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Posted 10/19/2009 4:53 PM (GMT 0)

I have had uc for the past 15 years, and am on humira now,  after reacting to remicade.  For the past few months I have had some weird tongue issues.  The sides in the back feel like it is injured somehow.  I don't see any sores, but it feels like its been burned, or bitten, or has cracks or something.  I don't see much but maybe discoloration when I look.  Anyone ever had issues?  Could it be related to the colitis (maybe a vitamin deficiency?) or the meds (I just recently FINALLY weaned off of prednisone (again!!!).  Any ideas?

Posted 10/19/2009 6:15 PM (GMT 0)
Mama, burning tongue can be a symptom of a vitamin B deficiency. Are you severely limiting your carbs? Grains are one of the best sources of B-complex vitamins. You might try a B-complex supplement to see if it helps. It can't really hurt to try, because excess B vitamins are readily excreted in your urine and not stored in the body.

Hope this helps.
Posted 10/19/2009 8:26 PM (GMT 0)
i also have tongue issues whenever flaring. It feels like small points on tongue which pain a lot.....i even try to touch them with my finger and feel nothing. Once or twice i did feel one of those tiny buds on our tongue little swollen. I asked my GIs (ex-GI as well as new one) they both said it is all related. Now i have come to understand that whenever i get that pain on my tongue i can expect a flare up within a day or two. So as soon as i get it i try to clean my stomach with psyllium husk, eat lot of fiber & other good food :-) I have also changed my toothpaste & try to use a mild one. Presently i am using TOMS which works for me.
Posted 10/21/2009 9:40 PM (GMT 0)
Thank you so much!  I am nursing my 5 month old, but not limiting my carbs.  I don't always remember my vitamin, and my colitis has not been under control 100%, so I was thinking maybe vitamin deficiency.  I will look into all of the advice, thank you!

 

Posted 10/22/2009 1:43 AM (GMT 0)

mamaof5 said...

I have had uc for the past 15 years, and am on humira now,  after reacting to remicade.  For the past few months I have had some weird tongue issues.  The sides in the back feel like it is injured somehow.  I don't see any sores, but it feels like its been burned, or bitten, or has cracks or something.  I don't see much but maybe discoloration when I look.  Anyone ever had issues?  Could it be related to the colitis (maybe a vitamin deficiency?) or the meds (I just recently FINALLY weaned off of prednisone (again!!!).  Any ideas?

it's possible for mouth damage to occur with dietary changes (as often is possible during a prednisone cycle), but the prednisone itself may mask the mouth damage at higher dosages.  then when the prednisone is cycled down, the previously masked mouth damage may unveil itself.
Posted 10/24/2009 10:45 PM (GMT 0)
I see that you are on Humira.  I think I am getting ready to go on it and I am a little nervous.  How do you like it?  Is it easy to give yourself the shots?  Have you had any side effects?
Posted 10/26/2009 4:59 PM (GMT 0)

Humira has worked well for me.  I have been on it for over a year now off and on (I went off for a little while while pregnant, but had to go back on because I was so sick.  The Remicade first, and then Humira when I reacted to Remicade, have been a lifesaver.  Otherwise, it takes huge doses of prednisone to control, and I can never taper off.  I don't like the shots, but I find them fairly easy to do.  The pen is great because you don't see a needle or anything, and it is pretty fast.  I'm not sure about side effects.  I haven't had any obvious ones, but I wonder about the tongue stuff being related, and I also recently have had hives on my scalp that come and go that I think are caused by the Humira.  For me, it is still worth it.  Good Luck to you!

Posted 10/27/2009 12:08 AM (GMT 0)
Isn't Humira immunosuppresive? If so, it might be thrush. See a doc.
Posted 11/4/2009 10:47 PM (GMT 0)
I too get tongue pain during flairs.. hurts to eat pretty much anything.. it's weird... I think it was thrush this last time
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