Good morning all, I am very new to this group.I was diagnosed with Sjorgans syndrome in August 2023, but very obvious it has been 'hanging' around for a while as the various aches and pains and other symptoms were there but only really showed up in blood tests in August.
My mouth is dry but I drink a lot of water, my left side of my face is swollen,more on some days than others, face feels tingly and constantly feels like a cold is coming on.
The main reason for my post this morning is my dry sore eyes, which I just cant seem to get under control, despite using various over the counter eye drops, just bought Viscotears, which also doesnt have long lasting relief despite me applying 4 times in the day.
My GP surgery has told me they no longer prescribe eye drops? Have to purchase over the counter.
Any advice would be so very welcome thank you.
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Den73
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Thank you weathervane for ypur comments.I will try and see if the GP or the rheumatologist will prescribe the drops.
And will continue with the warm face cloth for a while.
There is one question I have, if you are able to answer maybe it has not happened to you? my eyes are swollen and red and the left eye sort of jumps but freezes for a split second and that has just started this morning and isvery uncomfortable, is that all to do with the dry eyes?
I think I get that as well , is it like a nerve jumping in your eye . I get this when Im particularly fatigued. Opticians can also provide good advice.
Yes that is quite right, when I am really fatigued was just worried asmy eyes are also very blurry and fuzzy like and not good at seeing the tv and reading despite the fact that I have just had my eyes tested and received new glasses,but the eyes wetenot so bad then, about 6 weeks ago.Thank you for your advice, so appreciated.
Hi. I have Sjogrens and I'm prescribed hyloforte eye drops although this has just been changed to Clinoptic which is another preservative free eye drop. I'm also prescribed Xalin night time gel. The drops I use about four times a day and the gel is put inside my eyelids at night.Viscotears has carbomer in it's ingredients and it may be that your reacting to the carbomer. Best to go with preservative free. Your GP should be able to prescribe both of these if your specialist who diagnosed you has written to your GP.
I also use eye masks. I have a USB heated one which I use everyday for twenty minutes. It's got a timer on it so will turn off automatically. I also have another gel one in my freezer which I use during the summer months when my eyes tend to be more itchy n scratchy.
This group is fairly quiet but if you were to post on the lupus UK group you will get more responses as many of us with lupus also have Sjogrens.
You're most welcome 🤗Do you have your letter from the appt with your rheumatologist? It should say under diagnosis that you've got Sjogrens. It might even give recommendations for the eye treatments.
I did actually buy Hyloforte on Amazon initially and then when I told my GP that they suited me I asked her to prescribe them along with the night time gel. This was following guidance given on the lupus forum. So come on over..you'll be amongst friends 😁💜🌈xx
Yes the letter states Sjorgens, polymyalgia and GCT.No treatment given because my liver bloods were not good, but they have come back to normal now, so maybe now the rheumatologist can prescribe something .
No advice given if there should be a problem, just confirming the next telephone appointment will be in 4 months.
I have sent an email to the nurses in rheumatology asking for the eye drops and also possibly an appointment with an opthomologist to check.
hi I have Sjogrens and Lupus and have numerous problems with my eyes caused by these diseases. My gp pointed me in the direction of eye emergency help line, they deal with eye problems instead of gp, think they cover England. It may be worth giving them a ring, perhaps they can help they get eye dr to call back and give you advise the number 0300 303. 4922. I have called them twice and got help both times. Wishing you luck
Thank you for info provided StriatedCaracara, very interesting.I have an appointment with the opthomologist only in August! But truing to get it brought forward.
I did manage to get eye drops tgat was recommended , Clinoptic, which is giving me some relief for now so that I am coping better they still very troublesome at times though, so hopefully the opthomologist can help further.
Your rheumatologist should have referred you to an ophthalmologist as soon as your diagnosed. You can see an optician but find one who knows about sjogrens. When I was diagnosed I went to a private eye clinic suggested by my Rheumatologist and I got a baseline eye health check and scans before taking hydroxychloroquine. A professional will help with the strength of eye drop you need. I was on hylo forte drops but I have had to get stronger drops as time has moved on. Spray actimist on your eyes after you put your drops in as its oily and seals the drops in. My pain relief go to every day is a heated iusb eye mask. 20 mins twice a day works wonders for me, stear clear of microwave masks as they cool too quick. It may be your meibomium glands are a cause of some of your pain and the heat melts them as with sjogrens your eye oil can turn buttery over a few hours. So get a hot eye mask, get professional eye advice and check up from a sjogrens ophthalmologist/optician and I concur that an eye gel at night like hycosan night does wonders, don't forget actimist spray in each eye after applying drops and make sure all drops and spray are preservative free, preservatives can cause more pain. There is a shortage of eye drops and gels at the moment which doesn't help. All your eye drops and gels you can get on prescription and I suggest getting a prepayment certificate from the NHS which is about £120 a year. Unless your a pensioner then it's free.
For dty mouth try xylimelts. They stick to your gum and last an hour or two and give you saliva. Xylitol is good for teeth and gums so that's a bonus. Not cheap but a life saver especially at night. Amazon sell them. Bach remedy pastilles are good too and again no sugar just xylitol in them so teeth don't suffer. You can also get some mouth gels and mouthwashes for dry mouth on prescription but not xylimelts.
You can get everything under control with professional advice and help from fellow sufferers. Find a good gp who can go through what's available on prescription to help you. Hydroxychloroquine will help after a few months and a tablet called pilocarpine which your rheumy should prescribe although it has stomach and bowel side effects yet helps your body produce moisture.
Oh wow dg70 how helpful I found your advice, I feel very abandoned at the moment, absolutely no help offered whatsoever, even being admitted by the one gp he knows nothing about Sjorgens and basically brushed me off...cant make contact with the rheumatologist was told when I called yesterday they are rheumatologists and dont refer patients to eye specialists??? Gp told me to go get checked out by an optician and they will refer me to opthomologist if they think it necessary, so I called specsavers, thats who I use for my eye testing, and was very abrubtly told they are not doctors they test eyes.....so after all that felt really left out in the cold, which has got me worried as I know there are more serious things that could happen with Sjorgens. ...what then? I bought a usb hot eye mask from amazon arriving today.
I would just like to add a big shout out of thanks to the ladies on the forum who have been so encouraging with very good advice, very much appreciated to all.
Ring round and find another optician as an interim measure. I go to a smaller chain opticians and the optician there knows about Sjogrens. They all have eye drops at every optician so they should all be geared up for dry eye. I would search out a private eye clinic with good recommendation and get a thorough set of scans and tests. Mine just cost £300 (it is well worth it). The Ophthalmologist said their equipment is much more high tech than the nhs so you get a better service. I get a check every one to two years and I know they can see the minutest of changes if there are any. He also gives my Meibomian glands a good squeeze to clear any blockages every time I go. In any case you should have been referred to Ophthalmology through the Rheumy or GP and that's poor indeed not getting help as our eyes are so delicate and you need advice. Don't expect the health service to be that helpful though. I have had awful experiences and good in equal measure. There may be someone on here who can recommend a good eye clinic or opticians near you that you can go to if you put a message out on here. If not try ringing the helpline on BSSA site. They may be able to give a suggestion or tell you if there is a sjogrens group near you that you can contact and they may have recommendations as to where the best opticians/ophthalmologists are. We have a whatsapp group in Wiltshire and there are many over the country. Dr Elizabeth Price has a good broadcast on you tube I think under BSSA webinar Elizabeth Price - Looking after yourself you can learn a lot from that. I was lucky I was diagnosed by her by chance as I live near Swindon but she takes referrals privately all over the country and works for the NHS too.
I'm sad that your Rheumatologist does not work in conjunction with ophthalmology. I go to a Lupus specialist centre hospital which has a specialist Rheumatology Centre and they have to meet certain standards to qualify and the Rheumy co-ordinates my care to a degree as in Ophthalmology, Physio, Occ Therapy, Nephrology etc... when needed. I go every six months and there is an advice line if I have a flare up. If only all hospitals and Rheumatologists could follow these guidelines! If you're in London you have more chance of hitting on good care and competent specialists but you'll find you may need to seek out a good GP and Rheumatologist to help with your care if not its like banging your head against a brick wall. Research local hospitals and rheumatologists as to what they specialise in (look for connective tissue disorders or autoimmune). Some of us mix and match with private and nhs just to get decent care and advice. Don't be afraid to get second opinions its your life and health and this is a condition that affects much more than eyes and mouth. It's throat, lungs, gut, brain, kidneys, heart, skin, urinary system etc....not to mention the fatigue. It's a connective tissue disorder and we have connective tissue from top to bottom in our body. Good luck your fight is just beginning but hopefully some of us can help you who have been fighting for years and know a few short cuts and hints and tips.
Thank you dg70 for the comprehensive information, I will have a good chat with my gp when I see her on 8th Feb and outline my concerns.So much to allow ones mind to take in!
But forewarned is forearmed.....so yes may ask for a 2nd opinion. I have sent an email to the rheumatologist if I dont get a response by the 8th think I will request a new rheumatologist, hopefully one that will be more helpful, he should have told me all I have read here on this very helpful site.......you are all so appreciated and doing such fine work in the encouragement and advice received so a very big thank you.
Hope all goes well. Learn as much as you can about sjogrens it helps when talking to professionals. Keep a symptom diary . A warning, before I was diagnosed I was riddled with kidney stones and unaware until rushed into a and e. I lost a kidney and had stones removed from the other. Just one issue we can suffer from (kidney stones). I have to pay for a urology check up every 2 years though, nhs won't. Gives me piece of mind though. Hope things improve for you soon.
Hi Den73, I'm so sorry for your issues with your eyes. I've had horrific issues with mine. I have Sjogrens syndrome & acute dry eyes as well as having Blepharitis for about 10 years before.
You need your optician to help, discuss and prescribe eye drops and creams for you asap please. I use Hylo-Forte preservative free 0.02% eye drops x6 in each eye daily. At night & just b4 laying down I use Xailin night eye ointment by putting about 1 cm in both eyes. In addition I use a heated mask 1 to 2 times each week to help remove all the dirt, debris, oils, etc from my eyes. Because my eyes were so bad I see a specialist at a private clinic via the NHS as I kept going blind and couldn't tolerate any form of light (still do sometimes ☹️). I had plugs put in x2 as my tear ducts were blocked & 4 months of steroids on top of it all. It was all an horrific and terrifying experience, going to the Dr, the hospital abd to see the consultant, that I thought would never end, but I'm so happy it's all turned around and my consultants company is available 24 hours a day to me now. Throughout, the state of my outer eyes were shocking abd scary, just for it to sort itself out. Please get help ASAP. If your gp won't help, just keep going to your local A&E. All the best 😍
Thank you great advice, I realise I am going to have to be more forceful and dont just accept their brush off's ...way too serious condition for that, I realise that now.
Like many others, I have various eye drops on prescription so there are plenty available to GPs. Stronger ones can be prescribed by an eye consultant so being referred could be important if other things aren't enough. Someone has already mentioned that in England, some high street opticians are part of the Primary Eye Care Scheme primaryeyecare.co.uk/ and you can self-refer without your GP. They can then refer you on to a consultant if necessary.
You may need to try different eye drops to see what suits you. Preservative free are best. I got irritation with Viscotears, Hydramed and Theoloz Duo. Only one that really eases my eyes is Hylo Forte which GP surgery withdrew for several months so I had to buy it. Back on prescription now thankfully. Eyes so dry they get stuck to my eyelids. All sorts of odd pains/fuzziness normal for me. Dropped by Rheumatology not long after diagnosis. Left to get on with it for years now. GP only so have to keep going back with the various problems. Paid for private Rheumatology consultation. Seemed irritated with me but at least got me referred to NHS Pain Clinic who were very helpful as my Sjogren's has caused very painful small fibre neuropathy in my feet and legs. Many people don't get that tough.
Prescribed Salivix pastilles for dry mouth but shortage and they can't access at the moment. I find the fatigue is the hardest and wanting to be able to do more. A hard condition, but helps to try different things, find out what suits you.
Oh goodness Katerina1 sounds like my symptoms, I have just started really but each week there is a new symptom🫣 my eyes and yes definitely the fatigue is the worse,my mouth not too dry but the beginnings I am sure. My feet are also started with neuropathy, not too painful yet but no feeling in the right foot, I massage arnica oil and that seems to give relief. But my head constantly feels like i have a head cold...probably brain fog? The shakes ...just so many different things, so trying to take it all in. The rheumatologist hasnt been very helpful, which has surprised me as especially with my eyes he warned me my sight could be permanently affected but he has done nothing about seeing that I'm getting the care I need??? Find it really strange, cant contact him, so going to see if I can be referred to another one maybe? I see my GP now on 8th Feb Eye drops I was given Clinoptic and today they are feeling much better, yes the Viscotears didn't agree with me either made them worse. Quite a journey we are all on,but with encouragement and advice amongst us will definitely help, so thank you all.
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