in 2000 started Azamun, got rid of pred pretty soon (and been off since!). Searching for correct dose with aza, changes in lymphocytes lead to current dose 125mg. Scarring in colon lead to problems and I was told to undergo surgery in 2003 (or something, can´t remember anymore) I did not want to go and tried to cope with blockages and problems for couple of years. 2005 had elected surgery with 2 resections at once. Complications forced me to stay in hospital for 3 weeks but after all it went really good.

Late 2006 or early 2007 it was back, I had maybe less than one year of Remicade which fixed everything. Got off from Remi, stayed on Aza so I was almost free from symptoms over 4 years. Then small problems with blockages maybe 2-3 times a year (every time due to something I ate or did not drink enough water, so I was dehydrated). And now, late 2013 inflammation in colon, some strange "mass" in MRI and I am back on Remi, still not sure what that mass is, could even be tumor. First loading dose of Remi went fine. 2 days after and something is going on in my bowel where that mass is, don´t know yet if its good or bad, not hurting though! I am allergic and have asthma since I was a child, so I am on inhalers for that too.
 
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First off, I can't say how happy I am to have found this forum!

I am going in for my first remicade infusion in two weeks if everything goes through okay with my insurance. I'm very nervous about how I'm going to feel afterwards and whether or not I'll be able to work the following day. Only time will tell I guess!

I was diagnosed May of last year (2013) and have tried Budesinide but stopped due to the side effects I was experiencing. I also tried 6-mp but as it turns out I am allergic. Now I'm on lialda which works better than nothing but isn't getting me to remission. Next up is the remicade. I'm really hopeful that this will work but still really nervous!
 
Xash08x I would def suggest you take the next day off to rest. Pretty much everyone has said they need it. I'm curious about your side effects with Budesinide. I've been on it for over a year now and it has been helpful but I have had some weird things happen but not sure what has caused it.
 
Hi maxwelljax! With the budesonide I had first and foremost significant weight gain (about 20lbs in 4 months). I also had issues with my legs and feet cramping really bad multiple times per day. I had issues with feeling acidy in my stomach. In general i just felt worse on it than off.
 
That's really interesting. I've gained quite a bit of weight too. About 40 lbs over the last year, and I don't need that at all. I'm one of the few with severe Crohn's that's overweight. Dr keeps telling me it's possible but most of it is absorbed in small intestine so he doubts the med is responsible. But I have lost quite a bit of my small intestine from surg so I'm not buying it. I want off of the stuff. I started cutting after 2nd remi treatment but had problems and had to go back up to 9 mg. But after next infusion I'm going to try again. Steroids long term can't be good no matter how much is absorbed by small intestion. Of course the same can be said for putting remi in your veins but we won't go there lol. My other side effect seems to be visual but it isn't constant so who knows. I switched to taking it at bedtime and that's helped vision issues during the day. Never a dull moment...
 
Yeah I'm a small woman so 20lbs was huge for me. And I've lost about half of it since coming off in Oct without trying so we definitely attributed it to the steroid. I didn't experience any vision issues but everyone is different. Hopefully you'll be able to come off of it soon!
 
I really appreciate finding this club! I had my third remicade infusion on January 30 and I'm finding muscle and joint pain after each infusion as well as headaches - like a wine hangover :). I've not experienced any benefit from the remicade yet. I'm still flaring and am finding that I'm now having bladder issues. Hoping that the remicade kicks in soon. I haven't had a chance to read all posts in this club but I'm hoping to get a sense of how long I should expect it to take before I start to feel some results.
 
Hi guys ~ I am also glad to find this group. I can't sleep ~ I am getting my first dose of Remicade in the AM and I am nervous! (After a month in the hospital, it was either Remicade or surgery). It is helpful to see everybody's side effects. I will cancel my plans tomorrow.
Has anyone experienced hair loss with Remicade?
I lost a bunch with Imuran and was wondering if I will experience another round.
Thank you,
Jenn
 
Good luck today JMDCA! No hair loss for me. I think I did read 1 post where there was hair loss but only 1 so hopefully it's rare. I hope you get the quick response many of the others have experienced.
 
JMDCA said:
Hi guys ~ I am also glad to find this group. I can't sleep ~ I am getting my first dose of Remicade in the AM and I am nervous! (After a month in the hospital, it was either Remicade or surgery). It is helpful to see everybody's side effects. I will cancel my plans tomorrow.
Has anyone experienced hair loss with Remicade?
I lost a bunch with Imuran and was wondering if I will experience another round.
Thank you,
Jenn
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I was actually losing my hair before treatment because I was so sick. Everywhere I turned there were clumps of my hair! But once I started remicade I felt so much better. I just had my forth infusion and my hair is growing back.
 
Getting my first infusion of Remi tomorrow after I work overnight tonight. I am very nervous about side effects, reactions, and if it will help my flare finally get into remission. I will be getting off my shift, going down to the cafeteria to get breakfast then heading to the infusion center at my hospital. I will be tired after work anyways so I figured I will probably sleep through most if not all of it since they will also give benadryl/tylenol before the infusion. Any advice or tips? My mom will be with me for the first hour then she has to leave but a friend wants to come keep me company.
 
Relax and enjoy the 2 - 3 hours down time. Not everybody has a reaction - I don't have any Benadryl/Tylenol before mone and I snooze while being infused. I feel rested afterwards and the next day feel great. Good luck!
 
Hi guys! Thank you for the feedback! The morning of my first Remicade infusion, I woke up with flare pain and blood. 24 hours after the infusion, the pain has dissipated. I think Remicade was a good decision!!!
LNS87, yes enjoy the downtime! Bring something to drink and relax. I also was given Benedryl and I fell asleep. I am optimistic! Good luck! Jenn
 
Hello everyone. My name is Andy - I'm 34 years old, and I was diagnosed when I was 19 back in 1999. I'm at the point where Remicade is starting to look like an option I am going to pursue, so I just found this forum and joined to see what kind of information people out there are sharing. It's good to see a lot of people on here talking about their experiences. I hope to learn a lot from everyone and be part of a supportive online community. Cheers!
 
Welcome Andy! This is a great source of information and support.

I've been on Remicade for 2 years now and it is a miracle drug for me.

Good luck and take care.

Alison
 
Thanks, Alison. That's good to hear! I have a unique situation myself (well I guess everyone's is unique, ha!). I was initially diagnosed with UC in 1999. I did the regular rounds of prednisone, Asacol, Sulfa, etc. Nothing ever helped except high doses of prednisone, which obviously wasn't sustainable. So, after three years, I had my whole colon removed and had the J-Pouch surgery, if you are familiar. So ever since then, I've taken no medications. I have always felt very well except I have had a fistula and abscess problem reoccurring in the same area just outside my anus/rectum area into my actual butt cheek. Sexy, I know, but as we're all in a similar boat, I am not embarrassed to share details, haha! . It hasn't affected my pouch yet, but my doctors are to the point they believe remicade will be the best option to solve that problem. Other than that I have zero major symptoms/problems. I have had the abscess drained three times in the last 12 years since the pouch surgery. And my problem here is that I still have a little bit of my colon/rectum left that was good enough to keep and reattach my small intestine to during the surgery. That's the area that has always remained inflamed and the origin of the fistula/abscess problem. My doc says all they have to do is treat that one problem area, and it should solve my problems. Does that make sense? Does anyone else have a similar story or problem? I know many people with Crohn's do not have the J Pouch, but as I mentioned, I was initially diagnosed with bad UC and only after surgery was it changed to Crohn's. In any case, my colon was so bad, it had to come out no matter what.

I guess I am sold on starting remicade, but of course all the information and data on side effects (cancer, infections, etc) are giving me pause. Plus the costs and the probability that once I start it, it will be a life long commitment.

And for all I been through - a couple of major surgeries and outpatient procedures, I still HATE getting an IV, haha!
 
Update: first infusion went really well. No issues and have been feeling great so far, just a little tired. The infusion center was really nice, i had a big window next to me, my own tv, plenty of snacks, homemade cookies and cupcakes for Valentines day, and two therapy dogs that stopped by. I also had my mom and a friend there to keep me company and I dozed off a few times. I realized tonight that since the infusion i have had no pain which is a first in months, and went from 6 loose bms yesterday to 1 solid bm today already. Did not expect to see positive effects so fast, but hoping its a good sign and that it continues! :)
 
I have some questions and just wondered if anyone can help! I was put on Remicade after a bowel obstruction that landed me in hospital for 9 days last June. Remicade put me into complete remission but a week after my Oct. infusion I started getting joint pain.....bad joint pain, which I've never had before (I've had Crohns for over 30 years). So my specialist convinced me to continue, with pre-meds before the infusion. I got worst. I have such bad joint pain in my knees, feet, wrists, hands, shoulder. I discontinued Remicade (Dec 2nd was my last). Anyhow, I figured by now the joint pain would be better. I think my knees are better but my hands the last few days are worst than ever. Does anyone know how long it takes for the joint pain to go away, once you've stopped Remicade? My joint pain does not move around, it's always been constant. I was having hope because my knees are somewhat better and this is where the joint pain began, but I'm worried now because my hands are worst. :(
 
So sorry to hear about your joint pain. I had joint pain before I started Remicade and during. My GI finally sent me to a rheumatologist who said it was Crohns based joint pain not caused by any drug. I guess Crohns can cause joint pain as well as bowel problems. She finally got me on Sulfasalazine along with the Remicade. It has pretty much taken all the joint pain away.

Have you seen a rheumatologist? I would suggest that you ask your GI to send you to one.

Take care!
 
I haven't seen a Rheumy yet just because I was sure it was Remicade that caused the joint pain since I never had joint pain before Remicade!! But I see my specialist in a couple of weeks and will get him to refer me!
 
Update - feeling like the remicade has finally started to work. Started feeling better this past Wednesday. Inflammation is reduced, pain is not as bad, still getting some spasming but for the most part feeling better than I have in a year and a half! Oh happy day :)
 
Yesterday was my second and last Remicade infusion :cry: We (my mom and I) went in and about thirty minutes into it I got super hot, my face and tongue began to swell, and I couldn't breathe. They stopped the infusion and gave me the choice to try again, so I did. After about thirty minutes of waiting my IV had stopped working so it took eight more sticks and they finally got a second IV started, after five minutes I had the same reaction again, they gave me solu medrol and it stopped (I had benadryl before we began the infusion). I was ecstatic!! Well then it got worse, after another half an hour I got so cold, I had the chills so bad that the shivering was painful, I spiked a fever of 103, at this point my doctor gave me no choice and said I had to stop, even though I was insistent that I wanted to keep going, I could tough it out if the medicine would work. So now I'm back at square one. I've already done Pentasa, Entocort, Prednisone, and Humira and my doctor said cimzia is a no go because of the reaction with Remicade. He mentioned surgery. I'm just wondering if anyone else has experienced this? I feel desperate, I was willing to keep going after I felt like I was at death's door, three times. Just curious if anyone has any suggestions anyone can offer. :sign0085:
 
OMG that sucks! I haven't had that reaction to Remicadee but I am allergic to penicillin and that's the same reaction I got to it. Drug fever and all. Sounds like you've developed an allergy to Remicadee. I know my GI doc mention several things that are in clinical trials that are looking promising that I could try if remi doesn't work. But I don't know what those things are. Talk to your GI and see if he does.
 
can anyone tell me where they will do the IVs when I go in for my first infusion? will it be forearms, hands, wherever they find a good spot, other? thanks!

and they will always draw blood for blood work every session, too, correct?

thanks!
 
I've had 2 infusions and both times it was anti-brachial vein (inside elbow). That's a large vein and for me the most reliable. Since the infusion is only 3 hours it's not a big deal. Every place could be different but if you have a vein you prefer def tell them. As far as labs go I had labs a week or so before my first infusion. No lab before second but did have them drawn after seeing GI doc a couple of weeks later. But that's a normal thing for me every couple of months anyway. Again every place might be different and your doc might routinely order.
 
Could it be?? 4 days since my first Remi and I've had almost no pain and only 1 normal BM per day...this is coming from having constant abdominal pain and 4-6 loose BMs daily so huge improvement already! Eating pretty bland/careful/safe foods but it seems to be working well! Now i need to keep my fingers crossed that I do ok with the future infusions and it keeps helping....
 
Well Remicade restart was not success for me after all. Second dose yesterday and it started out fine, some tingling on my arm but nothing special. It got to a point I felt my arm was getting hotter and all of a sudden, after 20mins I started to feel pressure on my chest. I told the nurse I had difficulties with breathing and she stopped the drip. It got worse, almost lost my consciousness, had blurry eyes, intense pain on my chest and hard to breathe. She gave me 100mg cortisone injection and some oxygen and it helped... Had talk with my doc and due to my asthma and allergies and this reaction, continuing Remi seems to be out of question for me. I start Humira instead, hope it helps!

This is not meant to scare anyone. This was my second try with remi, in 2006-07 everything went smooth. My doc told me that remi was not as pure back then as it is now. Nowadays drug itself is much better and easier to tolerate. This could be one reason why its hard to restart especially if its been a long time since first infusions when it contained more of the bad stuff that causes these allergic reactions.

In my hospital they have a policy that you dont normally get pre-meds. I took some antihistamine at home before the drip but no solumedrol etc. in hospital, they only gave it to me first time when restarting. Your body is supposed to tolerate it without. They told me that it could be done (as I have read from this thread) but its not the best way to go.
 
CLCH87 said:
Yesterday was my second and last Remicade infusion :cry: We (my mom and I) went in and about thirty minutes into it I got super hot, my face and tongue began to swell, and I couldn't breathe. They stopped the infusion and gave me the choice to try again, so I did. After about thirty minutes of waiting my IV had stopped working so it took eight more sticks and they finally got a second IV started, after five minutes I had the same reaction again, they gave me solu medrol and it stopped (I had benadryl before we began the infusion). I was ecstatic!! Well then it got worse, after another half an hour I got so cold, I had the chills so bad that the shivering was painful, I spiked a fever of 103, at this point my doctor gave me no choice and said I had to stop, even though I was insistent that I wanted to keep going, I could tough it out if the medicine would work. So now I'm back at square one. I've already done Pentasa, Entocort, Prednisone, and Humira and my doctor said cimzia is a no go because of the reaction with Remicade. He mentioned surgery. I'm just wondering if anyone else has experienced this? I feel desperate, I was willing to keep going after I felt like I was at death's door, three times. Just curious if anyone has any suggestions anyone can offer. :sign0085:
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I would see if your doc is willing to let you try again with premed of Benadryl and hydrocortisone IV. My reactions have not been as severe as yours, but I'd get super hot, nauseous, extremely dizzy and light headed feeling like I was going to pass out, and short of breath. Since adding the combo of IV Benadryl and hydrocortisone, I have no longer had a reaction. Especially since it was only your 2nd treatment - remicade is a very strong med so it takes some peoples bodies a few treatments to "accept" the medication. Good luck!!
 
Hey everyone! I was wondering if someone here could help me. Since we are all on Remicade I feel like we can relate. I just got my sixth infusion a couple of days ago and I have had a persistent headache since. I know that's a common side effect, and I've never had any sort of reaction to the Remicade. I'm just getting really paranoid now that it hasn't let up and I'm becoming discouraged about this choice in medication, but its the only one thats helped me. Have any of you experienced this? The headaches?
 
I have only had two infusions and had headaches both times. So far, the first one lasted fir 2 days, the second one for 3 days. However, they were lightweight compared with once a week Humira. Those lasted 5 days.
 
I have never had a headache that was bad or lasted days, but I do find it important to make sure I am well hydrated before I have an infusion or I can get a mild one in the evening after. I usually drink a few pints of water the day before and on the day.
 
It is quite possible mine are due to dehydration. By my second infusion water would come out as fast as I could drink it. Now that I am keeping liquids in it will be interesting to see if I get another headache.
 
My doctor took me off Remicade. That was a few weeks ago. I am on none of the big guns right now. I am supposed to me with my doctor next week to discuss the next step. How could it affect me not being on any of the big guns?

2
 
Yes I experience persistent headaches since starting remicade almost 5 years ago. I now take a headache preventative, neurontin, because I was never able to shake my headaches! Good luck!
 
Neurontin would definitely be better than the Fiorcet I keep taking. I've only have 2 infusions, #3 is on Monday. Really not looking forward to the headache. Seems like they last forever. I see GI in a couple of weeks. Will ask about it if h/a is as bad this time.
 
Had remi infusion #3. I am whipped! This one was a bit different. Lots of sharp burning, which was new. Not like torture but very different. Arm ached throughout but IV didn't infiltrate. Headache and body aches in full swing. Happy to be off tomorrow. Not planning on doing much.
 
I had Solu Medrol and Benadryl so I don't know why it was different this time. But I never cease to be amazed by this disease and that drug so whatever. I'll roll with it.
 
Has anyone had the Remicade help with the symptoms, then to find out from colonoscopy that inflammation was still very active? We thought this was the best drug ever until last weeks colonoscopy (6 months after starting the Remicade). Hubby's results were awful!! During those wonderful diarrhea free months, we thought woo hoo BEST drug ever. In the short time he was on the drug his entire colon filled with polyps of all sizes, some so large that they could potentially cause a blockage. GI doc said there is no way to effectively screen for cancer... leaving us with the option to try another drug for 6 months or have a permanent Proctocolectomy with ileostomy. Still totally shocked that this all could happen in such a short period of time. Besides that the polyps have travelled into the small intestine. Colonoscopy 2/10/14 and now surgery 3/19/14. Boo!!
 
Well, we'll know tomorrow. I've been on Remicade for 2 years now and thought it was working. I have a colonoscopy tomorrow so we'll finally find out for sure if it's working.
 
Lisathegirls, curious to know if the blood work that was done during the time on the drug showed any inflammation. I have had my 4th infusion and my doctor said my blood work came back with none.
 
Had my second infusion today, it went well! First IV site infiltrated so we had to move it but that was before the actual Remi was going in, just saline. I feel good still, just tired but I also went after work and I worked 6 out of the last 8 nights so that may be why :) hope everyone else is doing ok!
 
Well, the Remicade works for me. Colonoscopy was great - some scarring, but no inflammation. A couple of ulcers but those might have been caused by some antibiotics I had to be on a few weeks ago. GI is very happy. I'm just glad it's over and that the Remi is working so well. I hate Colyte - I'm never using it again. Got permission from my GI to use Pico-Salate next time.
 
Lisathegirls, yes, I've been dealing with that too. I'm about 8 months in, and thought it was working because I've been feeling much better—a lot less diarrhea. But I do have a fistula, and that hasn't closed up like we hoped. At the colonoscopy they found that I still have inflammation and the narrow spot in my intestines hasn't improved. Now it's looking like I have another fistula (or it's just an abscess...I don't understand how that works exactly). They're adding Imuran or 6-MP in hopes that will make the Remicade more effective.

I've also been having headaches, though they don't last more than a day a week or so after each infusion. I reported it to my doctor, and they didn't seem all that convinced it was a side effect of the Remicade. I thought it might be because I've never had them before. They told me to see my primary care physician because there are lots of different kinds of headaches. That was a little frustrating to me. I haven't done it yet, because the headaches are usually over by the time I could get an appointment, unless I go to Urgent Care, which seems like overkill. Tylenol usually gets rid of it. I go to enough doctor appointments!!
 
Aloe, my GI doesn't agree that ANYTHING is related to my Crohns or the meds. Bone/muscle pain? something else, no referral. Headache? something else, no referral. Jaw pain? something else, no referral. However, my PCP told me headaches are directly related to the Remicade. An anesthesiologist told me that my jaw pain is directly related to my Crohns. My ophthalmologist told me that the specific cataract I had was directly related to the meds too.
 
JudithC said:
Aloe, my GI doesn't agree that ANYTHING is related to my Crohns or the meds. Bone/muscle pain? something else, no referral. Headache? something else, no referral. Jaw pain? something else, no referral. However, my PCP told me headaches are directly related to the Remicade. An anesthesiologist told me that my jaw pain is directly related to my Crohns. My ophthalmologist told me that the specific cataract I had was directly related to the meds too.
Click to expand...

Wow! This is like dealing with my GI!! He has done the exact same thing to me time and again. I went around him to my family doctor who sent me to a Rhumatologist (who is insistent that joint pain is infact directly related to IBD) she ran more tests then I've ever been through in my life! During the testing she even discovered a tumor in my colon and that my kidneys were riddled with cysts from my medication. She gave me a referral to another GI for a second opinion. Go to your family doctor, they will send you where you need to go.
 
Angie's Mom, oh I'm relived to know that I'm not going crazy or something, and that someone else has encountered similar problems with GI. At this point I refuse to see him more than the once a year necessary to update my Remicade, unless I'm very very very ill. I'll follow your path and ask my PCP for the rheumatologist referral. Thanks so much for validating my feelings. That alone makes me feel better.
 
JudithC, glad to help! As far as I'm concerned, we need to advocate for ourselves. Apparently it's asking too much for some of these doctors to actually be concerned or us beyond their own specialty! ;)
Best of luck to you, I hope you get all the answers you need!
 
Alrighty, I'm starting my first Remicade treatment a week from today, March 10th. Then the second treatment two weeks later on the 24th. Any tips, advice, etc. for someone going in the first time and what to expect during the treatment and the following days? I'm worried about being fatigued at work the next day, etc.
Thanks!
 
Good luck! Bring something to read or listen too! You'll be there for about 3 hours. So it's boring but hope it works for you.
 
I know this sounds slightly paranoid but does anyone else worry that when they bring the IV bag that we aren't getting the right dose or even Remicade altogether. I am sure mostly it's fine but I hate that it's in others hands. It's expensive meds what if they steal it or don't mix it properly.
 
You're not being paranoid. I've had the same thoughts. However with the Remicade, it has to be kept at such low temperatures that they'd have difficulty transporting it. I watch the nurse do my dose most times.
 
I have been in remicade for maybe 3 years. Treatment has been between 2-8 weeks. My symptoms have never gone away. So I decided to stop eating gluten.
After about two weeks it seemed to really help, but my dr thinks in wrong and it's just the remicade working. How do I know if it's the remicade or gluten free or both? How do I mix natural healing through food with modern medicine. I'm so lost in this fight!!!
 
rrhood1 said:
You're not being paranoid. I've had the same thoughts. However with the Remicade, it has to be kept at such low temperatures that they'd have difficulty transporting it. I watch the nurse do my dose most times.
Click to expand...


I don't see them mix anything I just get a bag that looks like saline and says Remicade on it. It's good to know that it's hard to transport.
 
My infusion clinic gets my dose (1 large tablet in a bottle) and it has to be kept between 2 & 8 degrees C at all times. My pharmacy delivers it to the infusion clinic in a special refrigerator and it's kept in one at the clinic. My nurse mixes it with saline just before she infuses it.
 

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