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

Hello Jamie (@jamiekk), welcome to Mayo Connect. I’m glad you found us. I can understand the worry and frustration of not knowing when there is not a lot of information available. I’m hoping we can get some helpful suggestions for you. I am tagging several members who have discussed Kikuchi disease to see if they can offer some suggestions. @bvanlaan, @twood412, @kelseydm, @kanaazpereira can you provide any information or suggestions for @jamiekk ?

Jamie, @kelseydm has a post here with a good suggestion:
https://connect.mayoclinic.org/comment/28830/bookmark/?ajax_hook=action&_wpnonce=d65d6508d4
If possible, can you keep us updated on any progress?

Thank you for being a strong advocate for your son. I think you have found the right place to search for answers.

John

REPLY

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

REPLY
@twood412

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

Jump to this post

I’d be happy to. The single most important thing I can mention is that almost 4 years after my KFD diagnosis, I was diagnosed with late stage neuroborelliosis (chronic Lyme and co’s) which my doctors believe to be the cause of my KFD flare 5 years ago.

REPLY
@twood412

Hi Jamie. I was diagnosed with KFD about 5 years ago. I’d love to chat with you.

Jump to this post

Hi @twood412,

First, thank you so much for answering John's tag – I'm certain @jamiekk appreciates it too, and we are thrilled to see you return to Connect!

@jamiekk, although these two studies were published in 2006 and 2011 respectively, I thought you might wish to read them:
– Successful treatment of severe Kikuchi's disease with intravenous immunoglobulin:
https://academic.oup.com/rheumatology/article/45/2/235/2899313
– Management of Kikuchi-Fujimoto Disease Using Glucocorticoid:
https://www.hindawi.com/journals/crim/2011/230840/
Jamie, you mentioned, "…the Drs he has seen it’s the first time they have heard of it." Have you thought about seeking a second opinion?

REPLY

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?

REPLY

Hello @gretchenv15, welcome to Mayo Clinic Connect. You mentioned that her doctor is not sure it is still Kikuchi. Is it the same doctor in Rochester that diagnosed your daughter? If not, it might be a good idea to contact the doctor and ask them what the next step is for a treatment plan. @bvanlaan, @twood412, @kanaazpereira might be able to offer some insight or suggestions to help.

Hope you find some answers soon.

REPLY
@johnbishop

Hello @gretchenv15, welcome to Mayo Clinic Connect. You mentioned that her doctor is not sure it is still Kikuchi. Is it the same doctor in Rochester that diagnosed your daughter? If not, it might be a good idea to contact the doctor and ask them what the next step is for a treatment plan. @bvanlaan, @twood412, @kanaazpereira might be able to offer some insight or suggestions to help.

Hope you find some answers soon.

Jump to this post

Thank you!! After her surgery January 2018 the aft at Rochester said her primary Dr could follow her. Her primary is great with her and has done a lot of research but doesn’t have any clear answer. I will call the Dr she had at the Mayo and see what he wants us to do. I will reach out to the people mentioned in your reply.

REPLY

Hello @gretchenv15

I am so sorry to hear of your daughter's continued problems with this disorder. I can understand your concern and I appreciate your reaching out to seek answers! I am glad to hear that you will be following up with the doctor in Rochester who originally diagnosed your daughter. This sounds like a very good plan.

While I'm sure you know a lot about Kikuchi Disease already, I did a little research and found some information on a rare diseases website. You probably already know most of the information, but thought it might be of interest to you. Just click on the link to read the article,
https://rarediseases.info.nih.gov/diseases/6834/kikuchi-disease
I look forward to hearing from you again. Will you post again and let me know how you are doing as you seek for answers?

REPLY
@hopeful33250

Hello @gretchenv15

I am so sorry to hear of your daughter's continued problems with this disorder. I can understand your concern and I appreciate your reaching out to seek answers! I am glad to hear that you will be following up with the doctor in Rochester who originally diagnosed your daughter. This sounds like a very good plan.

While I'm sure you know a lot about Kikuchi Disease already, I did a little research and found some information on a rare diseases website. You probably already know most of the information, but thought it might be of interest to you. Just click on the link to read the article,
https://rarediseases.info.nih.gov/diseases/6834/kikuchi-disease
I look forward to hearing from you again. Will you post again and let me know how you are doing as you seek for answers?

Jump to this post

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

REPLY
@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

Jump to this post

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?

REPLY
@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?

Jump to this post

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.

REPLY
@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

Jump to this post

@hopeful33250 Sending prayers your way

REPLY
@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?

Jump to this post

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!

REPLY

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?

REPLY
@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.

Jump to this post

@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?

REPLY
Please login or register to post a reply.