Hi Crohnies!

[Sherri]

Hi there-

Briefly, my story is:
I was diagnosed with Crohn's in my ileum in 2006. From 2006-2007, I was on almost every medication to treat Crohn's, without any success in having a remission. Since 2007 I have been on Remicade. I am receiving 7.5ml/kg every 4 weeks. While not in a full remission, I do have about 1 1/2 weeks after each infusion where I feel "better" and my symptoms diminish. In February 2012, an endoscopy showed signs of Crohn's in my esophagus as well.

A few months ago, I began experiencing swollen lymph nodes on my head, neck and behind my ears. Given that Remicade can cause Lymphoma, I was sent to a Hematologist-Oncologist.

My current status is: the Hematologist-Oncologist feels that Remicade is causing "Lymphoma-like symptoms". My lymph nodes that are swollen aren't swollen enough to biopsy. On May 16th, I will meet with the Hematologist-Oncologist again to get the results back from a serum protein electrophoresis test (checking for cancer of my plasma cells). My fingers are crossed everything comes back okay and I can go back to just having to deal with Crohn's. (isn't that enough????)

I'd love to make some friends with Crohn's and would love to offer support to those who need it as well. I'd also love to hear from anyone who is experiencing "Lymphoma-like" issues from Remicade. (rare, I know)

I'm glad to be here.

 

[billyjoel]

Sherri welcome aboard we are very glad to have you here as a member!!! Sorry that you are having to deal with the Remicade issues... Just stay positive and continue to take care yourself!

 

[Angrybird]

Hello Sherri and welcome to the forum. I am sorry to hear that you now have this additional worry Whilst I did not have this reaction I too had an issue with the Remi where it gave me lots of symptoms and blood results that made it look like I had Lupus - was even admitted to hospital and had to have a scan of my heart.

I do hope all goes well at the appt and please let us know how things go - we are here for you! I take it your GI will wait to hear the results before discussing alternative treatment for your crohns?

Wishing you all the best

AB
xx

 

[Sherri]

Thanks for the welcome!
I'm not sure how I didn't find this forum sooner. I'm glad to be here.

@Angrybird - Yup, we're waiting for test results to decide the next step for Crohn's treatment.

 

[David]

Hi Sherri and welcome!

Oh wow, fingers are crossed that everything is ok and it's not Lymphoma Please keep us updated on that and let us know if there's anything we can do for you.

What symptoms do you currently experience? Are you taking any supplements?

I wish you well!

 

[Sherri]

Thanks, David. My fingers are crossed too. To say it's stressful is an understatement.
My symptoms began with swollen lymph nodes at the back of my head, neck and behind my ears. Other symptoms started sprouting up - chills, fever, night sweats. I'm currently not on any supplements. My doctor wants me on nothing aside from Elavil (an antidepressant we are using to treat joint pain) and my Remicade until we see what is going on for sure. I will have one more infusion before my blood work comes back and then we'll take it from there - ie: whether we are going to stop Remicade.

Thanks for the welcome!

 

[David]

I wonder if this is what you have: http://emedicine.medscape.com/article/1065086-overview. It's basically what Angrybird is referring to in her post above.

On the clinical presentation page:

Most patients with drug-induced lupus erythematosus (DILE) have 1 or more clinical symptoms of systemic lupus erythematous (SLE), such as arthralgias, lymphadenopathy, rash, and fever, and have no prior history of autoimmune disease. If a rash is present, it often manifests as a polycyclic, scaling, erythematous rash in sun-exposed areas.

Lymphadenopathy basically means swollen lymph nodes.

Not only can Infliximab (Remicade) cause it, but so can Elavil.

Let's hope it's what you have! (It goes away)

 

[Sherri]

This was actually brought up by both doctors and neither felt this was what was going on with me. I should have the results from the serum protein electrophoresis soon.

 

[kaley]

Hello Sherri and everyone in this forum,

How did everything pan out?

My boyfriend has extremely swollen lymph nodes, it started with a bump on the back of his head, then he found lumps behind his ear, and down his neck from the shoulder. There are probably about 8 lumps. He is also on Remicade and has been since March 2012. He is seeing an infectious disease doctor today after a stop at the ER, all his labs from the ER came back normal but I am concerned that he should be talking further with his GI who is still unaware that he is experiencing this.

Can remicade itself be causing this?

Thanks!