Anybody had problems with parotid (saliva) glands?

[tangocharlie]

My saliva glands (in the cheek near the ear at the base of the jawbone) seem to be swollen and sore. I was first treated for parotitis but it didn't go away even after several lots of antibiotics. Also have swelling in lymph at base of neck which comes and goes. Been checked out with an MRI scan and there are no lumps but my GP is stumped and wondering if this is a side effect of steroids or allergic reaction to them? I was on Pred for years and am now on hydrocortisone and it came on as I was reducing from 5 to 4 pred but has got worse since I've switched. That could of course be total coincidence. Anyone else experienced this? There is an autoimmune disease called Sjögren's syndrome but they don't think it's that.

[Celtic PMRGCAuk volunteer]

tangocharlie, Whilst on steroids and following a throat infection, I had almost an identical experience with swollen salivary glands that refused to return to normal for many months. Full head dental X-ray was carried out plus scan and at one stage lymphoma was queried plus Shogren's. I arranged a private appointment with my wonderful Rheumy (follow-ups had ended) and he suspected a condition linked to Shogren's called Mickulitz's Syndrome which could resolve on its on in time. Some 7 months after its arrival it disappeared. Hopefully you will have a similar experience! Good luck!

[tangocharlie in reply to Celtic]

That's amazing, thanks Celtic, will mention that to my GP. Must admit even though the MRI showed no lumps am slightly worried as was the GP who sent me on the quick 2 week referral because my neck and throat keep swelling up. I do have some saliva though which is why they don't think it's Sjogren's. I wonder if you have one automimmune thing (PMR) you're more prone to others, like the link to GCA?

[PMRpro Ambassador in reply to tangocharlie]

Yes - once you have one autoimmune disorder you are more likely to develop another than someone with no autoimmune history. Sad but true...

[Mrsd12f in reply to tangocharlie]

Hi tangocharlie,

Just to say that I have Sjögren's and I do have saliva and just have a dry mouth, at night. I don't have any pain, though. The Sjögren's was discovered when they first did the bloods, when diagnosing my PMR.

[tangocharlie in reply to Mrsd12f]

I wonder what the blood test is, from what I've read there doesn't seem to be a specific test, just swollen glands, dry eyes and mouth, lymph swellings, fatigue. My ESR is higher than normal, usually around 38 but currently 48. I know that's nothing to you guys with GCA, yours is probably in the 100s. It seems to come and go, last night I felt there was something constricting my throat and choking me, though I could breathe OK.

[Mrsd12f in reply to tangocharlie]

Hello again! The tests show ANA (Anti-Nuclear Antibody), common in various rheumatism-related conditions, apparently.

As far as the dry mouth at night goes, I use Xylimelts tablets, as the disgusting gunk they prescribe on the NHS made me feel sick. The tablets adhere to your gums (all gone by morning - the tablets, not the gums!) and secrete moisture over a couple of hours. I get mine from mouthulcers.co.uk. Hope this helps.

[tangocharlie in reply to Mrsd12f]

Thanks for the info about mouth tablets. My ANA came back negative last month but I thought that it was looking for lupus and Addisons. I haven't been diagnosed yet but from what everybody is saying and what I've read this does look like a Sjogrens or Mikulicz type thing to me. Now how do I suggest it to the GP who says it can't be because I have some saliva? I do have incredibly dry sore eyes, feels like I've rubbed salt in them. I'm using celluvisc eye drops for that as I get dry eyes anyway due to an eye condition.

[PMRpro Ambassador in reply to tangocharlie]

Does it not occur to her that everything comes in various levels of severity?

Sjogren's produces specific antibodies I think but they don't always appear in the blood. A biopsy is the real confirmation.

If you go over to the LupusUK forum there are several people there who know far better than I do about the ins and outs of Sjogren's.

[Celtic PMRGCAuk volunteer in reply to tangocharlie]

I can so understand your worry, tangocharlie - I remember how frightened I felt when Lymphoma was put into the frame.

Don't be too surprised if your GP seems unaware of Mickulitz's! My GP said he would have to look it up, adding that he seemed to remember hearing of it somewhere in the distant past!

I didn't have too much of a problem with saliva during the day but it was most difficult to deal with during the night as I would wake up with my tongue stuck to the roof of my mouth. At the time, I did contact the Sjogren's Society helpline and a certain chewing gum was recommended but I'm sorry I'm unable to remember which one. You might be able to get some advice from them - their telephone number is 0121 478 1133.

Yes, unfortunately, when we suffer with one autoimmune condition it is quite possible to succumb to another - unfair though it is. However, let's hope it turns out to be something simple that can be treated or that it will resolve of its own accord as it did for me.

[tangocharlie in reply to Celtic]

Thanks Celtic. Interestingly I pointed my symptoms out to my rheumy, the lovely Dr Mackie but at the time parotitis had just been diagnosed and she was trying to sort out my cortisol levels and possible adrenal insufficiency, so we didn't discuss it. Im seeing my GP next week, and he's the one that diagnosed the PMR in the first place so I'll see what he says. It is very frightening,my face throat and neck are all swollen, but you kind people have helped calm me down that there is probably a logical explanation for all this. Thank you

[christine2715]

I have GCA and have similar symptoms, painful neck, glands seem up and painful from ear down neck. Sore swellings in my mouth and under tongue. Dont know what the cause is.

[tangocharlie in reply to christine2715]

Sounds like what I've got. Having ruled other things out docs think it is something autoimmune eg Sjogrens. Interestingly it's rare in the wider world yet on here several people have experienced it. How long have you had it christine2715?

[PMRpro Ambassador in reply to tangocharlie]

That's because we all already have at least one autoimmune problem. We are a select population...

[christine2715 in reply to tangocharlie]

About 6 months I think or more

[weathervane]

Hi , i have sjogrens and have had problems with parotid glands . I looked like i had mumps initially and was very sore , went to dentist who said it was infected. I had more problems and was eventually seen by dental surgeon who scanned the glands and found the left was quite damaged. He massaged the gland to help it drain and showed me how to massage it- i now do this every day . I was eventually seen by rheumy who diagnosed sjogrens. If you continue to have problems it may be worth seeing a dental surgeon as i find when the salivary gland swells its uncomfortable and can get infected. Best wishes, hope you get help 😀

[tangocharlie in reply to weathervane]

My dentist has had a good look but it's the glands up behind the ears that you can't see and the swelling in the neck and cheeks that are giving me pain rather than the mouth ones. I had a bit of Cushingoid moon-face going on anyway from the steroids for PMR but now I really look like a hamster.

[Tonylynn]

My wife has been diagnosed as having GCA and she had pain in her parotid glands. Given that the gland is supplied by a couple of branches of the external carotid, and it is the external carotid that is the most common site for giant cells, it is hardly surprising that there can be parotid pain. Are you getting any problems chewing you food? Claudication of the chewing muscles is also because these muscles are supplied by branches of the external carotid. Any headaches?

[PMRpro Ambassador in reply to Tonylynn]

I'm interested in your citation that " it is the external carotid that is the most common site for giant cells". It isn't something I have ever seen quoted and this:

"GCA typically affects the superficial temporal arteries—hence the term temporal arteritis. In addition, GCA most commonly affects the ophthalmic, occipital, vertebral, posterior ciliary, and proximal vertebral arteries. It has also been shown to involve medium- and large-sized vessels, including the aorta and the carotid, subclavian, and iliac arteries."

suggests there are other places more likely to be affected.

[Tonylynn in reply to PMRpro]

Apologies for that ... what I should have written is that the arteritis of Giant Cell Arteritis can occur in the external carotid and any of its branches. GCA is commonly called temporal Arteritis and that is because it is the most common manifestation but pain in the occipital area, scalp, muscles of mastication, tongue, parotid etc are all associated with branches of the external carotid artery.

[tangocharlie in reply to Tonylynn]

Yes headaches, particularly at the back base of the skull and behind hte ears. And difficult to chew dry stuff. So far no sign of GCA but I am alert and watch out for pain in the temple around the eye. Has your wife got PMR to or just hte GCA?

[PMRpro Ambassador in reply to tangocharlie]

GCA headache is only around the temple - the headache can be anywhere, and occipital (at the back) is not unusual.

By difficult to chew dry stuff do you mean your jaw gets tired/painful?

[tangocharlie in reply to PMRpro]

I meant as I have PMR and now maybe Sjogrens too often things come in 3s so watching in case of any signs of GCA too. My jaw doesn't get painful really, just the mouth getting dry with certain foods eg piece of chicken, nuts, cheese, Adcal tablets!

[PMRpro Ambassador in reply to tangocharlie]

I thought that was what you meant.

[Tonylynn in reply to tangocharlie]

My wife's problems started with intense pain at the back of her head (occipital area). She had a raised CRP and ESR and some pain in the calf muscles. The initial diagnosis was PMR and she was put on 20mg Prednisalone. It was only three months later (having reduced the steroids to 10mg) that she experienced pain from the jaw muscles making it difficult to finish a meal which required a lot of chewing and the arteries in her temple started to become prominent. A diagnosis of GCA was then made and she was put on 60mg which has slowly reduced since. I put it to her GP (who took advice and is totally blameless) that in the three months she could have gone blind and his response was "Yes she could". So do not wait for further sypmtoms. In theory an ultrasound examination of the occipital artery could indicate the presence of GCA but I doubt there is anyone trained in your area to do this. Ask your GP "Are you sure this isn't Giant Cell Arteritis?" because if it is you need a high dose of steroids now. Quite a few people seem to be unaware that the occipital artery can be involved.

[tangocharlie in reply to Tonylynn]

My GP is aware of the possiblity of going on to get GCA as I have PMR, but I don't have any pain anywhere near the temples. Thanks for the reminder of the dangers and I will continue to be alert for any changes. I've got an appointment next week and I'll ask about Sjogrens etc.

[Tonylynn in reply to tangocharlie]

You do not have to have pain in the temple area for it to be GCA. If you get any visual disturbances go straight to EYE CASUALTY. Make sure now that you know where it is.

[tangocharlie in reply to Tonylynn]

Thanks very much for your advice I'm monitoring it and will act pronto if anything changes.

[PMRpro Ambassador in reply to Tonylynn]

"In theory an ultrasound examination of the occipital artery could indicate the presence of GCA"

Far beyond theory - the TABUL study has already shown that u/s of the temporal and axillary arteries (not the occipital artery) is as reliable as doing a TAB.

acrabstracts.org/abstract/a...

Any of the people trained for the TABUL study can probably offer it. It is routinely offered at Southend and Leeds and there are likely to be other hospitals. Unfortunately, due to the parlous state of the NHS currently, it hasn't been possible for the 6 month training period to be completed for the u/s technologists who would usually carry out such studies in the UK.

[tangocharlie]

Well the pain in the back and side of my head got worse so I went to A&E but it was a false alarm, they checked me out including looking at the optic nerve and ESR blood test and pronounced nothing wrong. Took some strong painkillers and it's been fine since. Better to be safe than sorry though so thanks for the advice.