Do i contact the Rheumatologist to discuss?

[Staywildmoonchild]

Hi. I have many nasty symptoms. Ive just been diagnosed with Rheumatoid Arthritis. The consultant was very quick to diagnose and hush me out of the door as he was running behind in clinic.

Im upset and annoyed that i didnt get to discuss my concerns over possible sjogren's. Maybe you guys could suggest anything.

I have a dry mouth....hardly any saliva. I suffer a lot in the night, in particular. I cant swallow because its so dry which makes me panick. It feels as if im choking.

I also sweat, my face trickles with sweat at times.....usually after ive eaten. Summer is HELL.

My glands around my neck close to my ears swell up too. Tge GP said it was my parotid glands. My friends often remark "oh its a bad day today then" when they see my puffy face and swollen neck.

Ive recently developed this bloomin cough. I cough up clear to white sticky phlegm, again particularly at night but it is throughout the day too.

Are any of these symptoms compatible with Sjogren's?

Any help gratefully received. Thanks for reading. Have a great day one and all 😊

[Tally]

Sadly Rheumatogy Specialists here in National Capital are the same. I wish you relief.

[Accam1953]

Hi

I was dx with Sjögrens some years ago. Also positive for RA. As I also have CLL, my Onc and Rheum decided they might kill 2 birds with Rituximab, a leukaemia infusion. Quite successful for a couple of years with much reduced swelling. Now on trial Leukaemia drug ,Ventoclax which is far more effective. Been on Plaqenil for many years for Sjögrens. Also use Xylimelt lozenges for overnight mouth dryness. My Rheum thinks some of these new Leukaemia drugs may have uses in treating Sjögrens 🤞

[weathervane]

Hi there, before I got a diagnosis of Sjögrens my parotid gland used to swell up on left side and i looked like a hamster , a scan show that damage was evident, i now massage my face most days to prevent build up . I also had enlarged lymph nodes and felt very ill , following blood tests , biopsies and scan i got my diagnosis. I was eventually started on rituximab a number of years ago with great success.

I would contact your rheumy nurse or rheumy and tell her about these symptoms. I hope you get some answers, you could also ask for a second opinion if you are unhappy 🌸🌸

[Staywildmoonchild in reply to weathervane]

Thank you so much for replying 😊

I have a Rheumy appointment for 3 months to start RA treatment. He doesnt wamt to start it now as he referred me to the Neuro for my other symptoms. So waiting for that 1st.

May i ask what you Sjogren's symptoms were/are please? I understand if u would prefer not to.

I think i might email and say about it. He was soooooo rushed 😬

Blue skies, Mandy

[weathervane]

Hi Mandy , things came to a head with me a number of years ago . I had severe joint and muscle pain , fatigue brain fog and flu like symptoms, I wasn’t able to function. I developed parotid and lymph nodes enlargement, I couldn’t put arms down by my side . I had scans and lymph node biopsy and was referred to rheumatology. I had the dryness problems but that was nothing compared to the other problems.

My rheumy was excellent, i was started on hydroxy initially with minimal improvement so was then advised to begin rituximab infusions. These took 9 months to really kick in properly, and i a new woman now !!!

Thinking back i was showing symptoms for years but it never picked up.

I still have problems with inflammation and joint swelling, also raynauds issues in feet . My white cell count is a very low at times , even before I started treatment so have to work at avoiding infection .

I hope this is of help to you ! If there is anything you want to ask about feel free to ask. The Lupus web site is also excellent for advice.

Best wishes and take care xx

[weathervane]

sjogrens.org/files/brochure...

This is helpful for parotid swelling. Xx

[Staywildmoonchild]

Goodness, so your joint pain etc is Sjogren's not Rheumatoid Arthritis? Im ill informed.....I thought it was quite a mild disorder affecting mainly the parotid and saliva. I think i need to do more reading on this. Im delighted to hear that you feel a new woman on the latest meds, that offers such hope to many of us im sure.

Oh wow, what a great little article.....thank you so much!

Many thanks again