Does Remicade cause shortness of breath?

I really shouldn't be complaining about breathlessness when I FINALLY have stopped seeing blood after months of bleeding but....I am a little discouraged by my lack of lung capacity. I get out of breath walking up the stairs now. I can't even kick a ball around with my kids.

I used to run about 20-25 miles a week, do ballet, pilates, salsa dancing, yoga, weight training. I can't do any of it now. Is this just more a symptom of having been in a long flare? Did anyone else get out of breath on remicade? I have noticed that it always hits about 5-7 days after a dose. I also just finished a 6 week course of pred but I never got out of breath from pred in the past.

Again, I realize I should not be complaining but I still would like to think that eventually I will return to my former self. Is that just an unrealistic goal?

Really? The shortness of breath is only when I am moving. I am so afraid to bring it up with my GI because he already wants to stop the Remicade and it is finally working. I can deal with a little breathlessness if it means not flaring. I was just hoping that this was one of those "body adjusting to it" sort of things.

Could this be a sign of an allergy? ugh. I hope not.

Ok I will give him a call tomorrow. I didn't know shortness of breath was a side effect. Thanks for the info. I really hope this is just a symptom of my low blood count/anemia. It's been wonderful not to see blood in the toilet for a change.

It could be so many things, UC or RX related or totally unrelated to UC. Not trying to be an alarmist but UC'ers are more prone to DVT, deep vein thrombosis and pulmonary thrombosis among other things.

I had shortness of breath way back when and it turned out to be severe anemia requiring 2 pints of blood in hospital. I'm guessing you aren't anemic if you're on Remicade because you'd have had blood tested, right?

Your GI should be able to answer whether Remicade could cause it. That's what you're paying him for, his knowledge and care about your health.

I agree that you should discuss with your GI to rule out something more sinister. I have felt the same way after flaring and I consider myself "deconditioned." I'm on remicade and soon after I started it, I noticed that I didn't have the reserve I previously had.

Also, I agree with the others who recommend that you bring the side effect to your doctors attention. Shortness of breath is a sign of an allergic reaction, which could become severe.

Thanks everyone. I really am going to call my doctor today but I do think it is anemia that is causing shortness of breath. It is not an "oh my god I can't breath" feeling. It just feels like my lungs act like walking up the stairs is equivalent to running 4 miles.

atwoodt - My GI wanted me to stop Remicade because it wasn't really working until I had my 4th infusion (the last one) so he wanted to stop it in order to start entyvio. I had a really positive reaction after my first dose but the next two doses could not keep me out of the hospital. I begged for one more dose and he agreed. The last two have been double doses so maybe that is why I have been knocked on my butt?

platinumpixie - when you say you didn't have the same "reserve," did that come back over time?

kiptyn - I do have a second opinion in two weeks with a new GI. I am guessing my GI has been so focused on stopping the bleeding that he has not really paid attention to the anemia. I feel bad looking for a new GI because he really is a nice guy but there are a lot of areas where I feel he failed me. Example - he never had me start rectal meds until I was too far gone in this disease. I didn't even know such a thing existed because this was before I joined this forum. (If any newbie is reading this....rectal meds are key!) I have found tremendous success with controlling lower bleeding with them.

Finding a good GI can be very tricky. Just because a GI is affiliated with a topnotch hospital does not mean you will receive the best care.

Without reading all the replies here -- I would just say that once I started Remicade it seemed that my pulse went up to around 80-90 from 65-70 (resting) -- and I did occasionally experience more shortness of breath than before (do not know if it was related for sure).

I was on Remicade for almost three years.

Unfortunately, my reserve has not returned but I've had a lot of set backs with UC over the last 18 months. Just when I would feel well enough to start working out again, something else would derail my plan.

Glad to hear you're getting another opinion.

Don't feel bad about leaving your current GI. Your number one priority is to yourself, not to the the ego/hurt feelings of a doctor.

When I was anemic, my then-GI ignored it but my internist sent me to a hematologist who did an iron infusion. I only needed one and was back to normal (had also recovered from the flare so I was able to retain the iron).

No matter what the new GI says, you may want to see a hematologist. The good thing about them is they focus on fixing the anemia. Sometimes it's good to have a specialist that has one goal as long as the treatment won't affect your UC. I don't see how iron infusions or blood transfusions would do that. However, taking iron supplements might, so double-check that.

Symptoms common to many types of anemia include the following:

Easy fatigue and loss of energy
Unusually rapid heart beat, particularly with exercise
Shortness of breath and headache, particularly with exercise
Difficulty concentrating
Dizziness
Pale skin
Leg cramps
Insomnia

http://www.webmd.com/a-to-z-guides/understanding-anemia-symptoms

Once you get your anemia treated your symptoms should go away

I had the same problem. I couldn't seem to get a good breath 7-10 days after an infusion. No wheezing or anything like that. It was odd, I just couldn't seem to fill my lungs. This of course caused weakness and a complete inability to do strenuous exercise. The feelings would generally clear up after a week or so and not re-appear again until 7-10 days after my next infusion.

I had chest X-rays done and some sort of test for drug induced lupus which both came back with no issues. The verdict was "serum sickness" - basically a delayed reaction to the Remicade so I had to stop it. Sadly, it was the only drug that really worked for me. I next tried Humira which gave me no further problems. Perhaps it will work for you if you have to come off of the Remicade. I know one thing, the shortness of breath stuff is kind of scary!

Glad you got an answer and got blood. I felt a million times better after getting blood.
But…your medical professionals dropped the ball by not doing a simple blood test to catch this earlier.

My anemia was also caught by my primary (not my GI) who called me very upset, telling me to rush to the hospital asap. I had been to 2 other doctors trying to get an answer to my breathing problem. It's ridiculous that it wasn't diagnosed earlier.

You need a better GI and should be having blood tests more often than once a year at your physical.