PMR and dry mouth?

[Whitner]

I am very new to this forum and a diagnosis of PMR. I’m a 66 year old woman and have always been very active. Been on 20 mg prednisone for 1 week and now on 15 mg with minimal symptoms but I had the shoulder, arm, hip pain (bursitis) and thigh tightness before prednisone. I’m wondering if anyone else also has problems with dry eyes and dry mouth and if it’s related to PMR. I had this problem on and off before going on prednisone. Thanks for your responses.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome

You might find this link of interest -

lupusuk.org.uk/dry-eyes-and...

Sjögren’s syndrome (which is another autoimmune illness like PMR and Lupus) can also cause these problems - and in fortunately if you have one A/I - very often another likes to keep it company.

On your PMR, you need to stay at 15mg at least for a lot longer than the initial week at 20mg.

Recommended to stay 3-4 weeks at starting dose - and we sometimes suggest 6 weeks - that’s to make sure all the existing build up of inflammation is cleared properly before you start reducing.

The Pred only addresses the inflammation caused by the PMR , not the PMR itself - and that inflammation is produced every day - so you need to make sure it is properly controlled. You want to make you are aren’t trying to get rid of the inflammation already in your system and control the new batch at the same time on too low a dose of Pred.

Have a look at this -

healthunlocked.com/pmrgcauk...

[Whitner in reply to DorsetLady]

Thank you DorsetLady, this is very helpful!!

[PMRpro Ambassador]

Dry eyes (and other dry bits) were a problem for me long before pred so it can't be blamed. But sicca (dry) syndrome is not uncommon in autoimmune disorders - that is just Sjögrens without blood antibodies to be found.

[Rosbud in reply to PMRpro]

Thank you for the info about sicca , I have been tested for Sjorgrens and told I'm ok but have exactly the same symptoms as my close friend who has Sjorgrens, it was her who suggested Iwent to GP for testing as she's convoI have Sjorgrens x

[Whitner in reply to PMRpro]

So is there anything that can be done for the symptoms? I am fortunate that they aren't too much of a problem and they come and go. I make sure I drink water constantly and haven't been wearing my contacts much. thank you for the information about sicca.

[Hidden in reply to Whitner]

Do you use toothpaste that is sodium lauryl sulfate-free? It's A foaming agent that dries your mouth and can make it sore. I found that really helped but I get tortoise mouth if I use toothpaste with sls in. No mouth washes with alcohol. At one point I used a spray from the chemist's that moistened my mouth. And when possible I chewed sugar free gum.

I used vials of preservative free eye drops. You can use any I suppose but I like the individual ones from the pharmacy as you used them once so each vial was sterile. I presume they did a biopsy to test for SS?

P. S. Do you have to drink lots of water? Just wondering about your blood sugar. The dr should have checked hba1c on a full blood panel.

[PMRpro Ambassador in reply to Whitner]

Depends what they are. You can get artificial tears, there are liposomal sprays for eyes. There are lozenges for a dry mouth:

"XyliMelts are oral-adhering discs that stick to your teeth or gums to relieve persistent dry mouth. Use XyliMelts during the day or while sleeping and find temporary relief from frequent thirst, sticky dryness in the mouth and throat, and other unpleasant dry mouth symptoms."

I suppose a pharmacist could advise. But just google "dry mouth remedies" to get lots of suggestions.

[Whitner in reply to PMRpro]

Thank you pmrpro. I am thankful my symptoms aren’t to difficult to manage with water, biotene and eye drops.

[Arflane97G]

This site is very useful but so is cultivating a good relationship with your GP. after a very shaky start I now have a lovely GP who I can discuss pmr / tapering/ complimentary therapies with. I email the practice with any concerns and she gets back to pretty quickly so do not have to battle receptionist for appointments. Am only on my second reduction and all ok so far but early days I know.

[SheffieldJane]

Yes I do. I have been prescribed preservative free dry eye drops, a dry mouth spray and dry mouth lozenges. This seems to help. I did wonder about Sjorgren’s syndrome?

[Whitner in reply to SheffieldJane]

Thanks SheffieldJane. I do have a mouth rinse that helps Biotene and spray.

[Daffodilia]

I have dry eyes - optician says caused by PMR - I use drops eye drops, eye wash and heated eye mask which helps

[Whitner in reply to Daffodilia]

Ok I’ll have to try the heated eye mask. Thank you.

[sondya]

Dry mouth and eyes . . . my rheumatologist is now considering these are connected to Sjögren’s syndrome rather than PMR. He prescribed Hylo-Fresh eye drops which are preservative free.

[Whitner in reply to sondya]

I’ll check into this. Thank you.