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Ulcerative Colitis
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Posted 7/13/2010 2:10 PM (GMT 0)
I'm going through one of those severe frustration episodes over my health. As far as my UC, I think the Remicade may be failing unfortunately. I've got nothing but diarrhea/loose BM's, and some slight blood. The only positive thing is I'm only going to the bathroom 1-3 times/day with no urgency, no cramping and no mucous. I've got terrible shortness of breath which I believe is the Remicade as I've only had it since I started the treatment. I tried some light exercise for the first time this year and it felt like someone parked a truck on my chest...couldn't catch my breath. When I last saw my GI, my pulse was high...I just recently saw my primary doctor for a burning leg sensatoion and my pulse was 128 and I had low oxygen levels. I just saw a neurologist yesterday still trying to figure out this burning leg and my pulse was 100. I went through conductive nerve testing and EMG testing. I'm waiting on full blood test results to come back which includes a thyroid test to see if we can find what is causing the pulse/oxygen issue. I've had EKG's and a Heart Echo which showed everything was fine. I feel like I'm falling apart...if it's not one thing it's another. I'd give anything to get into remission for even a month. I'm still on prednisone (10mg) and I fear I have to increase it again to control my flare...it's the only thing that works! I also have to go for an MRI to figure out this burning leg...going to see if there are any back issues causing it. I'm due for my next infusion on Monday the 19th...just left all this info with the nurse to update my GI as he is out of the office. He won't raise my remicade dose above the 5g/kg because of the breathing reaction I'm having...maybe something will go my way health wise...soon...maybe...
Posted 7/13/2010 6:33 PM (GMT 0)
Wow, sounds scary, and I'd probably lose it emotionally.
I wonder if the back/leg issue is from the 6MP? I have a friend with CD and she can't take Imuran because she gets horrrrific back/leg pain from it.

Maybe considering surgery is an option you should be pondering?

q
Posted 7/13/2010 8:07 PM (GMT 0)
The neurologist said the leg burning may be a form of neuropathy. I've probably got some issue with a vertebrae or something. I've always gotten mild back pain which I contribute to my colitis flares but nothing ever debilitating. The burning leg sensation is what has been weird. It only started maybe 3 months ago or so and I always wondered if it had anything to do with the Remicade. It was always below my knee and only on my right leg. It's never painful but you can tell there is something there. What sucks about my colitis is right now the flare isn't that bad...even tho there is some bleeding, it's very light to the point I see a pink tint on the toilet paper. I know over time that's not good but I have no urgency, virtually no cramping, no mucous and only going to the bathroom usually 2 times a day. The shortness of breath is what has me concerned along with the high pulse. I checked mine this afternoon after sitting at my desk all day and it was 124 which is way too high. My GI will call me back tomorrow and let me know what he thinks and I'm also waiting on my blood results from my primary doc...I'm curious to see if I have a thyroid issue.
Posted 7/14/2010 1:34 AM (GMT 0)
Have you had an MRI of your head and lower back?

The other thing..have you had an x-ray or mri or cat scan of your lungs?

Have you had blood gasses checked?

q
Posted 7/14/2010 1:40 AM (GMT 0)
How long ago since you started the intestinew?
Maybe, just maybe...you're allergic to something in there?

q
Posted 7/14/2010 11:12 AM (GMT 0)
I've had an MRI of my head and upper neck when they were checking on headaches I was having...I have a very slight bulging disc in my top vertebrae that he said will not cause the sensation. I also have a polyp in my right cheek cavity which the neurologist said it's nothing to be concerned about. I've never had an xray or anything of my lungs. I don't believe I've had blood gasses either. I've actually not taken the intestinew for quite some time now...it's been sitting at my desk at work and haven't gotten around to taking it.
Posted 7/14/2010 3:01 PM (GMT 0)
Definitely push for the chest x-ray....at the very least.

I don't know all the things that could cause a high pulse, could definitely be thyroid.

Has the doc done liver enzyme tests to possibly lead to something?

q
Posted 7/14/2010 5:19 PM (GMT 0)
I was told by my GI's nurse that prednisone will give you an increase in pulse but not as high as I'm experiencing. I'm still waiting on my blood tests to come back to see what the thyroid results are. I see my GI tomorrow as he wants to discuss all these symptoms before he lets me have my next infusion on Monday. This shortness of breath only started after the Remicade and I'm wondering if it's contributing to the high pulse at all.
Posted 7/15/2010 8:34 AM (GMT 0)
Wow....if it is, then what? Hope the doc will give you some answers....and maybe more tests.

q
Posted 7/17/2010 1:04 AM (GMT 0)
well, all my blood and thyroid tests came back normal so back to scratching my head. My GI mentioned that remicade can cause the shortness of breath BUT it only normally happens during the actual infusion and doesn't "hang around" once finished. He has me getting my oxygen level checked on Monday before my infusion. I may need to look into asking for possible chest xrays as something has to be causing this. I also notice when the shortness happens that I yawn alot and if I remember right that is due to lack of oxygen to the brain.
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