Sjogren's syndrone maybe !

[Chrissy1953]

Found a swelling above my jaw in front of my right ear today. Tender but not painful.

I have had very dry mouth for a long time now and dry eyes.

Dry mouth I put down to Amitriptyline and dry eyes Prednisilone for which Dr prescribed eye drops.

I googled symptoms and have come up with Sjogren's.

At the moment I am chewing gum which I do a lot now, and have a warm cloth on my face and it seems to be going down.

It seems if I'm reading correctly that PMR and Sjogren's can appear together.

Off to the Dr's I suppose. Of course after a battle for an appointment. Watch this space

[PMRpro Ambassador]

The bottom line is that ANY two (or more) autoimmune disorders can turn up in cahoots.

And there is a report in the literature of Sjogren's presenting as RS3PE - which can be seen in some patients in PMR:

ncbi.nlm.nih.gov/pubmed/129...

Just to complicate things even more!

[Chrissy1953 in reply to PMRpro]

Thanks PMRpro.

I have no swelling anywhere else so hopefully if it is Sjorgen's it's mild. (i assume you can get it mildly) Had results of all my blood work this week and all good. ESR which when diagnosed was 37 is now 8. I'm on 9m reducing slowly to 8.5 mg Pred.

Funnily though today I really ached in my muscles. So missed my usual Aqua class and had an easy day.

[PMRpro Ambassador in reply to Chrissy1953]

Watch it then - this could be your body telling you to hang on a bit at 9mg!!

[SheffieldJane]

Oh I hope not Chrissie, good luck. I must say I have thought the same thing before now having experienced dry eyes ( pre-dates PMR) and a very dry mouth, some nights. I also take 10 mgs of Amitriptylin an hour before bed to aid sleep, not sure I need it anymore.

The lump certainly needs medical opinion, and priority for an appointment. " I have found a lump". Should do it.

[Hidden in reply to SheffieldJane]

Hi Jane! If I don’t take my amitriptyline I don’t sleep. I take 50 mgs each night. I have stopped it a few times but always go back. I might drop down to 25 mgs once I get down on prednisone ... 🦋

[PMRpro Ambassador in reply to Hidden]

Old thread Lin ...

[Hidden in reply to PMRpro]

Oops, it is a cloudy brain thing hehehe

[Judigardener]

Hello, I almost certainly have Sjogrens and the dry eyes drive me mad at times. However, I find that wiping with Blephasol first thing in the morning and putting in Carbomer based eye drops/liquid keeps most of my eye problems at bay. I find that being in the car, or AC buildings, or windy weather, can make matters worse. As others have said, it is quite possible to have more than one auto immune condition at a time.

[oiseau222]

I had a similar situation and had xrays and biopsy. Everything was inclusive, non of my drugs affected it, but it eventually went away...took almost a year. One doctor told me to suck on lemon drop candies (the citric acid stimulates saliva and helps drive the tumor out). I saw a rheumatologist, oral surgeon, ENT and pathologist (who did the biopsy). I got used to having it there and it did finally disappear. Good luck and keep us posted.

[oiseau222]

That should read "inconclusive." Sorry.

[Rugger in reply to oiseau222]

You can edit a post to correct an error by clicking on the down arrow below your reply, making the changes and then re-submitting it.

[Chrissy1953]

Good news is Dr says it the Parotid gland and seems to be blocked by a salivary stone. Antibiotics given, but only if swelling doesn't go.

Was imagining all sorts..... Happy I don't have to deal with anything else.☺

[Jo_Lyn in reply to Chrissy1953]

Hi Chrissy ... I have had countless blocked parotid glands over the past 15'ish years. I found that I could gently massage the area and actually feel the blockage pass and the swelling to go down. Heat on the area helped a bit too. I hope this is your first and last blocked gland!!

JoLyn

[Chrissy1953 in reply to Jo_Lyn]

Thanks JoLyn. Now I know what it is any helpful tips welcome. Hope it's a one off. Was quite tender.

Chrissy

[Jo_Lyn in reply to Chrissy1953]

I remembered something ... while I was having the blocked glands I was also hypercalcemic due to primary hyperparathyroidism. I do not know if that was the cause of the blocked glands but kidney stones are a symptom of it. My logic is if PHPT can cause kidney stones could they also cause little stones that block the parotid glands? Maybe. So ... make sure and check your calcium levels and if they are even a tiny bit high find out why.

Best Wishes,

JoLyn

[Chrissy1953 in reply to Jo_Lyn]

Thanks JoLyn. I have stage 3 kidney disease so my Dr keeps a good eye on that. I have just had blood results and they are all good including thyroid and calcium levels . Hopefully it was a singular episode but I'll know how to deal with it now. Chrissy

[Jo_Lyn in reply to Chrissy1953]

I'm really glad to hear that your doctor is proactive regarding calcium. So many doctors don't understand HPHT, just like PMR. I hope it is a singular episode as well! I didn't much care for chipmunk cheek!

Prayers and best wishes to you. I'm sorry you have kidney disease to deal with, as well as PMR.

JoLyn

[Whitner]

I’ve found that Biotene spray (I can keep in my purse) and Biotene mouth wash along with sugarless gum helps. I just started coconut water, no sugar added, and for some reason that helps dry mouth too. Of course eye drops for eyes during the day. I must have a little easier (?) problem since I can still wear my contacts for a number of hours a day.

[PMRpro Ambassador in reply to Whitner]

Did you notice this thread is 2 years old?

[Whitner in reply to PMRpro]

Oh no! Thanks for pointing that out. Did offer some good information though. I’m wondering if I have a clogged parotid gland. I’m trying the lemon water and massage.

[PMRpro Ambassador in reply to Whitner]

Oh joy - if it isn't one thing it is another isn't it!

[Whitner in reply to PMRpro]

Urggh, yes!

[KellyInTexas in reply to PMRpro]

Oops... I just now noticed this- after seeing your above response. Sorry.

[KellyInTexas]

Dr Elizabeth Price in Swindon is the UK’s leading expert on Sjögren’s syndrome. You can google her and find a you tube video on her talking about it, actually.

There is also , “ sicca” syndrome which is a precursor to Sjögren’s syndrome. ( usually in a little younger women before they reach the age for full Sjögren’s syndrome to be usually seen.)

Also, sero negative ( not showing positive antibodies in the blood) to Sjögren’s syndrome is not terribly uncommon. In this instance you can get a diagnosis based on diagnostic criteria rather than classification criteria. Simply put, your well trained Rheumatoligist sees all the Clinical signs, but your specific to Sjögren’s blood work is negative, which can certainly happen. It doesn’t mean you haven’t got it, and s/ he’s going to diagnose you anyway because you fulfill other criteria and start you on a treatment plan to help you feel better and protect you.

LDN ( Low Dose Naltrexone) has been shown to be effective with Sjögren’s syndrome in many patients. Many Rheumatoligists are reluctant to treat with it because it is unclear on exactly what specific diseases it targets. I’m not at all sure how that would work with PMR / GCA , but the general idea is LDN is effective as an add on with many different auto immune diseases. I believe it is a modulator of some kind.

Dr Chris Steele of the UK a few years ago headed a Campaign to promote LDN to be prescribed due to its cost effectiveness and benefits. You can give that a google as well- I’m not sure how that landed, as I’m not a UK citizen. I think it was not passed, as many of my colleagues diagnosed with Sjögren’s do self fund , but have relief from symptoms.

( I have Sjögren’s syndrome also. I was first diagnosed with sicca syndrome in my mid 30’s- then full Sjögren’s in mid 40’s.)

[PMRpro Ambassador in reply to KellyInTexas]

I didn't know LDN was useful in Sjoegrens..

[KellyInTexas in reply to PMRpro]

It has been with the cohert we work with- but Im unclear if there are large peer reviewed international studies.

There is a Rheumatoligist in Dallas that released a paper recently. He’s using it . My admin colleague on the Hughes forum ( also has lupus, APS, and Sjögren’s- as it’s the trifecta for us- sent me the paper. She lives in Devon, actually. ( I’m the only American Admin, but My Texas physicians sent to to the London lupus Centre, so I’m seen by a variety of specialists including a few within The UCLH system.)

If you’d like I’ll try to pull up my email from her. I did call Dallas and speak with this doctors nurse. She asked him if he would see any contraindications with warfarin ( my fellow Amin is on fragmin) and he said to ask my Hematologist- but he did have a APS patients in it as an add on therapy/ adjunct.

I’m having a horrific week. My sister suddenly passed away Sunday in the early hours- PE’s in her sleep. Some auto immune involvement and some heart issues- but completely out of the blue.

I’ll be fully available after the middle of November. ( I’ve taken a leave of absence from every thing.) I’m hit or miss right now still trying to serve where I can- only where I can be of actual use.

And still be family number one.

[PMRpro Ambassador in reply to KellyInTexas]

No worries - I'm so sorry, you come first, not my question. But I know and I know where to ask in futures. Big virtual hugs xxxx

[Hidden in reply to KellyInTexas]

So sorry to hear about your sister. Take care 💜

[Whitner in reply to KellyInTexas]

Kelly, thanks for the information, I’ll check it out. So very sorry to hear of your sister’s passing. Take care of yourself!