Desperate for support

[Staywildmoonchild]

Good morning,

I recently was diagnosed with Rheumatoid Arthritis and im awaiting to see the consultant about Sjogrens symptoms.

I suffer from dry mouth, eyes and fascial sweating which i believe is connected to the parotid. My face amd neck swell near my ears and i HATE it.

Im currently undiagnosed

Im so embatrassed to add this photo but i would be grateful to know if this swelling, currently a non painful lump may have something to do with Sjogrens? Any help gratefully recieved.

Mandy, UK

[Accam1953]

Hi

I was diagnosed with SS in 2014 when I developed similar swelling of parotids as well glands in neck like yours. My rheum and my oncologist ( I Also have CLL) decided on treatment with Rituximab and Chlorambucil which successfully reduced swellings. However they returned a couple of years later when I was put on a clinical trial for Venetoclax, new generation CLL drug, which is producing a better long term outcome.🙂

Accam1953, Australia

[Staywildmoonchild in reply to Accam1953]

Awwww bless you for taking the time to reply, thank you 🤗

My self confidence is plumeting at the moment. Yes im overweight but these swellings arent fat. When i go out, obviously not at the moment, im so conscious of my face and neck swellings 😔 Every photo im in seems to capture it. I hate it! 😢 I feel reassured by your reply and can only hope once this horrid covid is over that i will get some treatment to reduce it. You have given me hope and whilst i know my case could be completely different to yours, im still comforted to know that hope is there for me☺️

Stay safe down there. Its a crazy time but hopefully the world will heal very soon.

I wish you all the luck in the world with all your future treatments 🙏 🍀

Mandy

[weathervane in reply to Staywildmoonchild]

Hi there , sorry you are still suffering with these symptoms ☹️. Have you tried applying heat and facial massage? Is it possible for you to email a photo of this to your rheumy, it might be of help and they might refer you for a parotid scan .

Look after yourself and take care

Happy Easter 🐣

[SusieW2]

Could be lymph nodes or glands. Glad its not painful. Mine, up closer to my ear/jaw, seem to get blocked and hard. I get pain when chewing and need to gently palpate it until it drains. Make sure it's not a tumor though. Hang in there!

[Megansheart in reply to SusieW2]

I know it might be a bit different in the UK as you have so many COVID patients, however our doctors in Australia are doing public service announcements telling people not to put off going to their GP for new or evolving issues, for whatever reason. They say it is important to follow up on things. They do not want us to wait ‘til this pandemic is over.

Is the swelling on one side/unilateral or both/bilateral?

I think the suggestion that WeatherVane makes re sending an email to your Rheumatologist is a good idea too.

[SusieW2 in reply to Megansheart]

It can be either side. My Rheumatologist approves of light massaging of the area which works. No tumors.

And we only have large numbers of COVID in some areas. In MN it is minimal. We are told we can see our Drs. but should call first to see if we can have a virtual meeting or need to go in to clinic.

[Staywildmoonchild]

Thank you everyone for taking the time to reply, it really does help me feel less alone.

I do get the swelling higher up infront of my ear but nothing as dramatic as this. I have a swelling on the other side to so im confident its not a tumor. However the swelling is definitely worse on the right.

I do massage my face.....particularly in front of my ears for that swelling which does seem to help but i dont think this lump reduces with touch.

My self confidence and esteem has plumetted because of this 😔

I will try and email the rheumatologist the photo and see what he says.

Thank you once again everyone 🙏

💚Stay healthy, stay safe💚