Swollen lymph nodes: I have had swollen lymph nodes... - LUPUS UK

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Swollen lymph nodes

Salaam123 profile image
12 Replies

I have had swollen lymph nodes in my neck for nearly 2 years. I got diagnosed with lupus a couple of months ago. I noticed that this can be a symptom of lupus. The swelling comes and goes, I tend to feel very lethargic with it. Has anyone had experienced this?

12 Replies
happytulip profile image
happytulip

Yes, mine were so big that I had an ultrasound scan incase it was lymphoma. My glands have gone down since starting medication for lupus. Namely HCQ.

Salaam123 profile image
Salaam123 in reply to happytulip

That’s good to know, glad to hear that

Jmiller623 profile image
Jmiller623

Yes. There are tons of recent posts that discuss this. My glands have been enlarged on and off for over 10 yrs. I was just recently diagnosed with lupus a little over 2 years ago. They are still big, wax and wane. Nothing really makes them go away unless I take high dose steroids. Had 2 PET scans looking for lymphoma. Both negative. All lupus. It’s one of my most persistent symptoms. I am forever fatigued. One of my most debilitating symptoms. Nothing really relieves it for me, even optimal self care.

Salaam123 profile image
Salaam123 in reply to Jmiller623

I’m sorry to hear that, sending you good wishes take care

Pmeh profile image
Pmeh

Hi salaam yes I have this if I'm unwell it swells I'm actually having a scan on it next week to make sure it's a lymph node

Salaam123 profile image
Salaam123 in reply to Pmeh

I hope the scan goes well for you

lufibabe profile image
lufibabe

Hi

Are these the nodes in your neck..just under the jaws?

I keep getting them..so like 2 golf balls..and it comes and goes. Didn't know its related to lupus..(not had lupus diagnosis but have many symptoms)

Salaam123 profile image
Salaam123 in reply to lufibabe

Yes same with me.

Chanpreet_Walia profile image
Chanpreet_WaliaPartner

Hi Salaam123,

Yes, lymphadenopathy, the swelling of lymph nodes can be a symptom of lupus. Anywhere from 40% to 50% of SLE patients will have swollen lymph nodes often noticeable in the neck, armpits and groin.

In some people, the lymph nodes swell during flares of their lupus, but sometimes they can remain slightly swollen even when the lupus appears to be well controlled. The swelling can also be due to an infection.

We published a blog article on managing fatigue which you may find helpful to read at lupusuk.org.uk/managing-fat...

Best wishes,

Chanpreet

Salaam123 profile image
Salaam123 in reply to Chanpreet_Walia

Thank you, this is very useful information

Olderkitten profile image
Olderkitten

Hi Salaam123 I have the same problem with swelling on both sides of my neck and no one has an answer. I had a CT scan Friday and Dr said if I don't hear back from her then nothing showed up so if that happens I'll talk to rheumatologist this Friday and see what she thinks or I'll go to endocrinologist...I don't know what else I can do but it would be nice if someone could help me as well as knowing what it is and why it happens. Good luck and I hope you get answers and help.

Salaam123 profile image
Salaam123 in reply to Olderkitten

That’s frustrating. I had a scan and they said that it seems reactive in nature - probably due to an infection or the inflammation. I just have to wait and see what else they suggest. I think the rheumatologist will know more. Good luck to you too

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