Hi, Just curious if anyone has ever had experienced what is happening to me- I have active SLE- started a study drug (a B-cell regulator) 3 months ago along with my regular Methotrexate, cellecpt and plaqunil (and others…). I would often get a lymph node swelling right before a flare, but they would go down within a couple of weeks- about 2 1/2 months ago I noticed (as did my GYN) several swollen nodes in my groin (also some showed in my Mamo 6 mo ago)- Rheum sent me to a hematologist/oncologist (also have lost about 40 lbs with no known cause- feel full fast, bleeding issues that are new, sweats, wacky WBC cts, VERY tired)) who ordered scans- turns out there a large multiple nodes all over my neck, chest, armpits, belly & groin (& showed enlarged uterus w/ several fibroids). Going in for surgery Fri to remove some from 2 sites… The pain in the groin, armpit, a neck are bad. More seizures than usual as well, pain meds not working AT ALL- I’m hoping and praying this is just a lupus reaction to the study drug and not lymphoma, as I am used to lupus scary and labs are still showing as very active… Has anyone gone through this (beyond the typical lymph node swelling at start of a flare?)
Thank you in advance for any responses… Trying hard to not worry, but it’s been happening for too long now…).
Be well…
I had surgery this April to remove and biopsy large, swollen , painful glands and lymph nodes in my neck. .Fortunately no lymphoma , the results show" unspecified inflammation" which apparently is a very common diagnosis with lupus patients. .try to think positive thoughts and feel better soon:)xoxoxo
Hopeful, I've not been through anything as extensive as you are, but have had lymph nodes issues body wide, off and on, since my mid 20's. When some were so enlarged in my chest and upper abdomen, my Gastro scoped me, and took samples, tested for everything under the sun, found NO CAUSE! He is very good, and does procedures only 5 percent in the nation can do. Have never ended up with lymphoma, and I think the waiting for test results is always the worst part. Please ask that you be immediately notified of results, it is easy for your doctor to make a phone call if you go outpatient and are back at home.
Sometimes like you said, lymph node swelling can signal a flare, sometimes it also signals a serious or systemic infection of some kind. Have even had chains of them swell close enough to the surface to see after being on an IV in the hospital.
I hope someone else comes along soon who can better answer your questions. Remember to not stress, take deep breaths, and see what happens.
healing hugs,
Louise