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.

[Zane08]

Hi All

It's reassuring to hear all your experiences of Kikuchi's. I'll share mine:

My name is Zane, I am of Pakistani ethnicity and I live here in the UK. When I was 23 (5 years ago) I had Kikuchi's for a 6 week period (I am very fortunate compared to some of you!)

Initially I felt very unwell for one week with high temperatures, fatigue, malaise, general muscle pain and probably worst of all night sweats. I had painless large lymph nodes appear in my right neck, axillas and inguinal area. I saw the GP who contacted the infectious diseases department.

I was admitted to hospital and the doctors were initially looking at TB/lymphoma.

Whilst in hospital I developed hepatomegaly and splenomegaly.

A lymph node biopsy was diagnostic for Kikuchi's and I was discharged.

The only medication I received throughout was paracetamol (acetaminophen for some), ibuprofen and cyclisine (anti-emetic). After a few days they discontinued me from ibuprofen due to some clinical reason. (Maybe my clotting factors were off?)

After diagnosis I was discharged and advised it is self limiting and I will get better without the need to stay in hospital.

My symptoms persisted post discharge for another 2 weeks. Interestingly there were some new ones: my knees swelled up (massive! I couldn't walk!) and I had the worst migraines for a few days (I had never had a migraine before).

I got better just in time to pass my dentistry finals. I missed honours by one mark! If only I hasn't got Kikuchi's!

Now five years later, and the reason which brought me to this website, is that I am getting similar symptoms again unfortunately.

I have had pyrexia of 38-39C (100.4-102.2) for a week now. I have large lymph nodes on both sides of my neck but interestingly they are painful this time. General muscular pain, night sweats etc.

I have put off going to the doctor until after a week just to rule out a viral infections but the symptoms at a week are getting worse.

I hope this episode of Kikuchi's is as short as my first. I wonder if I will get away without taking steroids or hydroxychloeoquinone again this time.

I'll keep you posted.

Best wishes

Zane

[duchessfergie]

Hello, all.  I first found out I had Kikuchi's after I had a lymph node removed in 2007, when it was biopsied.  What had led up to that was prolonged flu-like symptoms.  Even after my lymph node had been removed, I was still really sick for a while--like three total years.  Steroids didn't help.  The worst parts were the fatigue, headaches, night sweats, brain fog, and the dizzy-ish feeling I'd get.  The thing that did cure me was getting pregnant with my oldest son, in 2009.  The kikuchi's went away and stayed away....until a year ago.  Again, I got what seemed like a lingering flu and it's all come back.  I don't get quite as dizzy as I did before, and the headaches aren't a prominent feature, but the fatigue, dizziness, night sweats, and brain fog are there.  I had a lymph node swell up right under the angle of my right jaw.  It was bad enough, it hurt excruciatingly to open my jaw and I went to the emergency room.  The doctor gave me steroids and heavy painkillers--luckily, it went down enough to not need surgery.  This time around this rheumatologist gave me Plaquinil.  The past few months things had started getting better again--I started feeling like a million bucks, and even started running again.  Then, out of nowhere, it's back again.  The rheumatologist has said since I don't currently have any lymph nodes swelling that my symptoms are out of his lane, and I should go back to the neurologist to discuss my dizziness/fatigue/fogginess.  I don't know about you, but I get so weary of bouncing around doctors!  

It's downright depressing to deal with this, since it seems like no matter what I do, I can't make it better.  I eat very healthy, I exercise when I have the energy, and I have a great family and a great job.  I feel like a burden on all of them and I'm just frustrated with the lack of definitive answers.  Right now my rheumatologist isn't certain that the kikuchi's is a subset of a bigger issue, or vice versa.  He doesn't see my other symptoms as indicative of Kikuchi's if I don't have any actively swelling lymph nodes.  Has anyone else found they've gotten other related diagnoses?  

[Atrag33]

Im a 29yo male, and today I was diagnosed with Kikuchi’s disease after three separate lymph node biopsies, the last being a complete lymph node  excision.

My symptoms started with enlarged lymph nodes (2cm) above by left clavicle (supraclavicular nodes), and were followed by night sweats, mild fatigue, anxiety and aches in other lymph regions. My doctors (and I) suspected lymphoma after finding rare cell abnormalities via fine needle aspiration biopsy and core biopsies of my lymph nodes.

I’m so thankful my team was persistent in their diagnosis before suggesting treatment. From what I’ve read, the biggest risk associated with Kikuchi’s disease is being misdiagnosed with lymphoma and undergoing unnecessary treatment.

I’m following up this diagnosis with tests for SLE and other disorders that may be associated with Kikuchi’s, and a consultation with a rheumatologist or hematology oncologist, I’m not sure yet. I think they want to perform additional scans of my chest to look for more enlarged lymph nodes that may be problematic.

I know this is an extremely rare disease, especially for North America, and especially for white males. Seems like I’m just that diamond in the rough.

There’s not much information out there aside from a few medial case studies that I can find, and this is the first recent discussion I’ve found. I don’t know yet if this is notable, but 8 years ago I spent a week and a half in the ICU with meningitis, and 5 years ago I had three instances of alopecia spots on my head that appeared without cause. Perhaps there’s a link (autoimmune disorder?) between the rare issues I’ve seemed to have as a young adult. Hopefully this is the last one.  

[Atrag33]

It’s so interesting to read everyone else’s account of KFD. I too have random shooting pains throughout my body, although I can go weeks without any. The most painful ones are in my head. I have described it to my PCP and got the “yeah well I don’t know what to do about that” look in return. I just stopped telling my Doctors about it.

I have also had bouts of mouth ulcers most of my adult life. Someone else in this thread mentioned it, and I supposed that could be another indication of an autoimmune disorder. Who knows though, maybe it’s a coincidence.

[Se12]

Kikuchi disease needs to be treated by a rhematologist- doctors of auto immunes. Kikuchi can only be proven by biopsy. I had undergone a biopsy after being diagnosed with symptoms like high fever for almost a month (it exceeded 104.5 sometimes), lump in the neck, back pain, not able to walk, loss in appetite etc. I was in hospital for 6 days and also had ultrasound of abdomen and neck. I took medicines crocin initially, then bruffin, then neproxin for fever. When my fever was not settling down, steriods made me stable. Even undergone a CT scan. It is very rare and its relaxing to not feel aliented as many people have this.
Hope this ans helps :)

[jk319]

ebird33,

It must have been several years since you were diagnosed with KFD.  How are you doing?

My wife has had the disease for a year now.  Her symptoms have been gone for about 6 months, but I'm afraid that they are back since just recently.  Low grade fever, fatigue, pain in the back of her neck (which I thought was due to her pillow), and pain in her fingers are some of the symptoms that she has currently.

Thanks,
John

[ICdragons]

Does anyone know what happens to the infected Kikuchi disease lymph nodes after the disease is gone? I never had a diagnosis, but I suspect that I had Kikuchi, now years later, the lymph node is still palpable on my neck and "rock hard". Do Kikuchi nodes heal or scar to death?

[Hdlgf]

Can anyone recommend a physician to assist in the treatment of KFD

[mbenitez15]

   Hi, I'm 15 years old and I was diagnosed with KFD this month. I started out with swollen lymph nodes on the side of my neck, high fevers, nausea, fatigue, rash and I was really dizzy. It all really started the end of August. SI had no clue this disease even existed. I was hospitalized for two weeks but they had to transfer me to another hospital since they couldn't figure out what was wrong with me. They tested me for a million things. It was a very painful experience and I never want to have to go through something like this ever again.
    I got out of the hospital about two weeks ago. While in the hospital I got even worse. But then I started getting better. Once I got home I started getting really bad joint pain and it has gotten better but I still have a little pain. My doctor wants me to take some medication but I think It'll get better on its own. I'm so glad I found this page. I thought I was alone and no one could understand my pain. I'm still really worried this could turn into lupus which was what the doctors thought I had first. But for now I think I'll be ok. I'm  still really tired and dizzy at times. Is it likely to come back since most people said it did for them? I just want to get better. I haven't been in school for over a month and I've been getting homeschooled but it's stressing me out. Btw does stress have to do with any of this?
I'm just so worried.

[Ree0519]

Hello, I was diagnosed with KFD in May of this year after having some of the very same symptoms as most of you, nausea, fever, night sweats, fatigue which started in late march of 2015.

Since my biopsy diagnosis I have continued to have lymphatic swelling in my posterior triangle and supraclavicular area, not only have my remaining swollen nodes gotten bigger, I now have additional ones coming up in the same region and also on the back of my neck(all on the right side) and my nausea is becoming more constant again and the fatigue never went away.

My doctors didn't really tell me anything about it just I would get better and not to worry but here I am 6 months after the onset of my issues and I seem to be getting worse. I am also getting headaches pretty regularly and muscle pains in my back and legs. I am a 37 year old single mother and this has made life more difficult to say the least.

I have debated on going and seeing another doctor but I've been told to just wait it out, nobody really seems to understand how tired and not well I feel. I have been trying to stay positive but would really love to have a professional acknowledge what I have going on and help manage my symptoms I suppose.

I hope everyone is well, and I truly appreciate everyone sharing their stories.

[joelk39]

Hi, I have been diagnosed with KFD today, after worrying myself sick for months about lymphoma. I had a ~2cm matted lymph node on the left cervical region of my neck. Over the months, I expereinced low-grade fevers, on-and-off night sweats (not drenching), general malaise, and “burning” headaches.

For whatever reason, the headaches for me were the absolute worst part. It felt like I had meningitis but MRI confirmed nothing in my head. This has been going on since March 2015, but after the lymph node biopsy I am actually feeling a bit better. I can only hope that the doctors made the proper diagnosis, and it’s KFD and not lymphoma. The ENT doctor had never even heard of this disease. Also I am a white male living in the USA, so it’s quite rare for me to have this. I am however extremely fortunate that I don’t have cancer! There is a large lymph node above the incision, but its ill-defined and the doctor says it feels normal (possibly an inflammatory response to the surgery, which was only a week ago). I will be going back to see the ENT in 3 weeks.

Anyways, this disease has caused me a great deal of stress and worry about lymphoma… and even though I’ve been through a lot with the symptoms, I am extremely glad I don’t have cancer! I'd rather deal with these symptoms than have to go through chemotherapy... I am very fortunate to have a pathologist that was able to make the proper diagnosis.

[BAnirtak]

This board is so invaluable! I was diagnosed with Kikuchi three months ago after a surgical biopsy. It was a "diagnosis by exclusion". I hadn't had any fevers but my lymph nodes on the left side of my neck were so swollen (like golf balls) and had a very low WBC count this was for about two months. After many tests, xrays, MRI's, I had the surgical biopsy, and my WBC count went up to almost normal almost immediately, but I just had my blood checked 3 months post surgery, and it is low again. I don't have auto-immune markers, so now trying to find out if this is just part of the Kikuchi process or not as it is concerning.

[mls1248]

Hi,

With regards to the stress levels, I certainly believe that my diagnosis was stress related. I was completing my final University degree exams when I first noticed the lumps in my neck (which was later confirmed as kikuchi) and the disease has persisted for a year in which I have been a trainee teacher, therefore with an intensive work load. How are you now?

Thanks, Shelly

[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

[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

[twototangle]

I was diagnosed with KFD 6 years ago and it has reoccurred. I have chronic fatigue and general malaise. My doctor just thinks I am depressed and keeps forcing anti-deps down my throat. I have seen two consultants - the final one has suggested I take prednisone. What I find most frustrating is the fact that I am so unwell and so tired but everyone expects you to carry on as normal. I have never been signed off work and I too get the "you are always feeling sick" from my colleagues. My GP doesn't seem to think it is a big deal but I can barely function anymore. Hoping the prednisone will work - I still have lumps in my neck down to my collarbone but have just read the side effects and I certainly don't need anymore weight gain or mental confusion! If anyone ever hears of a doctor specialising in Kikuchi in the UK would be very interested to know

[raghu18]

it only got worse the beginning of May* wt rash on her entire body,  fever 103 - 105, pain. mouth burst up

[raghu18]

Hi, my 9 yr old daughter was just diagnose wt the Kikuchi disease about a week ago. She was sick wt fever since the last week for March and it only got worse the beginning of March, then she was hospitalized for 11 days. She also had the rash really bad all over her body. Now she complaining of stomach pain and pain in the groin. Her Dr said to keep an eye on her to see if it gets worse...  One minute she's fine the other not. How was your experience and how is your son doing? They've stopped my daughter from all outdoors activity gym etc. she's a dancer and swimmer and takes music lessons...at first she was ok wt don't doing any of her activities but now I can see its taking a toll on her as I find her crying at time saying she's not a normal child.

[saveagent]

Hello, try to use sunflower cool press oil to clean your mouth 3 times per day, sure one time is weak up time. It calling oil pulling. Each time is one spoon. (table spoon). And you can send me email save_agency***@****

[Simba2013]

I think you definitely need to be started on treatment.Ask your doctor?I was started on Plaquenil,prednisone and NSAIDs.IPlaquenil really helped.