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.

[AndreiaS]

         Cool topic,easy to find!!!! Let's please talk about it! My husband has Fujimoto since march this year. if u are interested i can send u on mail all the info that i managed to look up until now.it was not easy, but i work in a hospital and that made "some things" possible.I could also use any information from u. We don't really know what to do after all this time. We tried everything.
        But what about u? Do you still have the disease?and what about fever? where did u find your first lymph node? My husband had it under his arm, what we heard is strange and unusual.Can u get back to me, please? Thank you!

[ebird33]

Hi Andreia

im so glad you wrote back, ive been waiting a long time to talk to someone about it.

i have had kikuchi for a year now, i was diagnosed in december 2009. i have not been able to find much information on the disease at all, i have only read what is on wikipedia and sites like that.

in january i thought that i didnt have kikuchi anymore but unfortunatly i am still experiencing symptoms every few weeks. all the information says it should go away within 6 months but not with me. i dont have a fever but i get pain in my hands and knees and sometimes i still have swollen lymph nodes in my neck. i also get very tired and have to sleep a lot.

my lymph nodes were all in my neck, very very big and sore.

my advice would be to treat the symptoms. it has been hard for me to deal with this disease as i am only 19 and i live alone and study at university. it has made life very difficult. but recently my doctor gave me NSAIDS (non-steroidal anti-inflammatory drugs) and they help a lot. also accupuncture is amazing for swelling and pain!

where are you from? i am australian. maybe you can send me the information that you found at ***@****

thank you very much! sometimes you need to talk to someone who is going through the same thing as you are.....

[AndreiaS]

          Hi!!! Thanks so much 4 writing back! Ur email is unreadable :)), here is mine so we can chat on mail too: ***@****
       I'm from Romania, 27 years old, pharmacy assistant, and in my 3 year of law school.
i have a few information witch i could send u on mail as soon as u contact me!
           how did u get to be diagnosed?my husband had a biopsy in march but this disease being so rare we had to do a lot of differential tests like the one for lupus eritematos, yersinia, histoplasma, an a lot more.in may there was a workshop at the institute of oncology with pathologists from other countries.the one from Barcelona, Spain gave us the final diagnose of fujimoto.since than my husband took also NSAIDS but the lymph nodes are of the same size as they were  6 months ago.he has the nodes around the neck, under the right arm, between the lungs (mediastinal area) and around the shoulders.what about u? u have the nodes only on the neck?did u have a computer tomography? we did it 2 times and the results were the same.
             please write more! i'm so glad i found you!!!!thank you for writing back!

[AndreiaS]

hi!!! i found a very important information that could help u!!!! search on google for LYMPHATIC CLEANSING and  DETOX!!!!! and read everything u find.i can't belive i found this so late! mail me if u have the time so i can send u more information.hugs!

[AndreiaS]

PS. i realised that Kikuchi disease affects the lymphatic sistem, that has an importent role in getting wrid of the body waste!that coul be it! what do u say?

[ebird33]

hmmm i cant read your email either!! strange... my email is emmabird1991 @ hotmail.com without the spaces, maybe that will work.

i feel really bad for your husband he sounds like he had it much worse than me!! i was also diagnosed by a biopsy, i was lucky i had very good doctors so i didnt need to do anymore tests. it was very easy to be diagnosed for me, im sorry it took so long for your husband.

when i had the biopsy my nodes stopped swelling, it seems very strange that your husband's lymph nodes are still the same size, i would do something about this. last week i went to see a rheumatologist to see if he could figure out why i was still feeling sick and he was able to tell me that i have an arthritic condition called fibromyalgia. maybe you should take your husband to another doctor to see if he has another disease. a lot of the time people get kikuchi disease because they have another hidden disease. in my opinion your husband should not still have swollen lymph nodes! i never had swollen lymph nodes in my shoulders or under my arm only in my neck, but the disease affects everybody differently.

i really urge you to try and see another doctor, just complain! tell them that he is not well and you need to find out why, there is no point in suffering! i do not know what the romanian healthcare system is like but i would keep trying and trying until you find out why his lymph nodes are still swollen.

i do not trust lymphatic cleansing or detox diets. i think its really important to eat well when you have kikuchi disease and i dont think you should cut anything out of your diet. i would make sure you eat a lot of fish because the omega 3 helps with swelling. i would just eat healthy food and look after your body and that will probably better than any detox.

i do agree with you about the lymphatic system getting rid of waste.. it makes sense that if your lymph node system is down then your body cant get rid of toxins... though im not sure how to fix this... i really believe in chinese medicine, its helped me a lot. accupuncture and chinese herbs i think work really well. if you have chinese doctors in romania maybe you could go and see one!

i feel really bad for your husband... i know how bad this disease is. its very unfair!

[AndreiaS]

hi! i've been trying to contact u on mail, maby u didn't get my message.how are u doing?
i've got good news, that might help u too, at lest i hope so.i have found a doctor who had a kikuchi case 15 years ago, and he told us to find a medicine called: TARGRETIN , it is made in the U.K. by Eisai Ltd.ask ur doctor about this.a few patiances have been treated with this and they had great results.that's far as i no about this.i'll dig up more and let u know.try writting me on mail, maybe u can find me in your spam box( it happened many times because of the mail adress).
take care!!!waiting to hear from u!

[DLHH]

Hi there,

I was diagnosed with Kikuchi's last month after a biopsy on my enlarged left cervical lymph node. Symptoms included fatigue, low grade fever and upper respiratory infection. I tested positive for Epstein-Barr virus and antinuclear antibody titer of 1:160.

It's been difficult trying to find out more on the condition as I'm sure you know. My health has improved substantially post-surgery.

My only worry is that it is just the beginning of more serious things to come (eg. lupus). My rheumatologist here in Singapore has been good with the diagnosis. It'd be great if you could share your experience?

I really hope you're feeling better. Being at uni alone is tough enough let alone being sick. Hope to hear from you soon.

Desiree

[priyanka373]

My son almost 8 yrs old had Kikuchi for 7 weeks and had to have a biopsy to find out the about Kikuchi. He had it from Oct -Nov 2010 and now  all of a sudden today 2nd Feb, he is down with fever again. I will give it couple of days and take him to the doctor.

I thought i was done with it...its is so unnerving

I live in the US and my email is

***@****  email me if anybody knows more about it.

[dawnddw]

I was diagnosed with Kikuchi Disease 2 weeks ago and I chose to have the lymph node tumors removed. The were actually 3 sections that were removed. I don't know what other symptoms or problems anyone else has had but with everything I read up on the disease I am finding that a lot of my other symptoms that I have had for some time and currently sound to be lupus. Fatige, whole body tenderness, muscle pain, sleep issues, depression, hands and fingers hurt all the time, even a few of my other joints as well. Can anyone say yeah or nah about this? I want to get a follow up with my PCP to check by I don't want to come across as looking for something either.

[stephdeb]

I was diagnosed with this several years ago after a biopsy. Hearing some of your stories I think I got off quite lightly I was not given any treatment just told that I was extremely lucky as my surgeon though it was lymphoma.  Since then I've had no follow up at all from my surgeon or my GP.  However, since I had the lymphectomy I've suffered from throat infections (about 8 a year). I don't know if this is connected or not.  

[jk319]

Hi there, my wife also has the KFD.  At the time of biopsy, we also found out that she had esophogus infection which caused her to feel nauseous and eating difficult.  If you have not, I suggest that consult a doctor that specializes in the area and that you take endoscopy to examine your throat and esophogus.  Hope you are well.

[jk319]

Hi there, my wife also has the KFD.  At the time of biopsy, we also found out that she had esophogus infection which caused her to feel nauseous and eating difficult.  If you have not already, then I suggest that you consult a doctor that specializes in the area and that you take endoscopy to examine your throat and esophogus.  Hope you are well.

[saigirl]

hello i found out today after a biopsy was removed that i have kikuchi diease and omg wth is this diease and no one know about it even if its rare,i am going for a second diagnosis i dont belive i have kikuchi diease. can anyone have any more info please email me ***@****

[Braintoobig]

Hi everyone. I went to see an infectious disease specialist and she tossed around this diagnosis but said she wanted to rule other things out first.
This is the first time I have ever heard of kikuchi. Is there any help for this or do we just have to live with it? I'm so tired all the time and my lymph nodes are crazy!
I don't just have one lymph node swollen. My lymph nodes cycle around my body. One day it's in my neck, then underarm, then groin, and they just switch places all the time. I've been sick for 9 months now and nobody can figure out what's wrong with me.
Funny enough though they have found many other things wrong with me including a tumor on my pancreas!
I just want to feel better  :(  I went from being an athlete to wanting to sleep all the time.

[CaNoNe31]

I was diagnosed with kikuchi fujimoto disease when I was 20, it's a rare disease and mostly targeted those in their 20s. Well, during that year my blood count's not good because of it..my wbc was not normal, every now and then I had fever, fatigue always got me, muscle pain, but what irritated me the most was the pain in my neck. So I had this lymph node that really painful. My father had a leukemia that time so I went to his hematologist, the doctor worked on my case and referred me to a surgeon. So the surgeon told me that I need a surgery to take that thing off of my right neck. Surgery done. Biopsy was done. The result at first was dire, the first opinion was cancer, my surgeon and my father;s hematologist wanted a 2nd opinion so they had it done...the final opinion resulted a disease named kikuchi fujimoto. So the hematologist gave me some guidelines and advice: take a lot of rest, no night-owling, drink lots water, eat healthy foods no soda and junks, avoid polluted and untidy places ('cause it's auto-immune so my system's not that strong), no smoking (i really dont smoke lol), avoid alcohol. after a month I went back to the hematologist for my monthly check up and she still found out that I had small lymph nodes in my neck, so she gave me this medicine named PREDNISONE..and a CENTRUM vitamin. after months of it, I'm okay.  But  now, I'm kinda afraid cos it's like it's coming back, 4 days ago I felt pain in my neck, then 2 days ago I felt a swelling in my right neck again, right above my surgery..and I wanna go back to the doctor to check if it's coming back again..I just wanna live a healthy life especially now that my father's gone because of leukemia, and I'm trying to live healthily with my mom, hubby and our 3mos old baby. just dont wanna worry about this again... So you guys with the same case, see a doctor or maybe a hematologist and a surgeon. (from Philippines)

-CaNoNe31

[CaNoNe31]

By the way, that was 3 yrs ago. I'm 23 now and it's like kikuchi disease is coming back again. i hope my swelling gets better and cured. God bless us all.

[usfemale]

Thanks everyone for posting - there is so little information on this condition, it's really helpful to hear of others' experiences. My experience with kikuchi started several months ago with fatigue, fever and swelling in the neck.  Within a few weeks, it progressed to extreme exhaustion (had to lie down most of the day), high fever (104/105 when not controlled by tylenol) and several lumps in the neck.  Blood work showed abnormalities.  Initial working diagnosis was lymphoma after fine needle aspiration and partial results of  needle biopsy, then switched to kikuchi after full results came in.  Period of extreme exhaustion and fever lasted about 6 weeks but fatigue and more mild fever lingered another month. Had a minor relapse about two months later, but symptoms (tired but still able to work, 100 fever, enlarged nodes but fewer in number) only lasted a few weeks.  Was told only real treatment was prednisone but did not take this and symptoms resolved.  Am almost completely back to normal now- just with less energy levels than before.   Everyone - please keep sharing any information you have on this condition, it really does seem to be a mystery!  Also, I would be curious as to what peoples' stress levels were prior to the onset of the kikuchi.  Thanks and good luck to all.  

[Quells]

I am amazed I finally found other who have been dealing with this disease. I was diagnosed around June 2009 but have been having problems since January 2009. Considering its said to be self limiting its even more rare to still be dealing with symptoms 2 years later. Most recently I was hospitalized for an extremely low white blood cell count and was placed in isolation for about a week. After my stay in the hospital I found out that a low WBC is yet another newly added symptom of KFD which is very very scary. The hosptail told me my count was so low it could have easily been fatal. I am now 26 and this disease has completely ruined my life due to the severe case I have. its nice to finally know I'm not alone :)

[Quells]

After reading all of the posts i decided to add more detail to mine....when i started getting sick in 09 I had been seen by several different docs and got no where, was even accused of making myself sick and being anorexic, put on antidepressants etc.....due to vomiting i lost about 20lbs in 3 months and was fading away to nothing. In April 09 I developed a very large lump where the neck and shoulder meet on the left side. it grew so large you could see it even when I had a shirt covering it. I was finally able to get it removed in July 09 and the biopsy results first came back as lymphoma and I was hospitalized, by this time I was down to 98lbs (by the way I experienced pretty bad nerve damage from the biopsy and have permanent issues on the left side with neck shoulder and arm)...while in the hospital, 2 things happened; 1 after a CT scan it was discovered I had a mass in my chest and the 2nd is that my oncologist said it was KFD instead. I was seen by about 6 different types of docs and everyone was confused. I was treated with Prednisone for about 6 months. During the 6 months I had to have thorasic surgery to remove this unknown mass and after the first couple months the fever, vomiting, enlarged lymph nodes came back. Since Prednisone is not nearly a good medication to be on I was switched to Plaquenil which my mom takes for her Lupus for inflammation. Of course Lupus has always been in the back of my mind but my test results are showing I have it. I stopped taking the medication on my own because I wasnt seeing a change. Ive been in and out of the emergency more times then I can count and average about 30-40 doc appointments a year so far because my symptoms become so severe at times. The biggest scare was in April of this year when my lymph nodes were even larger than usual (because they always come and go throughout the week/month). They seemed to stay large, along with fever, I decided to take a trip to the ER to check my blood work. When they came back with results the doc was in gloves, mask, suit saying I was to be classified as neutropenic and could not leave the hospital. They were surprised I wasnt sicker and if I would have been around anyone sick it could have easily been fatal...after that stay I was able to track down info that says the low WBC is a symptom of this condition so I kind of feel like im a ticking time bomb walking around...how will I know when I am at risk? answer: I WONT KNOW...I have been dealing with symptoms for 2 YEARS CONSISTENTLY...i guess I missed the whole 6 month thing..I have been out of work for almost a year due to the symptoms and nerve damage as a result of the biopsy...its really a mess and I am no closer to finding out how to manage KFD....

[gem483]

I just got diagnosed a month ago with a cervical lymph node biopsy.  I've been dealing with fevers, night sweats, and enlarged lymph nodes in groin, arm pits, and cervical, and also hand/wrist discomfort.  I did have a groin lymph node biopsy 2 years ago (not tested for Kikuchi) and it was benign.  I see a specialist later this month.  It's crazy how rare this disease is!  When I spoke with the doctor on the phone, he didn't really make it seem like a big deal?  Wondering if other issues could be underlying since I may have had this for 2 years or more.

[Quells]

i think that for MOST people it isnt a big deal..but for a few here and there they have worse symptoms...My doctors have always though I may have some other underlying issue but havent been able to figure it out yet...I have pretty much had every symptom that you can have...even the serious skin issues, which i forgot to mention in my post...Im not currently on any medication for it because it didnt seem like anything was really working...currently I have vomiting once every week to two weeks randomly for no reason, skin issues as well as the enlarged lymph nodes here and there....since you have fever and night sweats I would say to make sure you stay current on blood work...The last time I have bad fever my white blood cell count was so low I had to be hospitalized in isolation so that I would not become fatally ill...it is a very weird and frustrating disease...what kind of specialist are you seeing? I was being treated by rehumatology and oncology most recently....

[ebird33]

so much kikuchi interest lately! i wish we could set up a more open forum where talking was easier. this isnt the best framework for easy chatting or for sharing info... any ideas how we could do this??

[walkerkw88]

I was diagnosed with KFD in January of 2011.  The only symptom that I presented with at that time was a large lump near my armpit.  I had many ultrasounds done on this lump and was told by radiologists that it was a swollen lymph node and it should go away in a few weeks.  After 4 months of no change in the lymph node I elected to have it surgically removed.  I was diagnosed with an aggressive form of cancer (high grade neoplasm) and was directed to have a CAT SCAN performed to find the primary site of this cancer.  To make a long and painful story very short, after weeks of testing, I was told that I was mis-diagnosed and that I truly had KiKuchi Fujimoto Disease.  Thilled that I was spared from Cancer and all the treatments that my oncologist had lined out for me, now I find myself searching for others who have this rare disease.  After reading case studies, I can see that my onset of symptoms probably started months prior to finding the lump/swollen lymph node.  I had a low grade fevers, fatigue, and a very high stress level.  I would be very interested to find out if stress has anything to do with the onset of KFD.  I have found that when I'm under alot of stress many of my symptoms seem to come back...ie, fever and fatigue.  Could be coincidental but curious nonetheless to see if anybody else has experienced the same.  I was treated with steroids and quite honestly I don't think it was necessary for my symptoms.  My pain is very mild but my seems to be the test for me! I live in UTAH and haven't found anyone else with my disease....so this site is a God send.  Thanks for all your comments and advice!

[gem483]

Has anyone been pregnant with Kikuchi disease????????
I have have Kikuchi disease and have been consulting with my doctors (primary and OB) about trying for our second child.  Our first child is 3.5 and my symptoms started a couple months after she was born so I don't believe that I had Kikuchi while being pregnant with her but who knows.
My OB doctor is concerned that I'll have Lupus- like symptoms/risks while pregnant. He is not familiar with Kikuchi disease so he is planning on treating it like I have or could develop Lupus.  He said that he would consider me a more "high risk" pregnancy if I get pregnant.  He had me do a baselike kindey screening. My blood work was normal, however, my 24 hour urine was very high for protein.  He said that i'd have to do a monthly 24 hour urine if I get pregnant to monitor my kidney closely.  He also said that he may have me take a baby Aspirin daily to prevent miscarriage.  I think that we are going to go ahead and try to get pregnant (we want a second child and my docs said that If we are going to have another that we should do it now anyway becasue the disease may progress).  Just wondering if anyone experienced this?  It's a little scary when none of the doctors around here know much about Kikuchi disease.

Also, have any of you found a doctor who really knows about Kikuchi disease? Most of mine have had to look it up to learn about it.  THey are also concerned that I have had the same symptoms for over 3 years (enlarged lymph nodes in numerous locations, fevers, fatigue, joint pain)

[ebird33]

i havent spoken to anyone thats been pregnant while being sick with kikuchi. nor am i yet to meet a doctor that knows a lot about it. unfortunatly im not sure what to suggest... other than just monitor your health closely, listen to your intuitions and do what seems best. you know your body so just listen to it and im sure it will all work out okay. good luck.