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Wannabe
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Date Joined Jun 2013
Total Posts : 4
   Posted 7/12/2013 7:20 PM (GMT -6)   
Has anyone ever had any issues with blood clots while in a flare?
 
I have been diagnosed with blood clots that started in the leg but now I have them in the lungs.  I was hospitalized for a few days while I was on Heprin and a high dose steriod to try to get the flare under control because they were afraid of the active bleeding and being on a blood thinner.  I guess I am just trying to figure out if the UC helped contribute to this or if maybe something else is going on.
 
And it really sucks being back on this stupid prednisone!

notsosicklygirl
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Date Joined Dec 2008
Total Posts : 9603
   Posted 7/12/2013 7:51 PM (GMT -6)   
I think people with UC are at an increased risk for clots and DVT. I am sorry you're going through this. I hope things are better soon.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
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PathogenKiller
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Date Joined Jan 2013
Total Posts : 2414
   Posted 7/12/2013 10:04 PM (GMT -6)   
You should get tested for Mthfr genes. Also, Antiphospholipid antibodies.. They should already be testing you for factor v Leiden etc.

UC can contribute, but you need to get to the root and UC is unlikely the root.

shadowace98
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Date Joined Sep 2008
Total Posts : 14
   Posted 8/9/2013 2:11 AM (GMT -6)   
I have been going through a difficult time this year with my colitis.. After a few months of getting my UC under control with Remicade. ( 4 infusions so far) My leg swelled up and they found a blood clot in it.. The next day I had a CT scan done , and they found them in my lungs also. Was told due to UC and being anemic was a big part of it. I also had 2 blood tranfusions during that time. I am feeling good at this point , except for swollen feet and ankles and pain that goes with it.

aguywithuc
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Date Joined Jun 2010
Total Posts : 2339
   Posted 8/9/2013 8:12 AM (GMT -6)   
PathogenKiller said...
You should get tested for Mthfr genes. Also, Antiphospholipid antibodies.. They should already be testing you for factor v Leiden etc.

UC can contribute, but you need to get to the root and UC is unlikely the root.


I had all the bloodwork sent to Mayo and it all came back negative for any underlying genetic clotting factor and yet, I had a Sagitall Sinus Thrombosis ( venus ) at the outflow of the brain in 2010 while on high dose prednisone and dehydrated. Once off the prednisone I was able to cut the coumadin in half - only 3 months and MRI/MRV showed it completely resolved.

I also lost my ulner artery ( arterial ) in a car crash Feb 2013 while high does prednisone and when I went back for the angiogram from femoral artery in leg to hand they created another venus clot from wrist to elbow on the good arm with the IV. Again I was on high dose prednisone.

2 veins
1 artery

On prednisone all 3 times.

When I got off prednisone the one on my right arm from the IV vanished. Unfortunately the ulnar is still lost on the left arm.

PathogenKiller
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Date Joined Jan 2013
Total Posts : 2414
   Posted 8/9/2013 4:03 PM (GMT -6)   
Those aren't all genetic clotting factors. Hughes syndrome/Antiphospholipid antibody syndrome is not genetic. Plus Mthfr is not on the typical genetic clotting panels so it doesn't get picked up on.

aguywithuc
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Date Joined Jun 2010
Total Posts : 2339
   Posted 8/9/2013 5:21 PM (GMT -6)   
PathogenKiller said...
Those aren't all genetic clotting factors. Hughes syndrome/Antiphospholipid antibody syndrome is not genetic. Plus Mthfr is not on the typical genetic clotting panels so it doesn't get picked up on.


You mentioned this in February, how expensive is it to test for these ?

Mthfr does not seem related to clotting :

ghr.nlm.nih.gov/gene/MTHFR

This one definatlely seems worth looking into..

Hughes syndrome, is an autoimmune, hypercoagulable state caused by antiphospholipid antibodies. APS provokes blood clots (thrombosis) in both arteries and veins as well as pregnancy-related complications such as miscarriage, stillbirth, preterm delivery, or severe preeclampsia.

PathogenKiller
Veteran Member


Date Joined Jan 2013
Total Posts : 2414
   Posted 8/10/2013 1:13 PM (GMT -6)   
Mthfr is most certainly related to clots. Many people are dxed with polymorphisms because they threw a clot and it's the ONLY mutation.
www.med.illinois.edu/hematology/pthomocysteinemia.htm

Any homocysteine level over 9 is a risk. 6-8 is ideal.

PathogenKiller
Veteran Member


Date Joined Jan 2013
Total Posts : 2414
   Posted 8/10/2013 1:15 PM (GMT -6)   
With your history you should easily be able to get your doc to run tests for homocysteine, Antiphospholipid antibodies and Mthfr 1298 and Mthfr 677 and have it covered. Labcorp runs Mthfr and homocysteine.. I think they run Antiphospholipid panels too.

aguywithuc
Veteran Member


Date Joined Jun 2010
Total Posts : 2339
   Posted 8/10/2013 5:13 PM (GMT -6)   
PathogenKiller said...
With your history you should easily be able to get your doc to run tests for homocysteine, Antiphospholipid antibodies and Mthfr 1298 and Mthfr 677 and have it covered. Labcorp runs Mthfr and homocysteine.. I think they run Antiphospholipid panels too.


I think I was tested for anitobies. Says IF clinical correlation indicated then repeat assay of Protein S and Antigen in the absence of anti-coagulation therapy.

Well I did the first part, I fired my GI and got a new one who seems reasonable, this time it is a woman. She was ok with Uceris ( when needed ) and any scripts I asked for. She ordered elaborate bloodwork, I will bring it up when I see her again.

Thanks
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