it looks like I have secondary Sjogrens to my lupus sle. My hair is thinning at a rapid pace (😞) and now due to dry mouth I have mouth cuts (angular cheilitis I think it’s called)
I’m not due to see my consultant rheumatologist until later in the year (but I did speak to a registrar last week) but wondered if anyone had any advice or recommendations for any topical treatments I can try in the meantime? I know it’s a salivary issue but thought it’s worth a shot.
I have to say I’m pretty fed atm!
Any advice would be much appreciated. x
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Sin123
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Hi I have the same and suffer the same issues.for my eyes I just use hypomellose eye drops.for the deep cracks I get in my lips blistex is the only thing that helps heal them.im prescribed salivix pastels for dry mouth and daktarin helps with the angular cheilitis.bookish recommended olive oil or honey but I've not tried them yet xx
Thank you! Interesting you use hypomellose eye drops. I’ve been using the additive free drops as my rheumy advised but they’re just so expensive and now my eyes are getting worse I may have to switch. Seems like they work ok for you so that’s encouraging. x
My eyes tend to itch or burn and feel gritty.due to shielding and wanting to pull my eyeballs out I I ordered some from amazon 3 bottles for about £5.i find they help soothe. X
If you have sicca / Sjögren’s then you should be able to get preservative free drops eg Hyloforte on prescription - which could be cheaper? I take a prescription med called Pilocaropine which isn’t doing much for me so far but apparently it’s meant up help with oral dryness and angular cheilitis and also with eyes and digestive system.
Really? I’ve been getting them (3 kinds plus night ointment and Oralieve gel and salivex ) for 8 years now. I think I had to nudge my old GP a bit about the Hyloforte but since then I’ve always had all Sjögren’s related topical treatments on prescription.
Maybe I just got lucky all those years ago? The dentist in my area wouldn’t prescribe Duraphat toothpaste. I had to change dentists to a neighbouring county and the next one showers me with the stuff whenever I ask 🤷🏼♀️
My mum has had eye drops for years and still gets them.i dont know if some are ignorant to our needs or what.i saw a gp at my practise about 5 yrs ago about my breathing he didnt even listen to my chest just said I shouldn't need the meds for my heart etc etc ..I accused him of cost cutting and walked out.i was in hospital 5 days later with bi lateral pneumonia.since then I've had everything I've needed except the drops x
P.s he was one of a few who told me things were all in my head !
Heck that would have been a leveller for him indeed! Maybe you should remind them and ask if they want the same thing to happen with your eyes ie medical emergency due to being blinded by corneal abrasions?!
Well he’s probably/ hopefully learnt a very important lesson from this. I don’t think Glaucoma or Hydroxichloraquine in themselves warrant prescription drops for sicca. The dry eye of Sjögren’s is a different beastie to those. Most sufferers have 3 types of dry eye disease so we have to hit it three ways. My ophthalmologist wrote explaining this to my GP a few years ago but like you I tend to get given what I ask them for now anyway.
I was told gps wont prescribe drops anymore and I got the additive free ones from the opticians when I had my eyes tested for starting hydroxchloroquine.
Hi, as I have a few autoimmune conditions just wanted to ask, have you been tested for thyroid problems? Hair thinning and dry eyes can be Autoimmune thyroid. Maybe if your not seeing your rhuematology consultant for a while you could ask your GP? Ask for full thyroid panel including antibodies.😁
I had to complain to my Rheumy for years about my eyes, they were really bad, eventually I saw an ophthalmologist, they did the schirmer’s test which showed how very dry my eyes were, he immediately put in the punctual plugs which for me was great, I only need drops in at night now, I do also suffer from blepharitis now and was glad my consultant saw how bad my eyes were. I used to be able to get antibiotic drops in the chemist but they are not allowed to sell them, they told me to pop into an optician and they will prescribe them. Only problem is they are all closed now. Last time I went in was December, he looked at my eye and looked under the eyelid and told me it was all bumpy as well, he gave me antibiotic cream and an allergy drop which between the both of them worked. My eyes were so sore even when closed. Agree with comment above that salivax pastilles are the best. Rheumy docs can’t really help with complaints they just try to help you control it, mine eventually did after me complaining all the time. I honestly can’t believe the difference now, I’m sure my eyes would have got continually worse, I tried every drop under the sun. My dentist even provides me with a special fluoride toothpaste as you are more prone to dental decay with a dry mouth. Sometimes I can’t talk my mouth is so dry, this is where the little salivax pastilles help.
I totally sympathise with you. I’m not sure if i have that too. I’m on fake tears & saliva. My eyes feel awful. (Plus i have Iritis & Glaucoma). So i still get nervous using the tears. My dry mouth’s driving me up the wall. I’m going to have my salivary glands checked next month. Only last night i was terrified. Because i didn’t have enough saliva to swallow. I woke up choking. I really panicked! My heart was racing.
My Rheumatologist said. If it’s not sjogren’s. It’s the menopause! (I’m 49). So i’m praying it’s the meno. Good luck with everything. Remember. ‘keep em washed!’ X
Re eyes, I get hyloforte on prescription... maybe you could tell your gp that your optician said you need that particular brand? That's what I did.
As for angular Cheilitis, i have recently been suffering massively. Be careful with anything minty or menthol - which rules out a lot of lip balms, because they're really irritating and can make matters worse. Simple vaseline is better, or I use something called lanolips if you're ok with lanolin. Also, a fungal cream helps me... I use daktarin cream. A dab first thing and last thing and when ever I remember during the day. It's the only thing that helped because vaseline wasn't shifting it and it was getting worse and not going after weeks. The other thing to do is make sure to wash toothpaste off your lips thoroughly after brushing your teeth because the sulfates in it are really bad for your skin and can aggravate.
It was making me really miserable a couple of weeks ago because I just couldn't shift it and I'd had it that side for around 6 weeks or more. Its finally gone now thanks to daktarin and flared up the other side last week and only lasted a few days so it works!
Can you get Systane Complete in the U.K. ? If I use it everyday it really helps with my dry eyes. It has to be the Complete though as there are other types. It lasts quite a while.
Also, honey is very good for dry mouth, as is sucking boiled sweets to get the salivary glands going.
Hi Sin123, so sorry to hear of your issues. I used to suffer with deep lip cracks quite a bit. I had breast cancer 12 years ago, when they actually diagnosed me with lupus. This has led to complications as I am going through the menopause. My lovely specialist nurse advised me to try seabuckthorn berry oil capsules.
I have been taking them daily now for almost a year. It was only reading your post that I realised I have not had any splitting or dryness with my lips for over 6 months now.
I also find that a daily Turmeric supplement helps with aches and pains and inflammation.
I know that I a very lucky that the specialists I see know that I work as an holistic therapist and prefer to try more natural remedies to manage my symptoms. I also do lots of self energy healing work too.
I would suggest that you check with your specialist before trying any remedies.
I am so sorry that you are suffering so badly. My Ophthalmologist prescribed Hylo-Forte and now I get it on repeat prescription from my GP. I find Neutrogena Norwegian Formula Lip salve better than anything for my lips. I use it all the time. I have one upstairs, one downstairs, one in my bag. I really hope that you get something that works for you xx
I was part of a study for sjogrens eye treatments where we tried a few different types of drops for a month each and they scanned our eyes before / after for dryness and longer term damage. The most effective in the short and longer term were found to be hydro-forte drops. I still use them and find they really help my eyes.
For your mouth, make sure you are under a decent dentist. My rheumatologist offered biotene mouthwash etc but my dentist was the real saviour. He prescribed high fluoride toothpaste to help with the decay from being so dry, and pastilles to suck on really dry days or when in hospital (can't drink as much). He also advised the use of sugar free mints with xylitol in them as this stimulates saliva. Carrying a bottle of water is a must.
For lips, blistex or burts bees both have really good lip balms with spf in them as well as lots or moisturising ingredients. Sun sense also does a really nice one that is also spf 50 so win win.
Hope these suggestions help and you get it under control.
One thing people may be overlooking is the use of masks and the development of angular cheilitis: wellandgood.com/mouth-sores...
I've had Sicca for years, but only recently developed this added insult!
Adding a drop or two of Vitamin E oil morning and night (after applying a natural lubricant lip creme and/or coconut oil) has been helpful for me, as well as nightly use of stick-on dry mouth melts (like Xylimelts).
Also, try limiting your time sweltering behind that mask!
I have A diagnosis of lupus ( skin ) and Sjogrens. Prior to diagnosis of Sjogrens I suffered from very sore stinging eyes, chronic mouth ulcers,
Lack of saliva particularly at night and very bad fatigue, thinning hair etc etc.
I live in Ireland so unfortunately have to pay for all medications and consultants fees.
I have been on Mepacrine a Malaria medication Since 2018 For Sjogrens and it works very well. No mouth ulcers, helps fatigue and only use eye drops a few times per week.
The only problem with Mepacrine it is available in UK & Ireland but not licences so very very expensive. €80 for 30 tablets !! Price went through the roof recently probably due to Trump recommending Malaria Medication.!!
I was told about BioXtra Toothpaste which is SLE FREE they also supply oral gel and artificial saliva. It really helps at night I find the gel better than spray. . Only take small sips of water during the night. Hope some of this helps.
B2 is what is recommended for this issue when I researched and read of others adding zinc also.
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