HealingWell
Search Close Search
☰

Just started Remicade (just diagnosed/Crohns)

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/19/2018 10:22 PM (GMT 0)
Hello, I am a new member here who was recently diagnosed with Crohns and a lot of patchy ulcerations. I had my 1st remicade infusion 2 weeks ago. Has anyone had chest pain or heart issues? Also shortness of breath? Trying to figure out if this is from remicade or another issue going on.. Thanks

Post Edited (joejo) : 10/20/2018 9:47:36 AM (GMT-6)

Posted 10/20/2018 11:03 PM (GMT 0)
Welcome to Healing Well! I never experienced any of the symptoms you describe while on Remicade.

Allergic reactions do occur with Remicade but mostly at the time of the infusion? When are you having the heart issues and shortness of breath?

Getting diagnosed with Crohn's disease can come as quite a shock. It can cause anxiety in some people as they contemplate what lies ahead in terms of having a lifelong disease. Have you ever had anxiety issues before? If so, your diagnosis and beginning Remicade could have caused your anxiety to ramp up. Anxiety can cause the symptoms you describe.

Whatever the possible cause, you need to have it checked out by your primary care doctor or GI.
Posted 10/20/2018 11:20 PM (GMT 0)
Thank you Ides for your reply. I do have a defribulator and heart disease but felt fine until a week after the remicade.. The feeling is usually at rest but at times when I am doing things.. My stress test last year was fine.. I have also wondered if I have anxiety but don’t really know it.. I went around in circles for awhile with CT Scans and different doctors etc. I wasn’t diagnosed until recently after 19 months and I tried not to look at the side effects of remicade but the nurse doing the infusion mentioned chest pain was a side effect. She also explained how remicade is actually includes some type of mouse protein.(didn’t need to hear that) I am going to a cardio doctor this week to get a checkup.. Just wondering if remicade is affecting my heart… So far remicade hasn’t done anything for my crohns. Seems like I get more answers by talking to people using the same medicines then the Doctors who don’t… Thank you again for responding.. . Thought it happened while young. My 2nd infusion is Monday. Thanks again
Posted 10/21/2018 12:51 AM (GMT 0)
Are you getting premeds before your infusion? Are you still receiving the loading doses? The premeds will help with some mild side effects, and as far as the effectiveness of Remicade goes, everyone is different in that regard. Some get instantaneous improvement, while for others it can take a few infusions.
Posted 10/25/2018 2:04 AM (GMT 0)
How did they found the crohns and where ? and what is your symptoms was. Im looking for some answers please
Posted 10/26/2018 8:30 PM (GMT 0)
Hi, they finally found it by doing a colonoscopy. He showed me pictures and the report saying he "thinks" it may be Crohns.. I had about 8 different bipsies and a few types of blood tests down and it confirmed that it was. My symptons was always constant "Pelvic" pain right where you wear your belt. It would feel hard and very tight like I was going to burst. (thats bad inflamation). As time went on I noticed it was worse when food went down there and didnt get relief until i could move my bowels. I dont have diarreaha but constipation or it alwatys feels like constipation. I get rumbling noises, some squeezing , burning, tingling.. I had a colonoscopy 10 months prior and it was perfect. I had 3 CT scans and they were fine, sent me to a Urologist and that was fine.. I did have to go to a 2nd GI Dr who was more of a digestive Dr and he found my issues... Its 19 months now and this month started treatment. So this forum for me is good to compare symptoms. Lots of anxiety, panic attacks and feeling like I cant breath from the tightness in my stomach. I also have heart palpitations because of it..There has been NO quality of life for me and am not optomistic about anything making me pain free.. How this helped at least a little....
Posted 10/26/2018 9:43 PM (GMT 0)
Im same as your symptoms i had 2 colonscopy and 2 MRI and 3 blood test and 3 Fecal calprotectin. And constipation but still they didn't found anything. Some days normal some days pain next to navel left and right. I will do colonscopy after 6 month to see
Posted 10/26/2018 10:09 PM (GMT 0)
There is another test I had called a "push" endoscopy also called "push" Enteroscopy. This is almost like an endoscopy where they look into your stomach but only it goes further down where a colonoscopy really cant get to..(maybe in the area you describe) Also, I used this diagram to help show the dr's where my pain was which can possibly help
http://www.innerbody.com/image_dige08/dige41.html
Posted 10/26/2018 10:18 PM (GMT 0)
So you did enteroscopy or still waiting for it beacuse this test for small bowel beacuse normal endscopy and colonscopy can't go into small bowel. For me I go to bathroom everyday but pass like constipation. Waht blood test did you do ? Thanks for helping
Posted 10/26/2018 10:46 PM (GMT 0)
Yes, I did the enteroscopy because of where the pain was located. Everything was negative so they decided to do another colonoscopy at the same time and then spotted what looked like Crohns In the Ascending Colon, Rectum and many patchy ulcerations in other areas as well as Alot of inflamation. They wouldnt do another colonoscopy because it wasnt even a year. So within months I developed Crohns. There is also a small capsule that you can swallow and it takes pictures as it moves down your stomach. They wanted me to do that but I have a defribulator so decided not to. (you may have to see if your insurance covers it) As far as blood work goes, some of it I never heard of, alot of genetic testing is what I was told and it was really because they wanted more results because of what they thought may be crohns..Not sure if I helped but maybe you can try asking about these other 2 tests. Its very fustrating because for 2 years I ran around in circles with no answers.
Posted 10/26/2018 10:49 PM (GMT 0)
I told my Doctor if I was able to live with a feeding tube instead of eating, I would not be as bad.. I am still learning about what foods bother me..I actually am taking laxitives because once food gets into the small bowel I am in pain untill I can go to the bathroom
Posted 10/27/2018 2:21 AM (GMT 0)
Hi J, I saw your post & wanted to reply. I was on Remicade for 3 1/2 years. On my 3rd infusion I had a reaction within minutes of the infusion being started. I had a tight feeling in my chest, short of breath & my BP shot. The nurse stopped the infusion & paged my dr. He was in the hospital & came to the area the infusions were done. He had the nurse give me soluble Medrol & Benadryl in my IV. They also reduced the flow on the machine. After a few minutes they resumed the infusion & I did not have any problems. From that point on the nurses followed this protocol & I never had a problem again. He said usually if a patient has a reaction it happens on the 3rd infusion.

Since this was your first infusion it is too soon for you to know if it's going to work or not. It is not uncommon for it to take 3 infusions for a person to be able to tell if it's working or not. With the medications used to treat IBD's, none of them are fast acting. I have read too that someone felt relief immediately after their first infusion. Well, I have talked to too many people & they did not get relief after their first infusion either. So, do not get discouraged.

Remicade is one of those medications that should be tailored to the patients needs. I ended up having my dose doubled & my infusions were done every 4 weeks. This is what worked the best for me. My gi also put his Remicade patienst on Imuran. He said the Imuran enhances the effect of the Remicade & also helps prevent developing antibodies to it. Imuran takes a good 3 months to kick in fully.

Since you are new to this stuff, one of the best sites to read & learn from is CCFA.org. The information on this site is accurate. The internet is full of bad & incorrect information. Too much garbage & all it does is confuse people.

You mentioned having issues with constipation. You need to lay off of the laxatives. Get on a stool softner, Miralax or Colace to name a couple. A stool softner takes a few days to work, but they do not give you the runs either. Laxatives are too harsh on the insides. If you can handle prunes, eat a small hand full of them every day, or warm some prune juice & drink some of it every day.

Keep us posted on how you are doing.
Posted 10/27/2018 7:37 PM (GMT 0)
Coincidently I go for my 3rd infusion in another 3 weeks, Just had my 2nd one on Monday.. When you had your reaction on the 3rd, were you give Benadryl prior to the infusion? I get that and 2 Tylenols, wait about 20-30 mins then they start the Remicade. The way the nurse and the Dr’s keep asking how it went makes me wonder if they are expecting me to have a reaction. So far it’s like I never had the first 2 infusions. Is it possible to have Crohns and U.C. or its 1 or the other? I was told that most of the crohns is in my ascending colon and rectum but the pain is even worse in the middle pelvic area and to the left around the descending colon. I do know I have a lot of ulcers and patchy ulcers.. I know that Remicade is suppose to reduce inflammation but does it heal or stop ulcer pain? I can’t tell which is causing me more pain.

In your opinion, how long would the dr have me take remicade If I don’t improve? The 1st therapy was Pentasa and prednisone and I felt no different when I started it or when I stopped it..

I agree with your comments on laxatives, I do it to find the fastest relief. But even those take about 5 or 6 hrs to work for me. I tried Amitza but was getting nauseas. Before getting diagnosed I was actually drinking those over the counter bottles that you drink for a colonoscopy.. My Dr just shook his head and seemed to talk to himself when I told him. I agree that it is crazy but when you’re in pain you just do anything..

I do have heart disase and have a defribulator, about a week after my 1st infusion my chest would burn on and off and also would feel tight. Also a shortness of breath. My Cardio Dr said everything seemed ok. Maybe it’s not from the remicade and could be from anxiety.. I have this constant “tightness” around my waist where you wear a belt, I noticed the worse becomes, my body seems to really tense up and also get palpitations (my dr wants me in the hospital to get remicade because of my heart issue)

Thanks for your reply, If there was a Crohns support group located by me I would go….
Joe
Posted 10/27/2018 7:38 PM (GMT 0)
Also, I am on Coumadin, Plavix and ecotrin. I have only had bleeding twice.. But this is also a concern of mine
Posted 10/29/2018 4:19 PM (GMT 0)
Joejo, the reaction happened on my third infusion about 10 minutes after the infusion started. As I said above, the nurse immediately stopped the infusion. My dr came in & had the nurse give me the IV Benadryl & soluble Medrol in the IV. We waited a bit & then the infusion was resumed at a much slower rate. I was given the premeds prior to every infusion after that at a slow flow rate. My infusions started at 7:30 & I was finished at 2:30, along day. I didn't care it worked for me.

Also, you are probably getting 5kg of Remicade. That dose can be increased to 10kg. We had to double my dose & move my infusions to every 4 weeks. I had the best results on this schedule. I sense you are getting discouraged, but you need to give it time. None of these medications are fast acting on working. The Remicade needs to be tailored to your needs. By the way, Remicade is also used to treat UC, in case you didn't know that.

You need to see your biopy report, this will state what you have going on. You can obtain a copy from your drs office. All you have to do is tell them you want to come by & pick up a copy of the report for your own records.

Again, since you are new to this, please check out CCFA.org to learn about this disease & the medications used to treat it. Drs do not have time to really educate us patients, it's up to us to learn.

If your dr says your heart is fine, then you will know anxiety is working on you. Dealing with this disease is stresfull enough, don't let anxiety rob you too. I do not get into the diet thing either. I know what foods I can eat that do not give me any grief. I stay away from nuts, anything with seeds, no foods that contribute to inflammation as in spicy foods. I cook my veggies until they are really soft. I cannot eat lettuce, instant diarrhea. I also stay away from anything greasy & fried. I eat well, lol.

about the laxatives, you are aware those preps can cause inflammation in the gut. Laxatives draw liquid out of the colon, if you don't have liguid in there, constipation happens. Stool softners pull liguid in the gut, not take it out.

You should check with your local hospitals to see if they have any support groups or do a google search in your area. Take care & hang in there.
✚ New Topic ✚ Reply