Kikuchi disease

Posted by jamiekk @jamiekk, Dec 9, 2017

Has anyone been diagnosed with this disease? My 30 year old son has been but there is so little information on it and the Drs he has seen it’s the first time they have heard of it. He had it in his neck in February 2017 it was removed and he got better. Now he has a softball size lymph node in his abdomen that the Drs think might be kikuchi disease again. They are doing a biopsy next week but the problem is they aren’t sure if they will be able to get enough to tell. Surgery to remove is risky because it is behind all of his organs. I’m a very worried frustrated mother! If anyone has info that might be helpful to us PLEASE reply! Thanks so much

Interested in more discussions like this? Go to the Autoimmune Diseases group.

@colleenyoung

Hi @jay723, Jenn, welcome to Mayo Clinic Connect. It can be so frustrating to have a rare disease that many doctors are not familiar with. I'm sure @twood412 @jamiekk @gretchenv15 and @dloft know exactly what you mean and have had similar experiences when advocating for care for themselves or their child. I also think @becsbuddy can relate to having an unresolved autoimmune condition and the fatigue and on going effort it requires to get relief.

There have been a few case reports of systemic lupus erythematosus (SLE or lupus) developing several years after recovery from Kikuchi disease. Did the lupus testing prove to be positive for lupus? Jenn have you seen a doctor who specialized in Kikuchi disease?

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Hi Colleen, thank you for the response. I haven’t been tested for lupus in a while but they have told me me I am negative for Lupus. I cannot find anyone who specializes in it. I have tried to see a rheumatologist but I am told they don’t deal with Kikuchi and almost every doctor I have ever talked to about Kikuchi just looks at me like I’m crazy or don’t give me any resources to go to.

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@jay723

Hello my name is Jenn, back in 2008 I had several swollen lymph nodes in my neck which all the doctors thought was lymphoma, I was sent to and ENT dr where they removed a large lymph node from my neck to biopsy. It was KIKUCHI. The doctors told me my swollen lymph nodes and flu like symptoms would resolve on their own. After a few months they did subside. Over the years I have had sever medical issues and the symptoms are treated as individual issues, however friends and family had directed me to this chat because I they think my medical issues all stem from Kikuchi. I have fibromyalgia symptoms, breathing issues, several ovarian cysts and have had to have surgery to remove, the breathing issues are getting worse, I have been tested for lupus ugh I’m a mess oh and recently I had a lump removed from one of my thighs I have a couple others on my body but this was getting bigger and would itch all the time anyway it was removed and determined that it was related to my Kikuchi. Every time I mention Kikuchi the doctors just look at me funny and shrug because they don’t know what it is or don’t know enough about it to even discuss it. I just finally want some answers as to what is going on instead of telling me I just have all these medical issues that are half a** treated. I’m miserable and I’m fatigued and tired all time and cranky from pain and feeling like this will never be resolved. I’m not sure if anyone else had or is experiencing any of these health issues but if you have or know anyone who would would be able to help me figure this out. Thank you

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@hopeful33250 Sending prayers your way

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@gretchenv15

My 15 year old daughter was diagnosed February 2nd 2018. She started having problems first part of October 2017 and was hospitalized for 4 days with a “blocked salivary gland” and cellulitis. From that point forward she started having enlarged lymph nodes in her neck then multiple in her armpit on the opposite side. Her WBC count bounced a lot from normal to 3.4 same with her hemoglobin. She was seen in 2 different ER’s many times. All saying something was wrong but they didn’t know what… and then sent her home. Beginning of January she started running temps of 103-104.2 several days in a row then break then start again 2-3 days later. Early January she was diagnosed with viral encephalitis. High temps, severe headaches and the temps continued. From the beginning of January to end of January symptoms continued to get worse. January 22nd we rushed her to ER. She was screaming in pain, 104.2 temp, she had rigors and was shaking so hard. Her fever broke there and once again the sent her home. The next day her primary physician, wonderful Dr!, saw her. WNC count was 2.4 hemoglobin was 8.1, she was a grayish translucent color, she was struggling to even walk. Dr was concerned that with the significant drop on her blood counts she may have leukemia. He ran a bunch of tests. By Wednesday she was looking worse. Her Dr had us drive to St Mary’s hospital in Rochester. After a few days she stablized but the lumps in her armpit were getting larger and more painful. The Dr in Rochester somehow came across Kikuchi. She had about every symptom to the Nth degree!! A biopsy was done see if she had Kikuchi, lymphoma or something else. They remove the 2 largest lymph nodes and the biopsy came back it was Kikuchi without a doubt. Since the her fevers haven’t went over 102 and rarely has a fever, body aches lessened blood counts were going up. She had enlarged lymph nodes in her, more CT scans, luckily they appear to be Kikuchi. She went on minocycline (acne medication- I had read that it was tried in a patient.) within 5 days everything cleared up and she was finally feeling better but once the medication was stopped slowly symptoms started coming back. She continues to have problems with body aches, headaches, fatigue, loss of appetite and a few enlarged lymph nodes that were not big. Right before Christmas she had a lump under her chin. CT was done immediately… again appears to be nothin to worry about but her WBC count had dropped to 2.2 with no explaination. A couple weeks later is was 2.4 or 2,6, a couple more weeks it was 3.2. She has little to no energy. She has not had even 1 normal WBC count since early October 2017.

Her Dr is not sure that it is still Kikuchi because in every “study” or report… which there are not very many, it says 1-4 months, sometimes 6 months and rarely a year. This poor girl now 16 has missed 16 months of her life, a whole year of school.

I am not sure what to do! Every time we think things are over… some symptom(s) pop up and she is down 3-5 days and slow going for another 3-5 days. Just 1 week ago she was home from school 2 1/2 days and still feeling the effects of whatever is going on. She cries regularly because she is scared it will get really bad again and she just die understand why she just can’t feel “normal”.

Is there a chance that she STILL has Kikuchi 16 months later?? Do we need to start looking for something else to be wrong?

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Hi, my child also has Kikuchi and it breaks my heart to read this about your daughter. I would love to know how she is doing now!

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Hi @twin1095 and welcome to Mayo Clinic Connect. It must be so hard to see your child have to deal with this. What is your child's experience with Kikuchi? What symptoms does s/he experience with a flare up? Does the swelling and inflammation clear up after a few weeks?

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@jay723

Hi Colleen, thank you for the response. I haven’t been tested for lupus in a while but they have told me me I am negative for Lupus. I cannot find anyone who specializes in it. I have tried to see a rheumatologist but I am told they don’t deal with Kikuchi and almost every doctor I have ever talked to about Kikuchi just looks at me like I’m crazy or don’t give me any resources to go to.

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@jay723, here are some resources from reputable institutions that I found:

NIH https://rarediseases.info.nih.gov/diseases/6834/kikuchi-disease
NORD https://rarediseases.org/rare-diseases/kikuchis-disease/
Orphanet https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=50918
https://www.ncbi.nlm.nih.gov/books/NBK430830/
You're not crazy. It takes patience and persistence to find a doctor who specializes in rare diseases. Is a second opinion at Mayo Clinic an option for you? Or a major university health center?

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@twin1095

Hi, my child also has Kikuchi and it breaks my heart to read this about your daughter. I would love to know how she is doing now!

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It took her almost 2 years before her symptoms were gone. Then she got mono. Her freshman and sophomore years she pretty much did homebound and a tutor from the school came 2 days per week. Her junior year she got mono the end of October and became very run down and was out of school until after Christmas. Then came CoVid and they sent her home right away due to health concerns and then all of the schools closed a short time after. This year… she is a senior. She is doing distant learning due to our concerns of "what if" she gets sick. Will it cause Kikuchi to become active again? She still has periods where she gets rundown, gets a little achy and has headaches. Where it is related to kikuchi who knows. We just hope it won't return and/or she doesn't develop lupus. We've been told her chances are a little higher because I have lupus and I just pray she doesn't get. She's had a long road and has struggled with friends because she missed soo much school and was too sick to do anything. Now we worry because she's supposed to start college next year but because of missing so much "teaching" on a daily basis her grades suffered. But I am happy to say she is a happy girl, kind, big hearted and such a good kid! She does however worry about getting sick, every time she has any symptoms of a cold she gets anxiety. Hopefully that will fade as time goes in.

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When my daughter was diagnosed with Kikuchi at the Mayo Clinic we were told there was nothing that could be done but ibuprofen and time. We were then told to follow up with her primary physician for any further issues. Her primary had never heard of Kikuchi but he read up on everything he could, he talked to the Dr at the Mayo and he treated himself. He did amazing with her and no matter how busy he was he would fit her in if she had a problem with himself or the PA in his clinic because at least he could oversee what she was doing and because 1. He cared and 2. Urgent, ER, etc. would just tell us we needed to make an appointment with him and send her home.

We laugh now at how He is an expert now. He knew nothing about but didn't give up.

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@colleenyoung

@jay723, here are some resources from reputable institutions that I found:

NIH https://rarediseases.info.nih.gov/diseases/6834/kikuchi-disease
NORD https://rarediseases.org/rare-diseases/kikuchis-disease/
Orphanet https://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=50918
https://www.ncbi.nlm.nih.gov/books/NBK430830/
You're not crazy. It takes patience and persistence to find a doctor who specializes in rare diseases. Is a second opinion at Mayo Clinic an option for you? Or a major university health center?

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I have been trying to get in to see a rheumatologist, but I have Kaiser as my insurance and Kaiser rheumatologists do not see people for fibromyalgia or KFD, I have called several out of network Dr’s and no one can help me. I’m not sure what to do at this point. I live in Colorado Springs and there aren’t any good resources here I’m just at my wits end.

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@jay723

I have been trying to get in to see a rheumatologist, but I have Kaiser as my insurance and Kaiser rheumatologists do not see people for fibromyalgia or KFD, I have called several out of network Dr’s and no one can help me. I’m not sure what to do at this point. I live in Colorado Springs and there aren’t any good resources here I’m just at my wits end.

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Plain and simple
GET OUT OF KAISER.
HAVE FRIENDS AND NEIGHBORS WHO WERE WITH KAISER, AND LEFT THEM TO FIND ANSWERS TO THEIR HEALTH ISSUES.
LUCKY FOR THEM, THEY GOT THE HELP THEY NEEDED ONCE OUT OF KAISER.
GOOD HEALTH INSURANCE SHOULD BE AT THE TOP OF EVERYONES LIST.
IM NOT A BELIEVER OF “MANAGED HEALTH CARE’.
HOPE YOU FIND A GOOD DOCTOR.

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I was diagnosed with Kikuchi July 2018. I had my lymph nodes on my neck swell up. They did a biopsy and told me about kikuchi. I had bad fevers, night sweats and my arms were weak. I had it for three weeks and I was discharged with ibuprofen. Three years later which started July 4/21. I am back with body aches, rash & sore joints. I’ve seen about 8 doctors including a rheumatologist since and they hardly know about kikuchi. I’ve done so much bloodwork and tests for all types of diseases even lupus, Lyme disease, you name it they tested it. It would be great to find someone who knows more about the disease. Since the diagnosis, I’ve had more health problems. Before that, I was perfectly fine. I have more tests coming up but this is hectic and tiring. Please send me more information about kikuchi.

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