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Long Remicade use...high white count

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Posted 6/5/2019 7:15 PM (GMT 0)
It's been a long while since I've written,,my son has been on Remicade..full dose,,once a month for about 8 years.
He was doing just fine..no other meds.. just a normal life.
He had a colonoscopy about 4 months ago after 4 years,,,and the doctor said it looked perfect,,he saw no colitis.
He had to have a blood test before and the dr. said his white count was up some and t check it again in about 4 months so he just had it done, and it was still up. His regular doctor wants him to see a hematologist...and now my son is scared to death he may have lymphoma. Did anyone on here who takes Remicade get it, and is it curable.
Could the high white count just be an infection somewhere...he had a cold recently and sore throat but didn't bother going to the doctors and it went away with over the counter meds. He has no other symptons,,feels good accept for a little back pain from lifting heavy mulch bags..
Any advice?
Posted 6/5/2019 7:57 PM (GMT 0)
I don't have any knowledge or experience with this, but please keep us posted what the hematologist says. When is his appointment? Maybe you could call his regular doctor for now and see if you can at least get some of these questions answered. I know the questions would be worrying me sick personally. Try not to worry until it is time to worry though...
Posted 6/5/2019 8:52 PM (GMT 0)
No way to say without knowing more. Is only his white blood cell count elevated, on what are they basing that assertion?

Are his lymph nodes swollen (around neck, under arm pits, etc)? Certainly an infection or allergy can send some numbers jumping at times. My dear wife works outdoors a lot, it's black-fly season, she comes home covered in welts from those bug bites, and her lymph nodes usually swell up from the bites.

WBC count can rise due to a number of reasons.
Posted 6/5/2019 10:58 PM (GMT 0)
I will let you know...he didn't make the appointment yet,,,and wants to go back to the family doctor he used to go to. As I said,,,he said he feels fine...and he is 51 and hates it when I bug him. with questions.
But as his mom,,,I worry myself sick.
Posted 6/6/2019 12:08 AM (GMT 0)
How high? Just a little over reference range or WAY over reference range?
Posted 6/6/2019 12:09 AM (GMT 0)
And although it's pretty unlikely to be lymphoma, to answer your question, yes, lymphoma is treatable.
Posted 6/6/2019 3:23 AM (GMT 0)
Look up this user (he used to be a moderator)
https://www.healingwell.com/community/profile.aspx?f=38&m=3753241&p=156555

he had lymphoma and he's okay now. The others are right though, I wouldn't assume it's lymphoma, it could be a lot of things.
Posted 6/6/2019 6:27 AM (GMT 0)
A couple of things to note.

Elevated white blood cell count can be due to the body starting to reject the remicade. It can also be due to a secondary infection that immune suppression allowed to fester. Even with the immune suppression of remicade, the immune system can mount an attack through other kinds of immune cells that remicade doesn't suppress. Over time, this makes the white blood cell count build and build.

Even if he hypothetically had lymphoma, stopping remicade would likely reverse it as normal immune function returns. However, it could also mean a return of UC.

If he has rashes on his body at all, this is an early sign that remicade is being rejected.

His doctor will run tests to be sure of what it is.
Posted 6/6/2019 6:29 AM (GMT 0)

MarkWithIBD said...
...
Even if he hypothetically had lymphoma, stopping remicade would likely reverse it as normal immune function returns...

You sure about that?
Posted 6/6/2019 8:43 AM (GMT 0)

beave said...
You sure about that?

If it's stage I or II and it's medication induced it can self-correct, with monitoring.

Lymphoma in biologic use is rare and not often severe. Once the drug is removed and the immune system starts to self-regulate again, it can undo the damage. Most medical-induced lymphoma from biologics is caught in stage I and II because patients are already being monitored so closely in their IBD treatment.
Posted 6/6/2019 9:21 AM (GMT 0)
Do you have any links to support that claim?
Posted 6/6/2019 12:08 PM (GMT 0)
I do not think the OP has shared enough to really sound like a lymphoma is going on. However, 66% are able to get the lymphoma into a remission after discontinuing remicade (and I would assume with sort of chemo going on).
Posted 6/6/2019 1:28 PM (GMT 0)
Thank you all for all your replies.....
As I stated, my son is 51, and he gets annoyed when I ask to many questions....He said his lymph glands are not swollen,,and they don't look like they are,,and he feels normal...went to work today.. He does intend to go see his doctor, but I keep nagging him to go as soon as possible
He doesn't know how high the count is,,,the doctor just said it was higher then it should be.
I'll keep in touch when I find out something.
Posted 6/6/2019 1:51 PM (GMT 0)
Understand you being worried and not having all of the information. For now, assume he's following doctor recommendations and getting it looked into, which is all you can ask. Even in a worst case scenario, it isn't a death sentence the majority pull through and get it into a remission. Still concerning though!
Posted 6/6/2019 8:04 PM (GMT 0)

beave said...
Do you have any links to support that claim?

Ask politely and I might.
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