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.
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.
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 ... 🦋
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.
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.
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!!
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.
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
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.
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.
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.
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.)
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.
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