Hello Everyone! Quick background:
Diagnosed w/ lupus in 2006 & chronic
kidney disease due to lupus
(stage 3)in 2009. Recently had a
bout w/ pneumonia which I get a lot.
Also had sore throat & thought it was
Strep… It was instead swollen &
infected lymph nodes. They have remained
swollen. Also my white & red blood cell
count have gotten very low… They were
always low & questionable this time they are
both low. I’m seeing a hematologist
this wk to look into the lymph node issue
and the blood count issue. I hadn’t
seen a hematologist since I was first
diagnosed. Any body out there have issues with
lymph node infections, white blood cell issues
etc. Any advice or experience on this
area??
Yes I have both. . Had a lumpectomy of a lymph node in my neck last year, the pathology came back as unspecified inflammation. I’ve been living with what feels like strep on the left side of my throat for a couple of years but it’s just the constant swelling of my nodes , trachea and larynx. My monocytes have always been abnormally low but my total WBC count is always higher than it should be on cytoxin chemo therapy. My Dr said its because im in a constant state of flare.
I had an infected lymph node in my arm last yr and it was biopsied - benign. Was having a lot of low grade fevers at the time. My ortho doc said it was weird but then so is Lupus! Ha ha also the ER doc thought it was tennis elbow- WTF!? Sometimes I think the ER docs are useless!! I have seen a hematologist for extreme low iron. Anemia. His theory was I was bleeding internally somewhere. I did not buy that
Either bc I think if I was I would eventually been too weak to do anything or there would have been evidence of it coming out somewhere. I know sometimes I have to get irons infusions and have had a transfusion but think it is lupus related and another " who knows" kind of thing! It’s a crazy one, this disease!
Oh boy yes!!! So sorry to hear you tell my story!! Lymph Nodes always swelled at start of a flare, but started a study (already was and still am on Methotrexate and Cellcept- and of coarse plaqunil- but the nodes became an issue, as myI had my left armpit biopsied and came back Lupus thank God, as she thought it was lymphoma… but they are all over & getting worse- groin, belly, chest, neck, armpits… And getting bigger… My body (bones) took a huge hit with YRARS of high doses of prednisone so I’m only on a tiny dose…3mgs (compared to 6mgs)- Dr. Who had me on a study for lupus took me off because of the constant swelling of lymph nodes and blood count- sending me to John’s Hopkins. Have been in a constant flare since 2012- CNS Lupus as well as kidney involvement- always a low grade fever, WBC always low as well compliment C3 & C4.
The othe issue is the severe weightloss - completely unintentional- (family was hoping I had an eating disorder!- but 4 days of neuro psych testing came out that it was Lupus CNS-… Funny you said Tennis Elbow- I’m pretty sure you can get swollen nodes there too! If not, swollen joint! I never realized that the chest pain I was getting (different than myocarditis that I have had-) was due to the sternum being a joint!
Bizarre disease and the doctors truly don’t know how to help it!!!
Need to get a bone marrow test, but can’t gain the weight due to the lymph nodes- working with a nutritionist and drinking lots of juices that are Antiinflaitory.
Do you have weightloss as well? Mine is embarrassing- you can actually see the nodes in groin-
You are in my thoughts and prayers-
Pls keep me updated and I will do the same- xo
PS - just got back from an amazing conference that was all on health and spirituality- (put on by Louise Hay - called “I CAN do it!” I met an amazing woman who has a author- Kris Carr- had liver cancer and nothing worked- amazing and vibrant woman! Gave me a cook book and a 21 day cleanse- KALE- KALE and more KALE! Was given 10 yrs to live and she is now healthy and 11 yrs later vibrant and “beautiful vessel”! Check out Hayhouse.com for some very inspiring thoughts just to get away from the worry for a bit- if nothing else! XO
Nameste- Hopeful
I too have a low rbc and wbc. My red blood cells are always enlarged. And I have the swollen sore lymph nodes when I’m in a flareup. My left under arm node is very sore today. I had a virus last week of some sort and now my lupus wants to flare. If I pick up anything, I almost always go into a flare a week later. Also, I too deal with the low grade fevers. The fever will begin around 10:00 am and will run all day until around 7:00 pm. It is quite odd.