Lip sores with Remicade and Humira, anyone?

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Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 5/4/2009 9:02 AM (GMT -6)   
I got this at the tips of my lips both on Remicade, which my body rejected and apparently kicked out of the system, and a little bit now with Humira.  It seems to come on during the initial time when the drug is effective and then abate when the drug wears off in terms of effect vs my UC.  Humira may unfortunately be failing on me just as Remi did, but I'm curious to see if anyone else got this and if perhaps it is a side effect that will go away over time.  I am sure it is not any form of latent Herpes as I was never even exposed much less symptomatic with any STD, but I am getting the impression this was no coincidence and that this lip sore thing is a side effect (in my case) from these drugs in its own right. 
Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering pred again, maybe surgery this year
 
 


christianbcmom
Regular Member


Date Joined Apr 2009
Total Posts : 69
   Posted 5/4/2009 10:51 AM (GMT -6)   
Funny you should post this, I don't know if you had a chance to read my other post, but I am a spouse of someone who is on Humira and I'm allergic to it! Funny thing is, I woke up this morning with a sore on my bottom lip. I too have never been exposed to any std's or any form of herpes. I was wondering the exact same thing, is this from the Humira too??? Also, my husband was on Remicade as well and it worked for a little while, but then it stopped working. That's when the GI switched him to Humira, but it doesn't seem to be helping him either. After the injection he gets really bad cramps, and it almost seems to make it worse for him. Does this happen to you too?? Just curious. Thank you for posting this. I've never gotten any kind of sores on my lips ever, and now I woke up this morning with this thing on my lip and I was just exposed to the Humira again this weekend. So I wonder if there is any correlation? Thank you.
Alaina - age 26
Vitiligo
Hyperthyroidism
Ulcerative Colitis-- Diagnosed when I was 16. (It has it's ups and downs)
Urticarial Vasculitis (my newest endeavor)
 
 
Current Meds:
Xyzal (5 mg every 12 hours), Atarax (every 6 hours), Pepcid (every 12 hours), Doxepin (50mg at bed time), Levothyroxine (.50 mg), and Ativan if needed, but I haven't really used it. I also have been loving Aveeno Oatmeal bath, and their calimine lotion when all else fails!
 
 
 
 


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 5/4/2009 2:27 PM (GMT -6)   
Do you mean cold sores? There are two types of Herpes viruses--cold sores and STDs. I've definitely never been exposed to STDs and I don't ever share food etc. with other people, but I've been getting tons of cold sores since September. My PCP says that I might have gotten it as a kid, but it just stayed dormant until now and b/c of the Remicade, my body can't fight it. I have to take oral and topical anti-virals for this.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (7 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 5/4/2009 3:13 PM (GMT -6)   
Absolutely it's possibly herpes....you should, however, get them swabbed to make sure it's that and not just benign apthous ulcers caused by a virus.

If it is herpes, you should be on a medication that can help.

Please be careful not to do anything to cause them to spread....very, very careful! Treat them as herpes until notified differently.
 
We give our cat L-Lysine....it's great for helping suppress the herpes virus.  I take it as well on occasion when I feel a cold coming on, and my husband takes it to help with coldsores.  Do the research on that and maybe that could help suppress it enough to help lessen the severity of your outbreaks.

Keep us posted....
quincy


*Heather* Status: mild flare enemas tapered to every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 5/4/2009 4:27 PM (GMT -6)   
There is just no way I can imagine it would be herpes in my case- moreover it doesn't resemble the images of Herpes I looked at. I suppose ti might be a conventional cold sore but I have never, ever had those in my life either. I am inclined to think it is some sort of mild allergic reaction when the bbody rejects the biologics. I am not giving up just yet on Humira, but I am monitoring things closely. Christianbcmom- I have not got any cramps on Remicade or Humira. With Remicade I had some sore joints, which stopped when I came off Remicade- actually it stopped when Remicade's benefits wore off. If Humira either stops working, even at a higher dose, or causes wierd side effects, I will stop, but for now I am keeping it up to try and get off prednisone. If all else fails I am very comfy with j-pouch surgery now but want to check off every box before I throw in the towel.
Pancolitis >20 years, allergic to all 5ASAs
Tried everything under the sun (natural and alternative)
Some partial success with TSO but was too expensive to keep up 
Remicade Humira, lots of probiotics, entocort, tapering pred again, maybe surgery this year
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 5/4/2009 6:48 PM (GMT -6)   
Well..do get it checked out....for it doesn't matter if you've ever had a cold sore (which is herpes simplex)...the fact that you might have the virus and not be symptomatic until your immune system has been suppressed is plausible.

quincy
*Heather* Status: mild flare enemas tapered to every 2nd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate). @ bedtime
~various digestive enzymes as needed; started Omega 3 
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


christianbcmom
Regular Member


Date Joined Apr 2009
Total Posts : 69
   Posted 5/4/2009 7:43 PM (GMT -6)   
I don't know, I feel as though I'm in the same boat as probiotic. I've only ever slept with just one man, my husband, and I don't exactly kiss everyone either, and I'm the only girl he's ever slept with too. I really don't think this is herpes, because it definitely doesn't look like all the pictures of what's on the internet. It kind of looks like, well mine anyway, you know if you drink a lot of orange juice and you get one of those little white bumps on your tongue? Bear with me please :) That's what it looks like on my lip. Is that what yours looks like to PROBIOTIC? Please don't take me the wrong way and I don't want to be rude if I'm sounding that way, but I really don't think there is any way this could be herpes. Thank you though for the response.
Alaina - age 26
Vitiligo
Hyperthyroidism
Ulcerative Colitis-- Diagnosed when I was 16. (It has it's ups and downs)
Urticarial Vasculitis (my newest endeavor)
 
 
Current Meds:
Xyzal (5 mg every 12 hours), Atarax (every 6 hours), Pepcid (every 12 hours), Doxepin (50mg at bed time), Levothyroxine (.50 mg), and Ativan if needed, but I haven't really used it. I also have been loving Aveeno Oatmeal bath, and their calimine lotion when all else fails!
 
 
 
 


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/4/2009 8:03 PM (GMT -6)   
I get cold sores after almost every Humira injection. I find that it helps to take a zinc tablet for a few days on either side of the injection. With zinc, I just get tingling and maybe a small eruption; without zinc I get a full blown ugly sore and scab.
Co-Moderator Crohn's Forum.

New meds thread


quincy
Elite Member


Date Joined May 2003
Total Posts : 30984
   Posted 5/5/2009 1:36 AM (GMT -6)   
Absolutely one can have canker sores....not herpes.....but my point is to make sure what it is.

Canker sores can be caused by lowered imune system, stress, certain foods, autoimmune disease...etc....

At least the doctor would be able to treat them and relieve one of suffering.

One thing that works well for regular canker sores (the white thingies on one's tongue from maybe high acid, spicey foods, stress) is orajel for mouth sores. It contains zinc...and heals them up quickly.

I had one coldsore in 1976 and the next one I ever got was in 1999 when I had the flu. threw me for a total loop. My husband gets them...and in 1999 we would have been married 20 years.

Probiotic...did you do a check on the internet for pics of apthous ulcers in the mouth or canker sores? Do you match them?

quincy
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


christianbcmom
Regular Member


Date Joined Apr 2009
Total Posts : 69
   Posted 5/5/2009 4:48 PM (GMT -6)   
Canker sores...thank you!!! I could not for the life of me remember what they were called. Thank you!!! :)
Alaina - age 26
Vitiligo
Hyperthyroidism
Ulcerative Colitis-- Diagnosed when I was 16. (It has it's ups and downs)
Urticarial Vasculitis (my newest endeavor)
 
 
Current Meds:
Xyzal (5 mg every 12 hours), Atarax (every 6 hours), Pepcid (every 12 hours), Doxepin (50mg at bed time), Levothyroxine (.50 mg), and Ativan if needed, but I haven't really used it. I also have been loving Aveeno Oatmeal bath, and their calimine lotion when all else fails!
 
 
 
 

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