View Full Version : Lymph Node biopsy reveals lupus lymphadenitis

01-15-2009, 12:50 PM
Hi. I am Cathy. I was just given a working diagnosis of SLE last Tuesday. Since then I have been doing some research and letting it sink in. I have, as many of you as I've read, had many symptoms dating far back into my life. I am a 31 year old mother of 3 kids under the age of 7.

I have been very ill since September of 07. Nobody has taken me seriously until I revisitied my old ENT Doc. I starting having a lot of pain in my neck, and noticed swollen lymph nodes. This is in addition to severe brain fog, confusion, anxiety, bone pain, joint pain, dry eyes, shooting pains in head, migraine headaches, back pain, foot pain, burning poking stabs all over, numbness and tingling of left arm and hand, in addition to a rapidly increasing blood pressure and abnormal pulse rate.

I have had 4 surgeries since Oct 08. Removal of left tube and ovary for endometriosis, esophagoscopy for throat pain and swelling, cardiac catheterization with ablation for abnormal heart rhythm, and finally excision of two lymph nodes on the right side of my neck, with a resultant pathology of necrotizing histiocytic lymphadenitis, or lupus lymphadenitis. So, finally, my family and docs know I am not a hypochondriac, and I know that my water in my house isn't poisoning me (a thought I'd pondered). (Mayo clinic pathologist confirmed this dx) (also have a positive ANA for 4 years, speckled and homogeneous 1:180)

I wonder if any of you have had a lupus diagnosis based on lupus associated lymphadenitis. I have never heard of it before and was very scared bcuz I thought that it mean my disease was very progressed.

In short, my new rheumy just started me on plaquenil 200 mg 2x daily and wants me to do lyrica 150 mg a day, then double to 300 a day. I haven't started the lyrica, and just started the plaquenil. I feel really dizzy and yukky. My heart feels like it races at times too, but I don't know if that is in my head or what. My BP was normal. I took it. I am just very nervous about taking any meds. They scare me.

Any info would be great. I am soooo scared. I don't know anyone with Lupus. My sister is being worked up for it too, but her symptoms have somehwat disappeared lately.

Thanks for your time and info. Cathy

01-15-2009, 09:00 PM
Lymphadenitis is not uncommon with Lupus or with mixed connective tissue disease. It is usually seen when the disease is active and is a frequent sign in systemic lupus erythematosus (SLE). Enlarged lymph nodes are a common symptom in several auto-immune disorders, such as sarcoidosis, systemic lupus erythematosus, & rheumatoid arthritis.
In spite of the fact that LAP usually carries no risk to the patient, SLE patients with LAP usually have higher disease activity levels than SLE patients without LAP. Besides the disease itself, other causes of LAP such as infections, immunological or malignant diseases must be considered when making a differential diagnosis.
Some people exhibit almost constant symptoms of lymphadenitis, which do not resolve, despite treatment. This can be especially true of people with compromised immune systems, such as people with Lupus. People with Lupus are more likely to experience chronic lymphadenitis.
LAP is also the prominent clinical feature of Kikuchi-Fujimoto's disease, which is associated with fever, arthralgia, and leukopenia. These are also symptoms commonly found in SLE.
Since the prognosis and treatment of Kikuchi-Fujimoto's Disease and SLE are different, it is that your doctors differentiate these two diseases.
However, the increased risk of lymphoproliferative diseases (several conditions in which lymphocytes are produced in excessive quantities. They typically occur in patients who have compromised immune systems -In these diseases, cells of the lymphatic system grow excessively. Lymphoproliferative disorders are often treated like cancer) are increased in patients with Lupus. Since there is a considerable overlap between the symptoms of Lupus and the symptoms of lymphoma, it is often difficult to diagnose lymphoma in lupus patients.
What you are describing is not uncommon for Lupus patients, or patients with compromised immune systems. So, you are not alone. While it does indicate that your Lupus is active, it does not necessarily mean that your disease is critical.
Plaquenil is one of the drugs used for lupus that is very well tolerated by most patients. You should not fear its use. You can read through some of the posts here where the drug is described, as well as its side-effects. Lyrica (aka: pregabalin) is used for treating pain, particularly for neuropathic pain and/or seizures. Lyrica is an anti-epileptic drug, also called an anticonvulsant. It works by slowing down impulses in the brain that cause seizures. Lyrica also affects chemicals in the brain that send pain signals across the nervous system, and so it works for generalized pain also.
You may have thoughts about suicide while taking Lyrica. Your doctor will need to check you at regular visits. Do not miss any scheduled appointments. Call your doctor at once if you have any new or worsening symptoms such as: mood or behavior changes, depression, anxiety, or if you feel agitated, hostile, restless, hyperactive (mentally or physically), or have thoughts about suicide or hurting yourself.

I hope that this information has been helpful to you. Please let us know if you need anything further :lol:

Peace and Blessings

01-16-2009, 06:54 AM
Hi Saysusie - Thanks for the reply.

It is my understanding, based on the pathology report and letter from the Mayo clinic, that in fact a malignancy was ruled out. However, they did say the findings were consistent with Kikucki's lymphadenitis, however, they also found hematoxylin bodies and the Azzopardi phenomenon, which is more commonly seen in Lupus associated lymphadenitis, and because all my symptoms are autoimmune related, they gave me a working diagnosis of SLE.

Have you ever heard of anyone having undue lactation because of lupus. I have been leaking small amounts of milk for about 4 months. I have had 2 mammograms, an ultrasound and a ductogram, and cancer has been ruled out. Just don't know why its happening.

Lastly, I am having an enormous amount of anxiety and shortness of breath/weakness on this plaquenil. Is that okay? I don't want to just give up, because I heard it could get worse before it gets better. Any info? I did a search, but I am not finding much relative to these things. I did find one girl who quit taking it because of anxiety.

Thanks for your help, I truly appreciate it. :)

01-16-2009, 05:18 PM
Hi! I just wanted to let you know that I have been on Lyrica for over a year. I take two at 6 in the evening because it can make me sleepy. I have tolerated it and have had no problems. I would not worry about it to much because your doctors will keep a very close eye on you :wink: