How I am coping with PMR and dry mouth/eye

[saffron52]

Hi All

I have been tapering down from 20mg to 12.5 m.g Pred from February 2018 with little help from my GP who insisted I came down by 5mg each time and refused point blank to give me 2.5mg or 1mg Pred. As I have gastric coated I could not split them. Went to another GP who grudgingly gave in and gave me 2.5mg so I could do it myself. Have telephone appt with original GP in September but it looks like I am going to have a fight on my hands, so tired I just cannot be doing with it!

On the brighter side I found after moaning and moaning I eventually got an inflatable hot tub this summer it was a good price. What a revelation it has helped my pains tremendously and helped with all my movement, I do my yoga moves in the water (obviously not downward dog etc) and improved the stiffness in my legs - RESULT.

Also have been suffering from dry mouth/eye syndrome for a couple of years and found some tablets which work for the dry mouth. The doctors gave me spray which did not help at all and after some digging on web I found The Mouth Ulcer Shop in Southampton who are the best price for Xylimelts tablets. I used to wake up every morning and could hardly swallow water it was painful to drink anything and could not even take my tablets without 30 mins of sipping just water so I could swallow. These tablets really work and you can get them in plain flavour or Mild Mint (I like the mild mint) and they are good for your teeth as well, 1)Stimulates saliva 2) Coats moisturises and lubricates 3) Reduces tooth decay 4)Reduces plaque. I checked with my dentist who is had never heard of them and he said they were fine and a very good idea. Apparently they have been giving children in Sweden sweets at lunchtime no sugar I presume with Xylitol in to see if they protect their teeth and initial findings have been excellent. I have been using them for a year now RESULT.

Hope this might be of some interest and help, I cannot say how much I appreciate this site, I felt very alone when first diagnosed and it cheers me up every day with all the advice and humour that is given. Cheers to you all. Take care Angie XXXX

[SheffieldJane]

Thank you for sharing your solutions with us. I have the dry eyes and mouth too. It feels like Sjögren’s plus PMR.

I wish you had a less intransigent doctor - he wants to try it for an hour. I wish you could see someone wiser. Your hot tub sounds genius! This is how to manage this disease - dealing with each small battle as it arises until finally we win the war.

[Rosbud in reply to SheffieldJane]

Thanks for sharing this about the dry eyes and mouth , I'm coping with this , GP did blood tests but all came back normal so no Sjorgrens, so told to drink small sips of water frequently but no other help from GP , sometimes feel like tearing my hair out but his helpful site keeps me going X

[saffron52 in reply to Rosbud]

Aw been there got the T shirt on ripping my hair out, thats if I have any left after losing loads down the plug hole after each shower. I am determined to do it my way thats why I circumvented her and went to another GP for 2.5mg uncoated so will just cut them in half and nearly the 1 mg I wanted all along. Take care Angie xxxx

[SheffieldJane in reply to Rosbud]

I have bought the XYlitol 17% gel and it works! Huge doses would give you the runs but you only need a pea sized blob. Thanks saffron!

[saffron52 in reply to SheffieldJane]

You are so right SheffiedJane, I was surprised how well the hot tub worked on the PMR pain. It is wonderful for about 2 hours then starts again, but, pop in the tub twice a day now so getting there. The dry mouth tabs have been wonderful and at the moment there seems to be no downside to them. Thanks for replying. Take Angie xxxx

[PMRCanada]

Thanks do much for sharing Angie! I have dry mouth as well and will try to locate the tablets here in Canada.

Our hot tub is a vital part of my healing from PMR, an old 2004 Coleman model that is big enough to hold me AND the band lol.

Unfortunately the jets of hot water do not help with the chronic knee injuries that require cold compress and likely surgery of some sort.

I too expect a fight on my hands at my next visit with my Rheumy next month as she is insisting I follow a “textbook taper” and would only give me 5mg tablets. They were uncoated so I bought a pill cutter and am doing it my way. Tried her way at the beginning and had a flare, back up to 15 for 5 weeks. Now at 13.75 second week.

Hold strong. We should not have to fight with our medical professionals. If they refuse to work with you, on to the next.

[SheffieldJane in reply to PMRCanada]

I got the Xylitol gel on-line, from the U.K. Mouth Ulcer site. Amazon had similar, though dearer.

[saffron52 in reply to PMRCanada]

Hi PMR Canada I love my hot tub just bought a small one off a well known auction site and it is brilliant. I am pain free for about 2 hours after 20 mins on full bubbles, it is so relaxing and refreshing turned the heating slightly down during our hot summer here in the UK.

I will keep going with GP but when you are tired and just want someone to say hey you are doing so well, instead they just moan and ask me IF I WANT TO STOP ON STEROIDS ALL MY LIFE I did not want them in the first place but in order to live any sort of life at all I have to take them. Take care Angie xxxxxx

[Mstiles]

Hi saffron,

Glad you found relief with the xlimelts, I use them too and the work great. My dentist also gave the OK. There is gum too with xylitol but it seems few store stock it.

I also found that krill oil capsules help with dry eye.

[saffron52]

Hi All

Thanks so much for your lovely comments, it is so great to have people who understand what you are going through. My GP is just stuck like a record on you can only have 1mg of Pred if you get below 10mg what the hell is that all about duh! I take Omega 3 for my dry eye and find it has worked thank goodness.

Take care all of you Love and hugs Angie xxxx

[suzy1959]

Mstiles, that is interesting about the Krill oil and eyes as I am taking Krill oil and haven't had as many problems with dry eyes recently. Didn't know about that association1

[karools16]

Thanks so much for the tip on xylimelts tabs. I will see if I can take them with my other tabs. I have had dry mouth for some time now, and know exactly what you mean by not being able to swallow early morning.

[saffron52]

Hi Karools

I think they will be fine with whatever tablets you take as you DO NOT SWALLOW THEM so they are a topical treatment so should be no interaction. At night before I go to sleep I brush my teeth really clean and then apply the tablets which are concave, one side has a special glue on and you stick them to the upper gums one tablet on either side. They stay there quite happily till next morning where they have dissolved. They stimulate the production of saliva overnight which is always the worst time with dry mouth, and I wake to a fresh lubricated mouth (I use mild mint). I have shopped for them on e-bay but they are more expensive than The Mouth Ulcer Shop in Southampton I order 3 x packs of 40 tablets which last 3 and a bit months and they are about £24.00 plus a small postage charge. Thing is they work which is a God send. Take care Angie xx

[PMRpro Ambassador in reply to saffron52]

I have to confess to not understanding this! You have them in your mouth overnight until they are dissolved - but you haven't swallowed anything?

[saffron52]

Yes that is right they stick really very well to the top outside of your upper gum and cheek and slowly dissolves overnight. They stimulate the saliva glands in your mouth throughout the night and allow you to wake in the morning with a lubricated fresh mouth. I was a bit worried when I first started with them about 18 months ago that they would dislodge and I would wake up choking but they have never moved overnight and by morning there is nothing left of them. When you put them against the upper gum they have a glue coating on that side and you hold them for about 10 to 15 seconds and hey presto stuck. I do not even feel them being in my mouth overnight and sleep well with them in. I panic if I have forgot to order them as I really cannot do without them now. Best thing I have ever found on the internet and a low tech solution to an annoying problem. Doctors had never heard to them or my Dentist so might have taught them something for a change! Angie xxx

[PMRpro Ambassador in reply to saffron52]

Yes - I get that. But if they are dissolving overnight - you must be swallowing it with the saliva during the night.

[saffron52]

Yes you are right and it can produce side effects in some people but I think it is stated that Xylitol is very well tolerated by most people. They are found in chewing gum, peanut butter and is used as a sweetner. It is good for your teeth and keeps the bacteria from proliferating in your mouth and keeps down tooth decay. It does contain some carbohydrates but not a huge amount and probably would not alter any weight regime. It is useful for diabetics and it does not raise Blood sugar levels or cause spikes. I decided on balance that I would use them as first thing in the morning it was awful to try and drink and waking at night to take sips of water was tiring me out. Take care Angie xxx

[Telian]

Sounds marvellous, I'm pleased they are helping your problem. Do you get any tummy problems? I think the Xylitol is in sugar free mints etc and if I have too many I get tummy issues.

[saffron52 in reply to Telian]

Hi Telian

No I have been using them for about 18 months now and never have any problems with my tummy. I only use two tablets at night when my dry mouth is at its worse, and they do dissolve slowly over 6 to 7 hours so you do not get an enormous hit of Xylitol all at once unlike say chewing gum. I have also found that my dry mouth is a lot better during the day now using theses tablets and all I do is keep up my liquid intake. There has been some research I believe about Xylitol and it concluded that stomach problems could appear after three years of use. I think they are the best thing since sliced bread as I was unable to talk (my hubby might have liked it that way) first things in the morning as my mouth was so dry and cracked. It is now bliss to be able to just wake up chat and have drink so I will just keep watching for any symptoms from them but hopefully there will not be any.

Hope that helps. Take care Angie xxx

[Telian]

Thank you Angie it does.

I do feel for you, my dermatologist thinks I might have Sjogrens but my symptoms are nothing like yours, you describe exactly as my GP says I should be to have it. I am pleased you get some relief and know how to manage it, we've enough to contend with without all these 'extras'. Keep well, Terri xx

[saffron52 in reply to Telian]

Hi Telian I have spoken to my GP about my dry mouth and eyes and suggested it might be Sjogrens syndrome but she said no it definitely is NOT. So that is when I decided to do some digging myself and found the Xylitol tabs. Also for dry eye my Omega 3 fish oils twice daily plus my Vaseline treatment of just putting the smallest about on the outer corners of your eyes to stop the tears making it sore. Now my eyes are no longer sore day/night I do not touch them at all throughout the day/night and they never feel dry or irritated now, so low tech but works for me. Take care Angie xxxxx

[PMRpro Ambassador in reply to saffron52]

On what grounds does she say it is definitely NOT Sjogren's? Has she had a lip biopsy done? That is the only definitive test. And you can have something called sicca syndrome - other than the name the same except for the antibodies. Symptoms rule...

[saffron52 in reply to PMRpro]

I totally agree with you PMRpro and I would definitely have pressed my point but have quite a lot going on at the moment. I have since the 1980's been allergic to "something" which has given me extremely bad bouts of sickness, diarrhea and very low blood pressure have had about 12 attacks over those years. I have been to the GP on a few occasions described attacks and told they were a food intolerance so just put up with it. Very hard to avoid something if you do not know what you are avoiding. Figured out so I thought that it was alcohol related, though I do not drink much I did like a glass of wine occasionally, so since the 80's I have never drunk alcohol even if used in cooking. Then 2016 had my first devasting anaphylaxis after a restaurant meal I nearly died (BP was 44/22) I had not to my knowledge eaten/drunk anything that could have caused it. I then was given 2 Epipens which I always carry. Roll on 2017 I was at home and had some soup, Christmas time and I was busy so opened a can, I was wary of sulphites and checked label OK down with anaphylaxis again rushed to hospital. So got into gear asked for a referral to an allergy specialist the local one was useless who had kept me waiting for 18 months. So looked around and found Professor Krisna at the Birmingham Chest Clinic, who I have seen and he thinks it might be mastocytosis/ideopathic anaphylaxis put me on histamines - oh joy on that one. So I am awaiting a bone marrow biopsy at the end of September to find out whether my mast cells are faulty. So what with PMR diagnosed Feb this year I am in a bit of a bad zone for health at the moment, but will ask Prof Krisna about my dry mouth/eyes or the hematologists.Wee bit fed up at the moment and the family are dreading this Christmas as it seems to be getting to be a tradition with me!!!!!

Thought you might be interested as I seem to remember someone on this site saying they had anaphylaxis from rubarb. Sorry so long Take care Angie xxxx

[PMRpro Ambassador in reply to saffron52]

I am interested - I have something similar to your early attacks in response to (probably) something in some red wines. It wakes me about 3am-ish with a churning stomach and culminates in the same as you though I have never checked my BP (too busy doing other things). I was referred to immunology at Newcastle where a very sensible and practical immunologist said it bore all the hallmarks of a food allergy reaction but we could look for 20 years and still not decide what it was. I should always take antihistamines before drinking red wine. I did query "but you shouldn't mix alcohol and antihistamines it says" - "Pfft - no problem at all..." she said.

So I did that for ages and the problem did go away. However - I have now discovered that if I take a couple of loratidine when I wake that aborts the attack! I never drink red wine away from home unless it is one I know is OK. But PMR put me off heavy reds anyway - and our local stuff is very light and I'm fine with it. I've been lucky - hasn't gone any further yet but it must be terrifying when you have no idea what it is.

[saffron52]

Yep it was the ambulance that took me BP on the first session, even they were a bit impressed but knew nothing about it much as I am usually unconscious. To add insult to injury on the first one 2016 I got in the car 10 mins later told hubby stop I felt really ill and got out and lent over a farm gate (we were in the middle of nowhere) and as I turned to say it is my allergy I dropped like a fainting goat and had severe whiplash to my neck. All the while I was steaming like a racehorse after a race. Second one was not so bad but started to go into anaphylaxis feet up and Epipen administered which definitely helped with the sickness etc. but I drifted in and out of consciousness the paramedics worked on me in my bathroom upstairs for an hour but OK in the end I insisted on walking down stairs I did not want their stretcher making a mess of my walls. I had to laugh one of the paramedics said it was the nicest bathroom he had been in for a long time bless! Red wine is the worse not only does it have naturally occurring sulphites in but is cleared with them as well so double trouble. Also, sundried tomatoes have sulphites in naturally in the skins, it is a pain trying to eat out, it is like a lottery but now I have printed cards to send to the kitchen which wakes them up a bit. I still feel the trigger is sulphites initially and the mast cells start off. But it can be down to a number of things which create a perfect storm so will wait and see. I am so glad everything is ok for you I would kill for just a small glass of wine or alcohol of any sort would be nice. Angie xxxx