Weird Experience on Remicade-Anyone Else?

[stateofmind]

Hi all,

Long term Crohn's patient here. I was diagnosed at 14, and I am now 36...22 years with it. Nothing surprises me anymore.

I was on Remicade for 12 years. When I was pregnant and breast feeding, I stopped taking it (approx 2 yrs). My last infusion was Aug 2012. I have not taken it since as I experienced strange symptoms about 3 weeks after the infusion. My gastro suspects it could have been serum sickness as my body could have antibodies to the mouse protein now. He put me on prednisone to put it in check (60 mgs for 4 days, 50 mgs for 4 days, etc) I felt much better while I was on the pred but the nodes did not go away. It has now been 6 months, and I still have the symptoms. I have "achy" nodes throughout body in the neck, auxilla, and groin. I had MRI done of neck, and I have nodes 2 cm contiguous bilaterally almost to my supra clavicle node on left side. I am tired, sore throat that waxes and wanes, and get sick easily with bacterial infections etc even though I am off the autoimmune drugs. My 2nd MRI was the same as the 1st, but it done while on the high doses of pred. The pred could prevent nodes from growing if it is lymphoma. He want to watch and wait. I am now in the process of a cross country move, and I won't be able to revisit my health issues for another month or so. I am going to push for a biopsy when I do get down there. I want to figure out what is going on so I can treat what is undiagnosed, and I want to treat my crohn's as it is starting to flare again.

So my question for the forum is whether or not anyone has experienced something similar to my experience while taking Remicade. If so, did the Drs ever figure out what it was?

Thanks in advance for all of your help!

 

[tots]

I have not had that happen

Wouldn't your blood work show if you had lymphoma?


lauren

 

[AlliRuns]

I agree with Tots, did they do any blood work? I didn't think lymphoma was difficult to detect.

 

[stateofmind]

Hi Lauren! Thanks for the response. The only way to diagnose lymphoma is through biopsy. Blood is sometimes normal and sometimes not normal upon diagnosis. There are so many types of lymphoma, that progress at so many different ways and speeds. From what I can gather, the majority of the time anyway (but not every case), that the blood work comes out wonky in advanced lymphoma. Due to all the variable and types, that is why biopsy is the only definitive method of diagnosis.

I personally am simply hoping it is some random autoimmune response (or even better it just goes away on its own!). If it is unexplained autoimmune, then whatever I am using to treat my Crohn's will treat that too

 

[stateofmind]

I wish lymphoma was easy to detect. It just boils down to which of the 60 types (I think I read 60) that you have.

Yes, they have done blood work. High WBC (17k) due to demarginization of the pred when I was on it. High WBC (13k) this last time but hoping only due to bacterial infection in throat. SED is at 19 this last time. Could be due to my Crohns and not anything else? The only way to know for sure is biopsy. I just have to find a Dr. to do the biopsy when I move.

I was just hoping to hear that someone had experienced something similar and they could share their experience. With positive feedback of course