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Crohn's Disease Forum » Treatment » Remicade/Infliximab » On Remicade for Crohn's since February, now I have a swollen lump under my jaw..


08-12-2013, 12:22 PM   #1
craiggles08
 
Join Date: Nov 2012
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On Remicade for Crohn's since February, now I have a swollen lump under my jaw..

...and I'm TERRIFIED. I spoke with my GI and he wants me to get it checked out by an ENT which I'm doing today at 3pm. He's concerned how hard and swollen it is. I know this can be a symptom of a dangerous side effect of remicade which we all know of and don't want to speak of..

I'm hoping its might be just a reaction to my psoriasis and other skin ailments I've developed probably also from Remicade. I'm also getting over a cold sore too so maybe that is where this swelling is coming from.

Has anyone else encountered this??? I'm so very very scared. I can't even concentrate at work. Anything to put my mind at ease...

Thank you all.

08-12-2013, 12:39 PM   #2
Clash
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My son did have a lymph node swell while on remicade(about 6 months after starting Remi) and right after starting MTX. We were really worried too! His turned out to possibly be related to his allergies and went down after a little bit of time.

I think there are a few other members who have had this issue as well, you could use the search bar on the forum as well as the key words swollen lymph node and see if you can pull up any of those threads.

I hope your appt. goes well and I will be sending good thoughts and prayers your way!
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C age 19
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Dx May 2014: JSpA
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PAST MEDS: remicade, oral mtx, humira
08-12-2013, 01:00 PM   #3
craiggles08
 
Join Date: Nov 2012
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Thanks, Clash. Hopefully mine will be the related to something similar. Making me feel a bit more at ease.
08-12-2013, 01:14 PM   #4
Tesscorm
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I can imagine how worried you are but there really are lots of references on the forum to swollen lymph nodes that are the result of something minor.

I know crohnsinct 's daughter also has remicade induced psoriasis and I'm fairly sure she also once mentioned a swollen lymph node that was related to the psoriasis. Hopefully, she'll see her tag and jump in with some info.

Good luck at your apptmt! Please let us know!
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Diagnosed May 2011

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May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
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08-12-2013, 01:23 PM   #5
crohnsinct
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Yep! DD has gotten them a few times under the jaw in the back under the ears. Ped was never concerned and the ped, derm and GI put it down to the psoriasis in her scalp, behind her ear and down her nexk draining through those nodes. She also had one under her arm and one in her groin. They didn't think psoriasis related but also docs said nothing to be concerned about.

Good Luck!
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
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Multi vitamin plus iron
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Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
08-12-2013, 01:27 PM   #6
craiggles08
 
Join Date: Nov 2012
Location: New York City, New York
Thanks everyone! Just curious... was a biopsy ever needed for her swollen lymph nodes?
08-13-2013, 10:00 PM   #7
Tesscorm
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How did your apptmt go? I hope all is okay???
08-13-2013, 10:12 PM   #8
KnightRobby
 
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Where is the swollen lymph node again? I have TMJ and have many swollen bumps near my jaw and neck region, but all the doctors say it is muscle scar tissue. Several other family members also experience swollen lymph nodes in the past.

It's good your getting it checked out, but I think with any autoimmune conditions expect this regularly. I would recommend tons of Vitamin C to boost the immune system...I imagine you are already trying everything though!
08-13-2013, 10:47 PM   #9
Tesscorm
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I think you've got to be careful about 'boosting' the immune system while on a biologic??? When my son started remicade, the specialty pharmacist called with lots of info... one thing she specifically mentioned is to not take supplements that boost the immune system (such as ginseng, echinecea (sp??)) as these would be working against the goal of the medication (remicade).

Re vitamins, she said to call if we had questions, however, as a general rule of thumb, she said anything you would find in 'typical' food was safe - so, for example, vitamin c would be 'safe' as would be omega-3/fish oil supplements.
08-14-2013, 09:12 AM   #10
craiggles08
 
Join Date: Nov 2012
Location: New York City, New York
Thanks all for your help and kind words.

Well, its serious enough that the ENT doctor I saw wanted to do an ultrasound and biopsy of the swollen lymph node.

He said that the ultrasound looked well other than the swelling. Its not a definite method for diagnosis but he seemed ok with what he saw. He checked my entire neck, was very thorough and he concluded that whatever is going in is localized to this one node. Which is good.

He then took some biopsies and he was really pleased with the samples he extracted which should make for good testing. I guess he was able to get a nodule or something-or-other and some other tissue. I have a follow up a week from today to go over the results.

If it comes back as normal and the swelling has gone done or gone, than thats best case and we just monitor it and that's that.

If it comes back as abnormal, I'll almost definitely need to have the node surgically removed.

If it comes back as normal or inconclusive but the swelling hasn't gone then the conversation has to be had if we want to remove it anyway.

He didn't seem to have any inclination yet of what it could be.. He said it could be just some weird infection that my body has localized to this one node and my body will take care of it soon. But it could also be more serious than that. So its a hurry up and wait game till next tuesday when I go back.

Wish me luck..
09-04-2013, 02:24 PM   #11
Tesscorm
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craiggles08 - how are you doing? I'm hoping all came out fine with the tests.
09-04-2013, 05:07 PM   #12
craiggles08
 
Join Date: Nov 2012
Location: New York City, New York
Biopsies came back as an abbess or a cyst, but its not a 100% diagnosis. So I had surgery last night to remove the node. Follow up next week for some final answers. Hopefully its just a cyst which I have a good feeling that's all it is. Wish me luck!
09-04-2013, 09:00 PM   #13
Tesscorm
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Lots of luck!!!
09-07-2013, 07:43 PM   #14
hetzbaby
 
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I have a swollen lymph node in my neck that the oncologist I've been following with may want to biopsy now. It's been there since February and they don't think a needle aspiration biopsy will provide enough answers. How was your surgery? I'm concerned about not being able to work right away after.
09-24-2013, 05:54 PM   #15
craiggles08
 
Join Date: Nov 2012
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Sorry to be late with my response. But all tests came back negative. NO CANCER! Thank god! So now I'm seeing a whole bunch of other various dr's to try and find out why my neck blew up. So far, no answers and no symptoms of anything. Crohn's or otherwise. I'm the pinnacle of good health. So weird and frustrating.

Hetzbaby - my surgery was super easy. I went to work in the morning. Left at 2pm. My sugery was at 4pm. I was home by 8pm and back to work the next day. Didn't even need to fill my pain med prescription. The only weird thing is part of my neck and ear lobe went numb. Its slowly coming back though. My surgeon said it would take a few months for it to fully come back.

Good luck. Hope it helps!
04-10-2014, 05:38 AM   #16
bdlsal
 
Join Date: Apr 2014
Curious have you had remicade since node removals? If so did you have any new side effects?
04-11-2014, 06:26 PM   #17
bdlsal
 
Join Date: Apr 2014
Craiggles08 have you had remicade since node removals? If so any new nodes surface?
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Crohn's Disease Forum » Treatment » Remicade/Infliximab » On Remicade for Crohn's since February, now I have a swollen lump under my jaw..
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