Anyone have heart problems on remicade?

[25times]

I've been on remicade for a while now.. Since like, August. Never had a reaction or anything wierd. But now I've been having some weird symptoms, and no one seems to know whether or not it's from remicade or something else. For the past couple months I've had some neurological problems such as shaking and tremors, numbness in arms and legs, and I frequently go blind (completey black) in my right eye. I often sweat like crazy. I mean, dripping, puddles, soak the blankets sweating. My dr thinks I may have ms, and I'm just waiting to see a neurologist.
For the last 5 days or so, I've having some scarier symptoms. Pretty bad chest pains, and pain in my left arm like someone is squeezing the crap out of it. Also, nausea (but I'm always nauseous,) sweating, difficulty breathing like my lungs aren't filling up all the way. I went to the ER last night and all I heard from everyone was "well, you're only 21, I mean, seriously." It made me feel like a hypochondriac, but this has never happened before. I left the er before being seen. They didn't even think it was important enough to take blood and the nurse I had was the biggest bitch to me.
Has anyone else had symptoms like this from remicade? I'm just trying to rule out causes of this. I know this is actually happening, it's not just in my head. You can't fake the stuff that's happening to me. The shaking is really noticeable, and it happens in areas that I could not fake. And you can't make yourself go blind. I need to figure this out, cuz it's really bothering me and it's embarrassing. I don't even wanna go out anywhere.

 

[steelek5]

I am starting remicade in the next few weeks. It scares the crap out of me and SO nervous for it! Please keep us updated on when comes back from this. Sorry i can't help with your problems. Good luck

 

[Jessi]

I don't think Remicade is to blame for the stuff you're experiencing. It sounds to me like a vitamin deficiency. You really need to read a thread that I had started a while back. It's very very similar. My GI wanted me to be tested for MS, too. It's an important test, because Remicade will exacerbate MS symptoms. So it's good to rule it out. Please read through this. I think it could give you a lot of insight. :hug:

http://www.crohnsforum.com/showthread.php?t=21079

Also, the chest pain and left arm problem sounds like a near anxiety attack. I was put on Sertraline HCL 25mg tabs for my anxiety, and I've been much better.

 

[25times]

Thanks Jessi. I have to get blood tests every week, and I get tested for vitamin and mineral defiencies. I'm all good apparently, I take multi vitamins, and also extra vitamin D and calcium. That's the first thing I wanted checked out, because I did actually read your thread. I wanted to make sure I wasn't going through all these tests for nothing. But thanks for letting me know, if I hadn't already been tested I would definitely get on it. Is that what your symptoms were from?

Also, I used to have really bad panic attacks and anxiety, so I know exactly how that feels. I haven't had one in a long time, and this was definitely not that. I was surprisingly calm through out everything last night, and didn't feel anxious at all. Plus, when I have anxiety attacks, I cry SO much. There was no crying last night, except when my boyfriend called me lazy :voodoo:

 

[Jessi]

Oh, I'm so sorry that it couldn't be a simple solution. I had hoped... Bummer!

My doc still wants me tested, but I don't know if I'll ever have the money to do it. Although, my hubby's insurance should kick in any time soon.

You're in my thoughts and prayers. Hang in there, hun. :hug:

 

[SarahAnne]

Samantha, do you have problems with your blood pressure? I have low to low/normal blood pressure most of the time. When I was pregnant with my son I got pre-eclampsia (pregnancy related high blood pressure) and I didn't know it. I felt like I was having a heart attack, my chest felt like it was being squeezed and I had a horrible headache that made me cry. You've probably already had your BP checked, but I would watch it because those symptoms are very similar.

Hope you feel better!

 

[Lisa]

I haven't had any history of problems - BUT in the lasat couple weeks now my BP has been up....it spiked during my Remicade treatment last week (178/100 or so) - BUT that was right after IV steroids...

On the 9th it was 156/90 and this morning I had it taken again (different person) and it was 154/98.....now I think I know why I have been feeling a bit 'weird'...

With the chest pains you experienced, I WOULD get that checked...YES - young people can have heart attacks and cardiac problems!!!!!.....

I tip/trick - especially if you hav the coverage, if you experience the pains again - GO BY AMBULANCE - you should be triaged and seen a lot quicker - PLUS there will be vitals etc taken even before you get to the ER. A couple years ago now, my Mom called me to say she was having some chest pain going into her left arm - I took her to the ER ( no shortness of breath or other urgent symptoms) - and she was seen right away - as son as I said she was having chest pains...

That should NEVER be taken lightly, no matter WHAT AGE!

 

[muppet]

I wouldn't put much past Remicade. I know it's something you don't want to stop taking if you don't have to, but don't rule it out. My daughter had very severe chest pains on Remicade before she had to discontinue it, but none of the neurological symptoms you're describing.

Remicade is a serious drug with serious side effects and just because something hasn't yet been documented doesn't mean there's necessarily no causal link. Tread carefully, and if you feel that pain again call 911. Don't be dissuaded by jaded and apathetic ER staff.

 

[chadmock]

Just wanted to share with you that after my 4th treatment on Thursday, my blood pressure shot through the roof and my pulse went up to 131(normal high 60's). Felt like my chest was going to explode. I have had problems since i started Remicade, mainly extreme back and leg pains. My GI cannot figure out a cause as of yet.

 

[pcobb]

perocarditis

after a year on Remicade i wound up in ER with perocarditis which is inflammation of the heart lining..the pain can be confused with a heart attack..but a major difference is that u will try to hunch forward in an automatic attempt to relieve the pain..u will gasp and try to breathe but it will be extremely painful..in fact you will feel like your entire chest and upper back are in a ever tightening vise..previous to actually getting the pain I experienced night sweats, extreme fatigue, and back pain ..oh..the pain is much worse if you try to lay down..good news is that NSAIDS will reduce inflammation..bad news for me was that I'm allergic to them..lol

 

[Jessi]

NSAIDS are never good news for IBD patients!!

 

[Johnnysmom]

My son has been having some heart issues since starting 6mp and pred so I have been looking into this issue. I read that you can have a magnesium deficiency and it won't show up in a blood test. It can cause all of the symptoms you have written about. Only 1% of the magnesium in your body is stored in your blood, most of it is in your bones and tissue and your body will take it from these areas to keep it regulated in your blood. A tissue biopsy is the only way to tell if you are truly deficient. We are seeing my son's G.I. tomorrow to discuss supplements and have to see a pediatric cardiologist to rule out any heart issues but with crohn's the most likely scenario is vitamin deficiency. I hope this helps, and I hope you find out what is causing this so you can start feeling better.

 

[bigtruck]

After being treated with infliximab on and off from 2002 I was taken to hospital in 2008 with fluid on the lungs, the resulting tests showed a blood clot in the left ventricle and enlarged heart muscle(dilated cardiomyopathy) to cut a long story short infliximab was to blame! Be careful folks.

 

[kromom1]

I never had any neurological problems, but a couple of weeks after my third infusion I started having bad chest pain and pain in my left arm (elbow area). The pain hurt really bad with laying down and I start having trouble breathing. It turned out I had fluid in my heart and lungs and ended up having pericardial window surgery to drain it. I spent almost 2 weeks in the ICU on a ventilator. This was called a lupus-like reaction to Remicade.

 

[25times]

Oh my god, everyone has experienced some of the stuff I'm having. I've attributed the chest pains to costochondritis, and they have since gone away. It doesn't QUITE fit with costo symptoms, so I'm still a little worried, but no one seems to want to do anything. It's almost like there's too much going on with my body to bother with other things. The ms symptoms have gotten worse since my last remicade infusion. My right leg has been going "dead" as I call it. It just won't work sometimes. I can't move it or put weight on it.. It's really weird and my dr suggested that I get a cane. I politely declined for now. My dr keeps telling me to go to the hospital if I go blind again or my leg stops working, but it comes and goes within an hour so by the time I get there it's gone. I'm trying to get into the urgent neuro clinic, but it's pretty difficult.
By the way, I usually have normal BP and heart rate, but if I'm in pain or sick at all, I have a very low BP and very high heart rate. I don't think I've ever had high blood pressure, but I will keep checking.