Remicade and sinus infections/lymph nodes enlarged?

[Mountaingem]

Hi everyone, I have been on one big rollercoaster since I had c. diff back in January. I keep getting these horrible sinus infections-I've had them for years but these are epic, and don't seem to totally go away.

I also keep running low-grade fevers and having sweats. My lymph nodes have swollen huge-the size of golf balls in my neck and chest area.

Anyone else been through this? Is this a sign that the Remicade needs to be dialed back? I am so fed up as the doctors don't seem to be listening to me about this, just doling out antibiotics, which with c.diff in my history is freaking me out a bit.

Please help. I'm trying to be positive but being constantly unwell is really wearing me down, both mentally and physically.

Thanks guys in advance!

 

[Sherri]

Hi

Hi there-

I (literally) just joined this forum and saw your post. I'm going through something similar - being on Remicade and having swollen lymph nodes, night sweats, fevers. My lymph nodes, however, aren't as large as your lymph nodes.

My GI immediately sent me to a Hematologist-Onocologist on an emergency appointment. I'm on a fairly high dose of Remicade and receive it more frequently than the "average" patient. I'm getting 7.5ml/kg every 4 weeks - and it's been that way for 4 years. So clearly, my GI was concerned given that Remicade can cause Lymphoma.

I saw the Hematologist-Oncologist this past Monday and was told that while I have many swollen lymph nodes, they are too small to get an effective biopsy. That leads her to believe Remicade is causing "Lymphoma-like" symptoms. She also did a serum protein electrophoresis test (checking for cancer in my plasma cells) and I will meet with her for results on May 16th.

To say I'm petrified is an understatement.

So - have your told your doctor your symptoms? If not, I would do so. Remicade is a scary drug simply because of the side effects and what it "may" cause. I don't want to scare you so I hope this reply doesn't. I'm just surprised to see someone in the same boat. I think that I would definitely contact your doctor about your symptoms as soon as possible.

Please keep me posted on how you are and if things get better.
PS: How weird - I suffered from c.diff in 2010 and have NEVER felt "right" ever since.

 

[PaulsPain]

This does sound like something your doctor's should be taking more seriously. Can you find somebody that will take you seriously? Do any of the doctor's have an explanation for the many swollen lymph nodes?

I had enlarged inguinal lymph node shortly after starting Remicade last fall. My GI didn't believe it was a lymph node because of how huge it was until my primary ordered and MRI proving it..... They (GI and CRS) thought it was caused from the fistula. But I always wonder since it coincided with starting Remicade.

Wishing you the best. And hopefully you can get some answers. There is nothing worse than having to deal with these drugs and then have doctor's ignore potential side effects.

 

[Mountaingem]

Thanks guys. I went to the doctor today, and she's sending me in for a CAT scan next Friday. It is scary on Remicade, you just never know what it could be.

I guess it's just wait and see for now.

@Sherri-You are in my thoughts-stay strong!

 

[David]

I'm sorry you're having trouble Mountaingem. I wonder about the possibility of Remicade causing Drug-Induced Lupus Erythematosus (it is known to):

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.

Approximately 50% of patients have constitutional symptoms of fever, weight loss, and fatigue. As many as 90% of patients with DILE have severe but usually noninflammatory joint pain; however, synovitis may be present. Arthralgia is often the only clinical manifestation of DILE. As many as 50% of patients with DILE experience muscle pain (myalgia).

Source.

Lymphadenopathy is basically enlarged lymph nodes.

IF this is what you're experiencing, the good news is it goes away. The bad news is it goes away when you stop the medication.

 

[Mountaingem]

Thanks David. Yes I have been experiencing this type of rash, and athralgia and muscle pain as well. Well, this at least gives me a place to start looking; I'll give my Primary this info. She's very open-minded so I know she'll take it seriously.

If it is DILE it may be something I have to deal with, I'm afraid. I have AS as well as fistulas bith of which were unbearable before Remicade; I guess it might just be a trade-off.

 

[Mama & Mac]

Hi I'm also new to the forum,

But I just wanted to say hi, and to let you know I've also been on remicade and had a lot of problems with it as well, same issues as you (other than the c-diff) and the doctors stopped administering the drug to me. I'm sorry to hear you are having a rough go....I hope things get better soon for you!:hang: