I have been a silent observer of this community. Let me give some background. I joined this community for my wife. She was diagnosed with PsA in late 2016. She started with Sulpha but it did not gave expected result. So now she is on Humira since Jul 2017. Everything was going great until beginning of Jan 2018. Early Jan my wife noticed a swollen lymph on neck just below the right ear. We booked an appointment with our doctor. By time we got appointment she also had fever, body ache etc. Basically flu like symptoms (FLU season was bad this year California). Doctor said lymph node might be swollen because flu, give it 8 weeks and come back if lymph node are still swollen. 8 Weeks fast forward her lymph node are still swollen but no fever, night sweats or weight loss. We do have appointment with Head and Neck specialist this friday.
But my question is more on C-word. I have read all statistics on this site. I know chances are rare. But I want know have Humira caused swollen lymph to anyone. Am I conclude C-word soon just based on 1 symptoms. Its just if someone you love in this situation you always want to eliminate worst case scenarios.
Thank You in advance
All recent articles and research seem to indicate that the lymph cancers associated with biologics were actually not to do with the drugs, but with rheumatoid arthritis. In other words, the bigger chance of getting lymph cancer that takers of biologics seemingly had in early trials wasn’t because of the drug but because of their illness. Interestingly, a study came out last year that suggested that PsA sufferers are more likely to have skin cancers - which might account for at least some of the skin cancers currently attributed to the biologics.
That doesn’t really answer your question, but I can at least say that Sulfasalazine caused at least three or four lymph nodes in my neck to swell. We stopped the meds, waited for them to go down, and then restarted, and the same thing happened again. One of them never went down to the original size, but it’s fine. So, drugs can make those kinds of changes, and sometimes lymph nodes don’t go back to normal size anyway. They call them “shotty” I think. I have another one behind my ear that’s like a lump of gristle. It’s been there since I was about fourteen. Never realised what it was even until a couple of years ago when I an opticians was trying to get my glasses to fit!
Did you not get told to stop the Humira while your wife had the flu? I thought all biologics should be stopped when we’re ill. That would have given the body chance to recover, and you might have been able to tell if it was the Humira or not.
Sadly we can’t eliminate worst case scenarios (if only!), but most here will tell you that PsA throws up all kinds of oddities that turn out to be “just a PsA thing.” But will keep fingers crossed for the appt, and hopefully you’ll come back here and tell us it was a false alarm.
Thanks @darinfan for your detailed response.
My wife stopped Sulpha back in July 2017 when we realized it was not working. She is only on Humira.
And yes my wife was asked to skip Humira dosage for that week when she had a flu and fever. Once she recovered from flu and had no fever we continued next dose at proper schedule. Our rhemy only wants us (my wife) to skip dose if she has a fever.
I was concerned because I never saw anybody mentioning swollen lymph node when taking Humira.
Anyway I am hoping doctors visit goes well this Friday and everything is normal.
Hi there! I had to stop taking Enbrel because of enlarged lymph nodes in various places. My dermatologist was very concerned. I am no longer able to take any of the TNF blockers such as Humira, due to the long term effects & how I reacted to Enbrel after 10 years of taking it. I am now taking Cosentyx & really enjoying it so far! Hope all will be figured out! Good luck!
I have a very slightly swollen lymph node in my neck - have had it for years (maybe 4?), and I can’t remember if I had it before biologics or after them, but it was definitely after onset of PsA.
I also get night sweats, fatigue etc, and my Rheumy did blood tests for lymphoma, however I was completely clear of that.
I do have an MGUS (slow-moving mutated cells with a very low chance that they, one day, in 20 years time, become multiple myeloma, and generally have no symptoms), and this was found in the lymphoma screen, so I’m monitored pretty regularly. There is no increased incidence of either MGUS or multiple myeloma with biologics, but there is an increase of MGUS (but not multiple myeloma) with autoimmune disease.
Whether the very slightly lumpy lymph node has any thing to do with this, I don’t know. Certainly the specialist who follows my MGUS thinks it’s irrelevant.
These things should always be followed up, but talking to my specialist, it seems pretty common for anyone to get the occasional swollen lymph node for no apparent reason, and probably more so for those of us with a rather dodgy immune system.
Thank you for your response. How is cosentyx different? Is it not a tnf blocker?
Thank you Jen75
I hope it’s just swollen lymph node in case of my wife and nothing major. After this weeks appointment we get a good news from doctor.
Humira is working great for my wife. Even though her past 2 esr are little elevated 28 and 31. But rheumy is not too concerned on that.
Its not talked about much but one of the symptoms of PsA is swollen lymph nodes. Interestingly enough to me over 80% of folks who have or have had scalp psoriasis have “reactive lymph nodes” especially in the neck. for most they come and go but for a lot they are persistent… “reactive lymph nodes” are also a sure sign of auto-immune disease.
Unless the glands become painful or dramatically change suddenly you can be pretty comfortable that it is NOT cancer (there would be some pretty dramatic changes in blood work as well if it was. ESR’s as high as 150. When they use ESR for routine screening, they don’t even get concerned unless it’s over 90) The biggest concern would really be that it is a sign of Humira getting ready to take a vacation… That slight change in ESR could be another subtle clue. You might want to ask the doc if a neutralizing antibodies (NAb) titre might be helpful…
Thanks @tntlamb. I always read your replies and they are always analytical, thorough and insightful. I really appreciate your input and its making me feel little less anxious now.
You might be on to something about scalp psoriasis. Humira is helping my wife’s psoriasis as well. But before Humira she did have scalp psoriasis.
According to rheumy my wife is in remission now. I will try to bring up topic about NAb and Humira going on vacation concern.
Thank You again!
Hi there! I’ve had psoriasis since I was 16 & I didn’t go on Enbrel until I was 32. I didn’t have swollen lymph nodes until a year after I started Enbrel. They got progressively worse & then other lymph nodes became swollen as the years went on. (I took it for 10 years) My Derm was concerned & that was the main reason she took me off of all TNF blockers. I was only diagnosed with Psa in 2017. I didn’t have joint pain until last year when I turned (43). My lymph nodes since going off of Enbrel are now much less swollen. I guess I’m just saying that everyone reacts to TNF blockers differently & having swollen lymph nodes was a big issue for me. It may not be for your wife, & I’m sure they’ll monitor it if it does! To answer your question from my earlier post: Cosentyx deals with the IL-17 receptor. Rather than give my own explanation in plain terms, I would google it. The website actually explains it very well. Plus, I always feel like everyone takes something different away from the science behind how it works, lol!
Thank you so much @jenat830
We just had appointment with head and neck specialist today. She did normal physical test and then ultrasound. So my wife does have swollen lymph node. It is 1.9 cm in size but according to doctor based on its location and ultrasound result she said it is not something to lose your sleepover. But just to be safe she took some samples for biopsy. We should have results back in week.
Keeping my fingers crossed and staying optimistic.
Update: Needle biopsy results were normal. But few days ago my wife notice another lymph node below the last one. Just went to head and neck doctor today. She suggested starting antibiotics for 2 weeks and do a follow-up. If things don’t improve she is suggesting a surgery to remove lymph node and do a full biopsy.
Anybody on this blog has any experience with that. Should we be worried?
Thanks in advance!