Hi All
Does anyone have Sjogrens as well as RA? I have many of the symptoms of Sjogrens but I can’t see my rheumy for a while so I am self diagnosing but I’m pretty sure that’s what it is. I wondered whether anyone has found any otc remedies that help? The worst symptom at the moment is that my throat is sooo dry in the morning that I have a sore throat. That usually goes but it’s stayed all day today.
Yes, I do. I have dry eyes, but actually also dry ears, dry mouth, dry everything….
I have discovered that dairy triggers it, so does sugar. I really don’t do well with the pastilles and other remedies offered, so manage it with my diet. I find coconut water is pretty good to sip.
Was it Serena Williams who has Sjogrens, she wrote about her experiences and how she manages it.
Hope this helps.
It is the other sister, Venus Williams who has had Sjögrens for years…& it has been mentioned on here before …that although everybody’s Sjögrens is different, if you are fortunate enough to have regular access to your doctors, some with the disease can lead the energetic sporting life that she has had.
my husband has it - he uses lubricant eye drops but finds the meds given for his dry mouth doesn’t help and he struggles swallowing- interestingly when he first started with RA it was his eyes affected - he takes a low dose steroid which helps
Hi Bizzie, I find Salivize spray helps through the night I get it free on prescription. , tried all the lozenges etc, not much use. usually carry a bottle of carbonated water around with me and sip on that it helps. As Brushwork said Dairy, sugar, also doesn’t help me so keep in moderation. Dry eyes I use Hydrosan, the blue box it keeps for six months with no added chemicals. This was recommended and I find it helpful. Give it a try, hope this helps you. 🤗 x
Hi Bizzie. I suffered from severely dry eyes and mouth around the menopause and the symptoms were put down to my age, even though I asked about sjogrens. I'm now early 60s and things are much better (I can cry again!!!), so menopause was possibly the primary trigger in my case.
For dry eyes I found hycosan extra the most effective drops, and a heated eye pad to unblock the meibomian glands, which definitely helped. A friend who has had dry eyes for 30 years recommends the new heated wands for eyes.
For the mouth, I found xylimelts great for night time (slow-release xylitol lozenges that stick to your gum) and I occasionally used them during the day, too - especially if I needed to be able to talk for quite a while, as talking dries the mouth. I also found sips of coconut water far more effective than water to relieve the dry mouth.
Hope this helps until you can get to see a rheumy
I am similar to you. I haven't had it diagnosed I thought it was pointless going to the docs because there isn't anything they can do about it. My worst problem is getting food stuck. It is very frightening and I feel like I am going to choke. I can't swallow dry food, like a sandwich without having a drink with it. My eyes have been verycdry for many years and I am prescribed eye drops, Blephasol lotion twics a day and heat bag every day. I also have a humidifier for whem the central heating is on.
My optician discovered I have dry eyes , and I've had a dry mouth for about 4 months. I haven't had it diagnosed either, but will speak to my rheumy about it at my appointment next week.
Hi , I have sjorens it was my option who told me then referred me to GP been on eye drops since , see GP or option 👍
hi Bizzie. Sorry to hear this. I have sjorgrens linked to RA and always have a dry mouth (especially at night) and dry eyes. I use oralieve gel for my mouth at night which helps a bit and Xailin gel for eyes in the day and xailin night for bed which gives me the best relief and was recommended by the eye doctor . Hope you find what works for you .
I have had dry eyes for a few years but the mouth dryness for about a year my rhemy has said he thinks it is siogrens and has asked my doctor to prescribe a mouth spray but havent found it much help I use sugar free chewing gum and sweets which I find just as good.
Yes, I have RA with Secondary Sjögren’s. As I can was born with a squint (my left eye was looking at my nose), even after two ops to straighten it, I’ve never had much vision in it. So, Sod’s Law means that I’ve had a corneal ulcer in my right eye and a torn retina (emergency laser treatment) and uveitis (or iritis). My eyes are very dry and I’ve used different eye drops some of which made it worse (both eyes). It seems I was having an allergic reaction to the preservatives in the drops/gels. I now only use Thealoz Duo day and night. One thing I cannot take anymore is Amitriptyline as it just dried everything up. As for my mouth, I have used Salivix Pastilles for years. I can’t stand the artificial saliva sprays as they make me feel sick. I can’t drink anything fizzy or any alcohol (I keep trying!) as it burns my mouth. I do use Duraphat toothpaste and Xerostom mouthwash recommended by my dentist. I also have an ultra-fry nose. The funny thing is that water doesn’t help, but coconut water does. Over the last couple of weeks I’ve suddenly started to dribble at night…. and I mean really dribble, soaking my pillow. What that all about. In the morning my mouth is dry again. 🤷🏼♀️ Any answers for that one? xx
oh dear Blackwitch that’s awful about your eyes. I’m sorry you’re having to deal with that on top of everything else.
I totally agree that water doesn’t really help and though I do think fizzy water mught, it gives me awful heartburn if I drink it regularly! Nothing is straightforward is it?
I’m too worried about using any eye medication until I speak to my consultant but I have sent off for some xylimelt night pastilles to see if they will help.
The only time I experienced dribbling at night was when I was on prednisolone. Are you on steroids at the moment?
I have been having regular intra-muscular Depo-Medrone steroid injections as I became intolerant of all the DMARDS. I’m now waiting to start on Benepali, and waiting, and waiting and waiting…… ☹️ xx
I'm not diagnosed yet with RA / Sjogrens but my body is defo getting there. I also have dry everything which has got a lot worse recently. Dry mouth and throat wake me up regularly and the only things I've found that gets me off to sleep again and keeps my mouth 'lubricated' and comfortable is chewing a piece of Peppersmith sugar free gum. I wake up with it still in my mouth usually. So far I have never swallowed it!!
Hello BizzieMany symptoms of Sjogrens and RA overlap such as the joint pains in fingers, wrists, shoulders etc.
The dry mouth and eyes are more specific to sjogrens and the lack of saliva tend to lead to frequent sore throats . Do make sure you hydrate all day with little sips of water . I carry my water bottle everywhere now.
An anti inflammatory diet helps in the long run .
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