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Chest pain

Hi everyone just wondering if there is any collective wisdom out there about chest pain and crohns/ biologics. This started earlier this year when I was on remicade and got so bad along with a high resting pulse, vision a bit blurry sometimes, pressure in my head and feeling like I was going to collapse that the consultant agreed to switch me to entyvio and I've had three loading doses. Since then it is less severe but there is still occasional chest pain, weird arm pain like I've jarred it, breathlessness and I struggle when it is hot and airless but today it's cooler with a breeze and I noticed I was still struggling just walking round town. Also the resting pulse rate has started creeping up again to about 120 (it's been around 90 since I came off remicade).

WTF?! I hate this disease.
 
Are you taking anything else? How are your iron levels? Have you been bleeding? Increased heart rate and breathlessness can be a result of low blood volume/low iron. Sorry you are going through this.
 
Are you taking anything else? How are your iron levels? Have you been bleeding? Increased heart rate and breathlessness can be a result of low blood volume/low iron. Sorry you are going through this.
Thanks for the reply I do have low iron but when I went for iron infusion just before Christmas I passed out within a minute or so of it starting so they stopped it. My b12 is also low (I’ve had a resection) but apparently not low enough that I’m eligible for injections. I could ask doc to run tests again. Thanks for the idea.
 
Hi, I know your post is old but wondering if you ever got to the bottom of your chest pain and related symptoms? I've had a very similar experience. My chest pain, lightheadedness and racing heart began about 7 months after I started remicade. They had doubled my dose and added methotrexate at the time. Finally I stopped both drugs this spring because I was very concerned. Since then it still continues, had a 30 day heart monitor and echocardiogram but nothing cardiac found. I'm stumped. Have u had any other testing?
 
Hello
Still no answers I’m afraid but the doctors are now concerned enough to start running tests so I have got an MRI, endoscopy and chest x ray coming up. My chest pain has not been as bad since stopping remicade (switched to entyvio) but it is still present at a low level every day and occasional sharp twinge.
The doctor said not sure if related to Crohn’s or biologics. Their theories included 1. Thrush in the oesophagus due to so many immunosuppressants over the last year (had 5 day course of anti fungal but no improvement) 2. Crohn’s has spread to the oesophagus (hence planned endoscopy) 3. Have randomly developed asthma at age 40 4. Have developed some heart problem. 5. Have developed GERD/ heartburn
It’s a tricky one because obviously chest pain is a bit worrying. I don’t know if it is minor and not an issue or warning of impending doom. This is something I struggle with as my early warning signs of Crohn’s were dismissed as me being postnatal and the next thing I knew I was in acute care with sepsis having an emergency resection.
Anyway. I don’t have dates yet for all the tests but hopefully will get either answers or improvements.
It also looks like I may have to switch drugs again (from entyvio to Stelara) as the entyvio has kept my CRP low but not managed to control faecal calproctin which dropped briefly to 367 but now back up to 600+ (they stop counting at 600 in UK health system). Whether Stelara will make chest pain better or worse who knows.

I will update if I get any answers. Good luck with your progress.
 
Hi all. I have had a similar issue after 6yrs on infliximab/remicade. Had pre-syncope episodes (probably 10 over a month) with heart rate dropping in 20s. Dizziness, brain fog, chest pain and other related issues since - been 6 months now and probably 50% better. Had MRI, cardiac monitoring, stress echo and numerous other tests (2weeks in hospital)- all normal. Neurologist indicated vasomotor pump issues which will pass in time. Specialists didn’t all think it was related to remicade however I have spoken now with a number of people and other specialists - mabs are still fairly new and side effects are still being researched. 6 years of brilliant cover with infliximab and was reluctant to change when I started having a few tell tail signs after infusions. Pushed it one too many and ended up here. Definitely related to the mab in my opinion, however hard to convince people when tests show normal.
 

Kyle.h

Kyle
Location
Vancouver
Hello
Still no answers I’m afraid but the doctors are now concerned enough to start running tests so I have got an MRI, endoscopy and chest x ray coming up. My chest pain has not been as bad since stopping remicade (switched to entyvio) but it is still present at a low level every day and occasional sharp twinge.
The doctor said not sure if related to Crohn’s or biologics. Their theories included 1. Thrush in the oesophagus due to so many immunosuppressants over the last year (had 5 day course of anti fungal but no improvement) 2. Crohn’s has spread to the oesophagus (hence planned endoscopy) 3. Have randomly developed asthma at age 40 4. Have developed some heart problem. 5. Have developed GERD/ heartburn
It’s a tricky one because obviously chest pain is a bit worrying. I don’t know if it is minor and not an issue or warning of impending doom. This is something I struggle with as my early warning signs of Crohn’s were dismissed as me being postnatal and the next thing I knew I was in acute care with sepsis having an emergency resection.
Anyway. I don’t have dates yet for all the tests but hopefully will get either answers or improvements.
It also looks like I may have to switch drugs again (from entyvio to Stelara) as the entyvio has kept my CRP low but not managed to control faecal calproctin which dropped briefly to 367 but now back up to 600+ (they stop counting at 600 in UK health system). Whether Stelara will make chest pain better or worse who knows.

I will update if I get any answers. Good luck with your progress.
Hello :) did you make any progress with getting to the bottom of the chest pain? Hope your feeling better and you got some relief!
 
Hello and hope you are all well in these strange times. Never got to the bottom of the chest pain, endoscope ruled out oesophagus problems but did find mild inflammation in stomach so whether the Crohn’s has crept up there I don’t know. Biopsies said gastritis, no infection. Only advice was don’t drink alcohol or take ibuprofen which I haven’t done in years anyway - glass of red about once a month. Bit like when they diagnosed Crohn’s and said only official advice was don’t smoke or be obese, at a time when I was seriously underweight and haven’t smoked since school.
Anyway.
So still on entyvio but higher dose to try and get inflammation under control. Still struggle with tight chest, a bit breathless, can’t stand up for long in warm airless places without feeling like I’m going to pass out. It hasn’t got any worse on the higher entyvio dose. Hair is thinner and get weird tingling/ lack of colour at the end of my fingers when cold.
In good news, got a b12 spray on amazon, think it’s called my organics, and it has put my b12 right back up 😀😀 (can’t absorb normally due to resection).
So the chest and breathing issues are unsolved, not ideal with the old Coronavirus, I’m as socially isolated as possible, taking vitamin d, drinking green tea and taking olive leaf extract (both allegedly antiviral, who knows) and just hoping to get through like everyone else. Feels rubbish not being able to do much to help.
 
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