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HUMERA USERS PLEASE HELP ; NEED TO KNOW

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Crohn's Disease
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Posted 10/15/2011 11:57 AM (GMT -5)
I started Humera about 4 months ago ... I did not even think of the Humera as a possibility for my other serious symptoms

For a few months I have been experiencing breathlessness and a burning in my chest with no activity ; just walking from the car to the store would do it - finally began to have heart tests done - just last week had an EKG and then a nuclear stress test - I was told no news is good news. Called my doc and he said there was nothing wrong ...looked good.

Well that made me feel better - and I lived past the breathlessness knowing it was not my heart . It was easier now to "forget" about it and begin to do things again.

Today I was working in the yard - and the chest pain became so bad ...it was worse than ever ~ an extreme heaviness in the center of my chest and a very bad pain in the center of my shoulders/back . All the symptoms of heart ... I had to stop and come in the house to rest ... it has been about 30 minutes now and the pain in my back is finally gone as is the chest ....still feel it alittle with deep breaths.

So ... I got really scared ...but the tests said no heart problem !

Has anyone ever experienced anything like this with Humeria ? Is it possible that Humera could do this and if so what is your story ...how serious is it?


Anyone ?
Thank you!
Marie
Posted 10/15/2011 12:20 PM (GMT -5)
Have you talked to your GI or doctor who prescribed the Humira?
Did you first go to a GP who referred you to the heart specialist, or did you go straight to the heart specialist?

Did the docs only check your heart or did any of the tests/doctors look at the lungs? Humira can compromise the immune system, so you are at higher risk for various respiratory infections. It may be something like that. I am on Humira, and I have not experienced what you describe, but I am worried about respiratory infections and illnesses.
Posted 10/15/2011 1:29 PM (GMT -5)
A word of caution here, an EKG will only pick up damage that's already been done, or if you have an obvious
heart defect. I think if I were you I would first call the help line for Humira, and/or call your doctor. I would
rather you be safe than sorry, and no, you wouldn't be wasting their time. Most people would call 911 in the
situation you just went through... Please be careful, hugs!!
Posted 10/15/2011 2:17 PM (GMT -5)
Have you been tested for anemia recently?

I was having shortness of breath and a little dizziness with just walking from my car to a store. I wasn't having chest pain but I did have a very high heart rate and rapid heart beat, my resting heart rate was over 150 most days. Come to find out it was because my hemoglobin was so low and I was severely anemic. Once they got my hemo up my heart rate went back to normal and I am no longer short of breath.
Posted 10/15/2011 3:33 PM (GMT -5)
Thank you everyone ... I am on the weak side - but I rationalize that I did work I have not done in a long time too ...

had blood work done but don't know results yet ... wondering if I should call GI's office with a message or just wait till Monday ... What can he do ? He will tell me to go to the hospital ...

Think I can be okay if I don't do anything ...just lay here and rest ..I had a few times that I got up and could feel the blood rush from my head and feel like I would pass out.

Vicky I also had a nuclear stress test which they said showed nothing .... but I also know that they can not show anything even when something could be wrong ... it is so hard to decide

I appreciate all your input and advice everyone ... I am going to rest and watch Zoe ... : -)
Posted 10/17/2011 3:50 AM (GMT -5)
angina? might not show on the tests.
Posted 10/19/2011 2:42 PM (GMT -5)
Hi everyone ....wanted to give you an update - after being told it wasn't my heart from the nuclear stress and the EKG ... this past Saturday I decided to get past it ... and for the first time went outside to do some weeding ... Well, I got hit with the worst pain and if I had not been told it was not my heart I would have been in the ER ... I know that was probably stupid - I experienced severe breathlessness, chest heaviness and pain immediately between my shoulder blades ... I went in and sat for nearly 45 minutes until it all eased up ...

Then had bouts of dizziness and feeling like I would pass out .. . I waited till Monday and went to my GI and saw the PA ...she had me get a chest Xray ...just to be sure there was nothing showing up on my lungs or something the EKG could have missed ...
She told me to do nothing until I saw my PCP today ... with my blood test results .. Cupcake ...you nailed it .. my doc called it the smoking gun ... he said I have the worse case of anemia in a person that he has ever seen walking !

He said do I want to get a transfusion ? Well that kind of shocked me and he said okay we will try the iron ... if you get worse call me ... and you will get the transfusion ...otherwise I don't see him for 6 weeks (?)

Then my GI called and I told them about the anemia...she also said are you going for a transfusion ??? I explained the same story ...she said ... if you get any tingling or any other signs get to the ER ...
I just may go sooner than later ... as I am typing I am having tingling in my head ... I have sores on my tongue ...she said this is all from the anemia ! OY !!!

Needless to say ... I am so tired !
Just wanted to give you all an update and say thanks for all your input !
Posted 10/19/2011 3:35 PM (GMT -5)
Wow, so glad you have an answer! I personally get sick to my stomach on even low doses of iron. If I were having symptoms as bad as you describe, I would go with the infusion. Others here have had an infusion and could speak to it more than I could. Like you may still need to take pills in addition to the infusion?

In your follow-up with your GI, I would expect the conversation to include why your iron was so low (diet, current flare, malabsorbtion issues), and what steps you can take to keep it from dropping like that again (supplement, diet, crohn's medication to combat flare, etc.)

Good luck!
Posted 10/19/2011 6:44 PM (GMT -5)
I have had the infusions and they work really well.

Feel better soon.
Posted 10/19/2011 6:45 PM (GMT -5)
I lost 43% of my blood volume while in the recovery room after a surgery 10 months ago. I can tell you, even after being transfused with 2 units of blood, I was so weak. Any exertion left me winded, with chest pain, and so, so fatigued. It took me 9 weeks to get my strength back and my hematocrit and hemoglobin almost to the normal range. I wish they had given my another unit of blood because I would have regained my strength faster.

Also, as others have said, iron pills can be difficult for some to tolerate. They tore up my stomach and made me very constipated. The stomach issues were so bad, I never could tolerate my prenatal vitamins in either pregnancy. Hopefully, you won't have issues.
Posted 10/19/2011 8:53 PM (GMT -5)
Glad you got things figured out. What you described sounded very familiar to what I just went through so I had a good guess!

I ended up in the ER with mine, but the doctors there said pretty much the same to me they couldn't believe I was able to even walk into the ER with the levels I was at. I did transfusions and I felt almost an immediate benefit, within days. Since then I have been working on an iron heavy diet because I don't tolerate iron pills very well. When I got my levels up out of the danger zone but still anemic I couldn't believe how much better I already felt. Made me realize how exhausted I had been. Wonder what I will feel like when I am no longer anemic!

Hope you get things corrected and feeling better soon!
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