I'm sorry to hear this. I went through something similar last year that culminated with a lymph node biopsy. Luckily, mine wasn't cancer.

What is it specifically that makes them suspicious? Bloodwork? Which test?

Continuing plummet of white blood cells and specifically absolute neutrophils, along with swollen lymph nodes that I just discovered and brought to my rheumy's attention during Friday's visit. At that time, she ordered new blood test (previous was April) and suggested I see my PCP about the nodes.

What happened after your clear biopsy? Were you able to resume RA treatment?

They did some more blood tests, specifically Free Light Chains. Both were elevated in me but the ratio was in the acceptable range. They still did the core needle biopsy of my right axillary lymph node just to be sure. It was determined that I have lymphadenopathy which is common with autoimmune diseases. It was a scary time and I was off my meds. They always stop everything and act as if it is cancer as a precaution. It is a risk and I knew it when I started these immunosuppressants, but I knew the risk was minimal. I just kept telling myself that through the whole process.
We decided my meds were failing and changed up my cocktail after we got definitive answers. I have an Oncologist/Hematologist because I get IV biologics, so he monitors this stuff closely. So far, so good.

I hope you get a similar, harmless test result.

I'll pray. I HATE these scares.

Ditto WarriorGal's sentiments. Thanks for sharing your "good" story Kimhurts. Hoping SusieG gets a similar story and soon! Keep on, keeping on gang!

Kimhurts - can you share what IV you're receiving?

Kimhurts - Also, were your lymph nodes enlarged?

My lymph nodes were HUGE. It was like having a bunch of grapes under my arms. Sometimes they were enlarged in my groin enough that it hurt to walk beyond the RA. I was on Xeljanz and MTX at the time. Xeljanz didn't cause it. It just stopped hitting the right things to knock down the inflammation. The docs stopped everything until the tests were done. Once I was cleared, I started back on MTX and now Actemra by IV. Oncologist runs bloodwork every 4 weeks before IV. My lymph nodes are still inflamed, but not like they were. Evidently, this is going to be a chronic condition. Even the nodes at my neck get sore and slightly puffy.

Fun times, but much better than cancer. Odds are, you are going to have lymphadenopathy too.

Thanks for the info and fingers crossed! I can't take mtx, and probably won't proceed with kevzara if side effect lowers WBC like Enbrel. Maybe infusions are in my future. Xeljanz scares me for some reason. Speaking of scared, I called office of Thursday appt doc and they answer, "cancer center". Way to go...

I had a similar story, my Rheumy found elevated blood proteins, the one elevated was IgM, but she wrote IgA in her notes and freaked out! I had all this imaging for bone cancer, but turned out IgM is another type called Waldenström’s Macroglobulemia, they did a bone marrow biopsy and found cells. It is “smoldering” so they are just watching it. They did a study in Norway, tracing WM to inflammation. I lost 4 pounds and my blood protein numbers fell to a 2016 number, so hopefully I can control it with diet. My hematologist could not believe that diet would reverse cancer! But now he is a believer...

This disease is so faceted! Jon, these #s of mine are plummeting absolute neutrophils.

I will put you in my prayers Susie. Please keep us posted!

Any updates on you, SusieG?

I just came back from seeing the Oncologist at my cancer center. I got my IV Actemra and blood work. My IgG and Free Light Chains, both Lambda and Kappa are significantly elevated even though the ratio is still ok. He is concerned and retested today. He is sending all of this to my Rheumatologist and wants some kind of note back. He has also ordered a bone marrow biopsy. I had one 12 years ago, but he thinks I need another one. He isn't convinced this is just non-specific inflammation. They may stop my Actemra. My MTX was already stopped.

I hate RA.

Hope you got some good news.

Oh no! I don't see oncologist until Thursday and I imagine will learn nothing but maybe have more tests ordered. Who knows. I've gone from holy crap they got me an appt within a week (instead of initial 2 months) scare to seeing an oncologist doesn't guarantee a cancer diagnosis. My well here at home collapsed over a week ago and I've been dealing with no water, a new well being drilled and not finding water even after 600 ft. It's been a great distraction from thinking of Thursday's appt. Sorry to hear of your ongoing struggles Kim hurts. We've all got each other tho, right ? Keep me in your loop and I will the same.

So it could be enbrel caused or leukemia. So off meds for 7 weeks, re-blood test with more detail after that. Since my WBC was ok way back when, enbrel caused looks likely