Hello -Please can anyone help me
I have Sjogren's syndrome - with rheumatoid arthritis, very dry mouth and eyes
I am taking numerous medications recommended by the medical professionals I'm seeing however have not had any improvement in my symptoms.
Could anyone please recommend any alternative therapies or home remedies I can try as I am struggling to manage eating and coping with my sore dry mouth and eyes.
Thank you
Harry
Hi Harry I can So sympathise as I get it too and hate it. That's the problem all the drops,gels are temporary. I use biotene oral gel which helps in the night. One thing tho talk to the doc as I get a yearly salivary screening ultrasound which u may need if you don't already.
The only thing that helped mine a bit was when I had a stage of being more controlled with my ra.
There is a sjogrens disease society and I think Hu page too.
Hang on in there xx
I use eye drops prescribed by GP which is helping with sore eyes. I drink litres of water every day to help dry mouth
No idea about eyes but I talked to my consultant last week about dry mouth. Put simply it can only be managed not cured. My consultant said 'you won't hear this often but suck sweets" as a cruncher I chew, so have a packet of skittles handy or mini fruit sweets handy. Not peppermints they tend to burn. I also have prescribed Glandosane its good and tastes ok. I've tried a couple of other spays but that is best and remember do not swallow it. I find the worse thing is the vague salty taste.
Don't try to drink it off, it doesn't work . Just sip and try not to worry about it.
Medway lady, everything that I have read, and even my rheumy advises me to stay away from sweets. I used to chew gum all the time for nerves and dry mouth, but with my TMJ so bad and getting worse, it's all I can do to chew my food. I drink lots and lots of liquids, mainly flavored water and some fruit drinks. Even the pilocarpine doesn't help the dryness much, but it's better than nothing.
I'm sure that for you that is the right advice but my Doctor said differently. Dry mouth is also a side effect of some medications. I have good teeth, no gum problems and may be lucky, in that early diagnosis has meant little damage caused. Also have a good dentist and hygienist. My Doctor said sucking helps to lubricate but as I said drinking makes no difference as soon as swallowed the mouth is dry agin. Ask for a script for Glandosane. I recommend peppermint flavour, its actually quite nice. Try low sugar sweets there are lots on the market. But to be honest I think its a case of adapt as its not really treatable but if you do find something that does work let us all know please.
Hi I struggle every meal usually just eat soup
I've fought RA and Sjögren's for almost 40 years and mostly, until fairly recently, without the help of drugs, instead using complementary therapies, yoga, Pilates and diet. Unfortunately I have now needed to go onto Humira, but am still keeping as fit and active as possible.
I started having acupuncture regularly in 1986 when I was pregnant with my first child and have used it ever since. There are 2 different types, 5 element and TCM, traditional Chinese medicine. I find that TCM works much better for me....so worth trying more than one practitioner if the first one doesn't seem to help. And always try to go to someone who has been recommended by someone you trust.
I also see a McTimoney chiropractor regularly. It's a very gentle type of chiropractic.
Do you have high CRP and ESR? They might well respond to diet changes. There was an interesting 'food hospital' programme a few years back on Channel 4 which looked at this and lots of us have found that changing our eating habits can help. Culprits are often meat, wheat, sugar and dairy, but it varies from person to person. Eating less processed foods and more organic is also worth trying.
It's something you have to experiment with and find out for yourself what helps. It's helped me which is why I suggest it. The first thing I dropped was meat...only meant to do it for 2 weeks to see if it made any difference, and never ate it again and that was in 1982! Sugar also is a problem for me...I vary in how strict I am depending on how my joints are. My wrists swell up within 24 hours if I eat bread and jam as I did recently on a French holiday!
Are you able to swim? It's a gentle way to keep joints mobile. Have you tried yoga ever? Good for calming the nerves and helps with relaxation....
And fish oils are the one thing with an evidence base for helping with RA and worth trying. Hope some of this helps!
If you feel like talking to someone the NRAS have a good helpline: 0800 298 7650.
Hope it all goes well
Matilda7, how did you first find out that you had Sjogrens and RA? Were you actually diagnosed with it that many years ago? I have suffered with them for years, but was just diagnosed. I am exercising regularly, go to my gym for activities, and am getting ready to start yoga classes. I have also just started changing my diet, leaving off red meats, sweets, breads, crackers, processed foods, fried foods, etc. I eat plenty fresh fruits, fresh vegetables and fish, especially salmon, and tuna. I take several kinds of vitamins, but haven't started the fish oils yet, but plan to. What is CRP and ESR? I haven't tried acupuncture yet, but plan to very soon. Oh, another question....I'm gaining weight, even though I don't eat much and work out and move constantly, (except when I get too depressed and sleep a lot). Is it the RA or the methotrexate that I'm taking that could be causing the weight gain?
I was diagnosed with RA in 1978 and with Sjögren's about 1980, because I have very dry eyes. My mouth isn't so much of a problem except that I have to be ultra careful about cleaning my teeth and seeing a hygienist because so susceptible to gum problems.
Weight problems genenerally related to taking steroids, eating too much or doing too little!
Sounds like you are doing all the sensible things. Well done! Might be worth thinking about dairy products....is there anything you'd find really difficult to give up? That is sometimes a clue as to what to eliminate...
CRP is C reactive protein and ESR is erythrocyte sedimentation rate....both are inflammatory blood markers.
I have Sjorgens as well as ra,but to be honest as has been said before anything for sjorgens is temporary and though i have drops which i do use when my eyes are really bad,and gel for the night time which i hardly use as i don't find an benefit from. My mouth burns as well.xxxx
Harry, As I tell my rheumy, one of the worst things that I am suffering with is the constantly dry mouth and scratchy, dry eyes. My mouth actually gets painfully dry, so bad that I can't speak at times, and it's embarrassing! Even though I drink constantly, and take pilocarpine, and just had it increased, it still doesn't help a lot. I drink all day and all night, and urinate all night. Not conducive to sleep. What meds are you taking for the Sjogren's? I also constantly use lip balm and gels or rinses to try to help with the dryness, but nothing works that well.
Try Omega 7 Sea buckthorn capsules, they are quite expensive but I have noticed an improvement since taking them for the last 4 months along with eye ointment, optive 0.5% carmellose and salivese spray. They take a wee while to work but assist in lubricating the mucus membranes in your body, so work in all areas. I have Ra, secondary sjogrens and fybromyalgia. I've been on humira for the last 7 years as I failed all other meds before this. You can order then on amazon. 😊
My rheumy told me to buy hypromellose eye drops from the chemist for dry eyes. They don't need a px & can be used as often as you need. They should be discarded after 3 months. Does the job for me. Linda
Hi Harry,
I've got the same lovely set of things to manage. I'm practically surgically attached to my water bottle. Without regular swigs my tongue stick to my mouth and it feels horrible. I had Biotene gel which I didn't like (the texture in my mouth mainly) but the mouthwash helps. It's on my prescription list. I didn't realise until I had some dental problems that Sjogrens can cause issues. I'm now a regular attendee at the dentist/hygienist, as others have said. The problems seemed to have been halted but I know that regular checks are essential. The dentist prescribed a high fluoride tooth past which I'm sure has helped
My eyes are very dry and have caused major problems. I now take Flax Seed Oil which some nurses in the Eye Unit said had helped some patients. I also had a short procedure to seal my tear ducts so the drops stay in longer. Almost constant water drinking and eye drops (keeps things under control. Vita Pos ointment, like a gel, helps at night and I'm using them more. They do make your vision a bit bleary so I don't use them at work during the day!
Eye drops Celuvisc 1% and Eye Lube, the over the counter ones aren't enough if you have severe symptoms
As ever with RA etc, you will now need to find out what works for you as it is so individual.
Wishing you all the very best
Michele
Hi, I have dry mouth due to the amount of meds I take. My Pharmacist recommended SALIVIX - Salivary Stimulant sugar free pastilles, which you can get on prescription in the UK. They are made by Jemedic AB in Sweden.
Have you tried contacting the BSSA (British Sjogren's Syndrome Association)?
They have a helpline and may be able to offer you some good tips to manage these symptoms.
Victoria
(NRAS)
Thankyou for the response...I am trying everything!
THANK YOU to everyone who has responded to my plea! I shall act on any suggestion that I have not tried.
For the last two days I have been applying Ale Vera gel and sipping pure Aloe Vera liquid. I pray for some improvement for the mouth.
My eye consultant was talking about 'plugging' my eyes if the drops/ointment does not work by Feb end. My RA consultant said not to have any op until either the Methotrexate has worked (I am on week 11) or the biological agent, which is the next stage.
I need your support please!
Harry
I had the punctal plugs you referred to. They dissolve slowly so need replacing every 3 months or so. I then had a superior punctal cautery, which is where the ophthalmic surgeon inserts a hot wire into the side of your eye. This forms scar tissue in the little channel which drains away tears from your eyes. So essentially the small amount of tears you do produce stay in your eyes. This procedure has meant that instead of using eye drops every half hour, I only need them a few times a day. Not perfect but much improved.
You can get goggles for when walking in windy conditions as the wind increases the evaporation rate of your tears.
I try to minimize putting the heating on (esp at night in bedroom) as this dries out the air. When you are asleep you are not blinking, and blinking causes tears to be produced, so night time can be a problem. Try applying drops & then the gel-type drops (vaseline-type texture) on top of them. This should be done just before you close your eyes to sleep if possible!
My opthalmologist recommended flax seed supplements - this improves the quality of your tear film, although not the quantity. Sjogrens can affect both quality & quantity of tears.
For the dry mouth, try zylimelts - very useful for at night & occasions where you cannot drink copious amounts of water (the airport!). They stick to the inside of your mouth & help to stimulate some saliva, but it means you don't have to have a sweet in your mouth all the time. And they are sugar free & contain zylitol so are good for your teeth. I bought them online (mouthulcers.co.UK).
Only use alcohol free mouth washes as alcohol dries your mouth.
Go to the dentist min of every 6 months as you are more susceptible to cavities
If you can find sugar free lemon drops, the sourness helps stimulate saliva also.
Sending you best wishes!
I have suffered from a dry mouth for some years now but I have since purchased a humidifier for the problem. It is made by Pure and delivers ultrasonic cool water mist all night. It has alleviated my dry mouth. My tongue no longer sticks to the roof of my mouth and I no longer need to wake up for a drink of water. It is silent running and I have found it a great relief. it was recommended to me by my brother in law for the same problem. It cost me about £30.00.... well worth it.
Where did you buy please? On Amazon there is a:
The Pure Factory Humidifier 4litre - 45 pounds.
I am desperate!
Harry
I am in hospital at the moment.... hopefully out by weekend and I will check then. By the way it is the 3 litre model
amazon.co.uk/PureAire-12094...
try this.... wifi back on
Unfortunately many of the RA meds make your eyes and mouth even dryer. I have suffered from dry eyes and mouth for a long time and have noticed that pain medication makes the dryness worse. I have however been able to control the situation quite well by using good eye drops, daily dose of vit. A (25000iu), Q10 200mg/daily, drinking lots of water. I am not using RA meds.
Re: the suggestion to use low sugar lozenges to suck on. Be very careful of sugar-free (as we call them here in the US, but if you get too much diarrhea is the result). We were warned about this when my daughter was diagnosed as being hypoglycemic. Just a word of warning.
Ann
Hi I’m the same I can’t get food down and the weight is just dropping off, me eyes are still dry and sore although I’m putting drops in all day and ointment at night, it’s a terrible complaint and you seem to have to live with it
Dry mouth!
Dry mouth
Dry eyes
Dry eyes
methotrexate and a dry mouth
