The past few weeks have been a real pain in the neck literally. The lymph nodes under my jaws and neck are swollen and quite painful. This is not uncommon when fighting a cold or flu but I have no symptoms of any such infection. The pain was bad enough that it woke me up early this morning. I’m not too concerned as I’ve been down this road before.
About a year and a half ago, while taking Humira, a series of lymph nodes from under the jaw, down the neck, across the chest, and under the armpits were swollen and at times, quite painful. My rheumatologist called it lymphadenopathy which simply means “disease of the lymph nodes.”[i] This rather general definition doesn’t get at the cause of the changes in the lymph nodes. After a physical exam, my rheumatologist said that I probably had some sort of infection caused by the immune-suppressing medications used to treat RA. This made sense at the time since the lymph system is part of the immune system and includes liquid containing white blood cells that attack foreign invaders like bacteria and viruses.[ii]He called for a chest x-ray to rule out sarcoidosis[iii] which is an autoimmune disease of the lymph system and commonly shows up as many swollen lymph nodes deep in the chest. The x-rays were negative and he told me to keep an eye on the nodes. After a few months, I returned to the rheumatologist and told him that the nodes were the same. He found some nodes that were rather large including one being 3 centimeters. He called for an ultrasound to image the culprit. The ultrasound technician could not find it and she called in the radiologist on staff that day. She poked and prodded and moved the ultrasound wand all over the place without finding anything. She mentioned that a 3 centimeter node was rather large and wanted to be sure that she didn’t miss it. I went away not thinking about it much anymore. After another 6 months, I mentioned them again to my rheumatologist and this time he recommended that I see a hematologist since they are experts on blood and lymph system disorders. Little did I know that hematologists are also oncologists…doctors who treat cancers. That sent the stress level up a bit since I knew that Humira and other immune-suppressing treatments for RA were linked to higher levels of lymphoma. The oncologist was wonderful and very reassuring stating this is was likely not lymphoma but he wanted to rule it out. He ordered a CT scan with contrast and ran a large amount of blood tests…9 vials in all! At the follow-up, he told me the good news that he could not find anything and didn’t want to do a biopsy of the nodes. He did find an increased level of rheumatoid factor (RF) in my blood and said that I was probably experiencing an increase of disease activity and that lymph nodes can be impacted like this in RA patients. According to rheumatology researchers,
“Lymph node enlargement is
an important physical finding associated with RA and SLE
[lupus] disease activity. Atypical locations and unusually
large lymph nodes should raise clinical suspicion of another
underlying disease.”[iv]
So it seems that lymphadenopathy is common with autoimmune diseases and that makes sense given the fact that the lymph nodes are part of the immune system. I’ve been down this road before and won’t think too much about it. But I’ll keep an eye on things since starting a new combination of Actemra and Imuran both of which impact the immune system. I just wish it wasn’t such a pain in the neck!
Sorry you’re suffering, but glad it’s been thoroughly investigated! I suppose it’s not surprising that one can get swollen lymph glands related to autoimmune disease, but I’ve never seen anything about it anywhere before, so thanks for a very interesting post!
Yes, it’s hard to find much info on the subject.
When I was a kid with JRA, any medical exam or check up by a doctor always started with the palpitation under my jaw to check my lymph nodes. I’m glad that it seems that yours are probably just having a tantrum in reaction to something not too serious.