Kikuchi Disease

[ebird33]

i did not know under which topic to place this question but put it under Lupus as links have been suggested between the 2 diseases.

i want to know if anybody else has suffered from Histiocytic Necrotizing Lymphadenitis AKA Kikuchi's Disease.

i know this is extremely rare but i have had it and would like to hear any body elses experiences with the disease. i found it extremely hard to manage as there are no resources available and my doctor had never heard of the disease and did not know how to help me. id also be willing to share my experiences with anybody else suffering with the disease.

[mls1248]

I have the exact same symptoms. I've had swollen lymph nodes in my neck for a year now which were diagnosed by a needle aspiration. I am from the UK and have just finished my degree, which seems to be a similar trend with the disease however it does seem to manifest most commonly in females under the age of 30. I am now 22 and got the disease at 21. My other symptoms are raynaud's phenomenon and a hyperactive thyroid which has led to problems such as fatigue, feeling down and insomnia.

How are you now, have your symptoms persisted and are you still suffering from kikuchi? My biggest concern is that the disease will progress into lupus (SLE) therefore I am currently being monitored by my local hopsital's rheumatology department. I do not take any medication (apart from levothyroxine to sort my hyperactive thyroid out). Many thanks, Shelly.

[mls1248]

I have also had it for a year now (diagnosed in 2014) and would appreciate any advice / knowledge on this obscure disease and how it has impacted your / others lives. Please do contact me!

Thanks, Shelly

[VanKing]

I was finally given my results yesterday. I have Kikuchi disease. Started with painfull hard node in my parotid gland in mid april. No one knew what was wrong. My inflamation markers were up but all other blood works ok. Tested for hiv, cat scratch, ebv, cytomehgolavirus, syph... everything!  They all came back clear. Had two FNA biopsy - inconclusive. Finally had my biggest  lymph node removed for full biopsy and has come back as kikuchi fujimoto. I didn't think I had other symptoms (other than sore lymph node) but I am often running a temp and am uncomfortably warm at night *(often sleep with fan on and just a sheet in WINTER, to the amusement of my partner). I also often have severe headaches/migraines and random shooting pains in my body.

27 y/o female in New Zealand (European descent)

[raghu18]

It's been almost a yr now and my daughter is fine. Every so often she would get these rashes on the limbs of her fingers and toe, looks like a calluses and they itch, we tried taking her to the rheumatologist however they only want to see her when the rashes are present however it takes about 2 weeks to get an apt wt them. We stopped trying.

[tschicago82]

I was diagnosed with Kikuchi's by Mayo Clinic in Minnesota, USA in March 2012. I had a lymph node biopsy five years  earlier with the onco-surgeon thinking it was cat scratch disease. Funny enough, I'm never around cats, so it didn't make sense. After I had them removed, I was fine for five years, and then it presented again in a much more aggressive fashion in my neck. This time it was two days by the time two nodes fused and matted on to my neck muscle. Talk about pain! Anyway, they couldn't figure it out here, so my doctor recommended I go up to Mayo for a complete workup. They said right away that it didn't look like cancer.

Oh, I'm 32 and of Indian descent. So my first onset was at 27. I live in the US with very good docs and no one knows what is going on. I think they think I'm a hypochondriac. It's really annoying that I deal with this alone, so I'm glad to know there is a community out there.

My symptoms are swollen lymph nodes, general fatigue, sore and tired muscles, joint pain, and now the new ones in this flare up are splinter hemorrhages under my fingernails and a rash on my back along with general muscle fatigue and night sweats.

I am waiting on test results for SLE and RA and need to find a good rheumatologist in Chicago because I need to go to someone who wants to help me. My PCP's are trying, but they know nothing.

I'm scared about it turning into SLE. I get sad thinking about it and feel alone.

My doctors keep trying to push prednisone on me but I keep refusing because I think my mood will be completely affected. I may try the flax and omega 3s. Has anyone ever found a doc or research institution wanting to do more testing? Maybe we can find someway to raise funds for a study?

[sanj_22]

Hi,

I read all comments and want to share my experience 1 month ago it started with right cervical lymph node swelling,pain and redness and bit warm that particular area.
I had only 1 big swelled lymph node on right neck and rest of the lymph was small and painful, confirmed by ultrasonic neck sonography. In biopsy it confirm as Narcotizing lymphadenitis. Please can anyone suggest me is it Kikutchi disease or some thing else.
I had mild fever,few red pimple kind of stuff and swelling in cervical lymph node. Currently not taking any medicine as no doctor can recognize the problem.
Again after a month I am feeling bit feverish and through out pain in back and right shoulder.
Please suggest me the best way...

Thanks,
Sadhana