Has anyone else got Secondary Sjogren's Syndrome? - NRAS

NRAS
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Has anyone else got Secondary Sjogren's Syndrome?

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If so, what are you using to try and keep it under control? I use Beconase, Glandosane, and Hypromellose, but some days I can hardly keep my eyes open, they ache so much. They also get sore from putting so many eye drops in!

Kath

19 Replies
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Greetings-This is unlikely and uncommon.

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Hidden in reply to coetzeegisela

Not so rare. 25% of RA patients will develop Secondary Sjogrens I'm afraid.

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I use Celluvisc eye drops and Lacrilube ointment at night. Also Biotene gel and mouthwash. My symptoms have improved a little since usind Mtx. Have a look at the BSSA website, and also the TASSA group on Health unlocked.

Hi I have secondary sjorgrens a couple of years ago consultant tried me on hydroxyliquine and I came out in severe rash so had to stop. I'm on steroid eye drops all year round my eyes are chronically dry even using all these drops, clinitas drops viscotears gel and daloube drops at night...I find when weaned off steroid eye drops I get numerous ulcer occuring and my are they painful... Haven't had one since April this year...I also have my lower tear ducts blocked with tiny plugs which are permanent. I use biotene wash mouth and toothpaste. What annoys me is I have never had a doctor explain sjorgrens. It's only when I see my rheumatologist and its never explained to me. My esophagus is dry with inflammation with swalling problems which effects my stomach digesting food properly maybe sjorgrens to blame doctors not sure. My nasal passage are severely dry but using nasal sprays give me headaches. I find I'm allergic to every perfume household list goes on..makes me ill...my sinus swell and I get vertigo :( feel sick have a constant fuzzy head. I would say this is all to do with secondary sjorgrens...blooming miserable....tc Nicola :-)

Was it GP diagnosed, or was it actually tested by an opthalmologist - I'm just asking because its possible that there is something inflammatory going on in your eyes, rather than just sjogrens. I would say its worth getting a proper examination (needs someone with a slit lamp and other specialist equipment).

There are also loads of different "natural tears" drops and they all feel a bit different in your eyes. Ask your doctor or pharmacist to check if yours are preservative free, or if there are other brands you could try. I went through three different brands before I found one that didn't sting. I also have a really gloopy one for night time (lacrilube) - its more like an ointment, but it sure keeps my eyes moist overnight, which makes them feel better in the morning. Also, wear glasses outside, and make sure the air inside your house isn't too dry. If gas or electric heating is drying out the air too much, the easiest way to rehydrate the room is to just keep a bowl of water in any room with heating, and it will slowly evaporate.

Other than that, if it is just Sjogrens and not anything inflammatory, and you can't keep the dryness under control, then you can get punctal plugs put into your tear ducts - they are wee silicone plugs that stop your tears draining away so fast, so your eyes stay moister.

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Hidden in reply to earthwitch

Have you had your ANA checked yet? My rheumy told me that secondary autoimmune conditions such as Sjogrens and Raynauds are unlikely without a positive ANA although I too suffer from dry eyes - not as badly as you but I get hives and rashes around my mouth. I think this all goes with mixed comer connective tissue disorder group that RA is part of.

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Hi Kath, yes I suffer sjogrens as well, my eyes a nightmare. I have used all sorts of drops, creams etc. but find the creams distort my vision too badly due to the greasy film they leave behind. At the moment I am just using gel tears, simple but soothing.

Do you suffer with mouth problems also. I have terrible dry mouth and don't produce enough digestive secretions either so have suffered badly with tummy problems, like pancreatic cysts, IBS, and also crohns. I use special toothpaste, mouth wash, mouth gel, and have three monthly dental visits, but this sjogrens thing is a nightmare really.

The worst thing for me is I simply cannot see in the dark, I have had to stop all night driving which is a terrible problem for me. I recently saw an eye consultant who explained that having sjogrens has made the outer surface of my eyes rough so they cannot reflect light, and this is why I cannot tolerate the bright headlights or sunshine. How long after RA diagnosis did you get diagnosed with the sjogrens, mine was approx. seven years later but I had the problem for years, no one seemed to listen too much when I complained with my symptoms till recently.

Lynda x

Hi Kath

I have secondry Sjorgens, this was diagnosed at the same time as my RA, my eyes, throat and digestive system all suffer. I find for my eyes, eye drops (I tried about 3 different ones before finding 1 to suit) throughout the day and Lacrilube at night this is very oily but works well. I am still trying to find things to help with my throat and digestive system. I am on Hydroxy (200mg) I think this is supposed to work on both Sjorgens and RA. My RA Consultant was vague and with no real advise, I was hoping that there would be a wealth of advice from the clinic but what i have said here is about the extent of it.

You have my sympathy as i do know how it is.

Hankie

Hi Kath, I sympathise. Luckily my Sjorgrens doesn't flare as often as it did these days - although I've probably tempted fate by admitting this! I was recommended Blink Intensive eyedrops by an opthalmic surgeon and I've found them better for me that hypromellose. Luckily my GP is happy to prescribe them for me as they're not cheap to buy. I also have an artificial saliva spray. I can't use Beconase regularly as it tends to give me nose bleeds so I try to get by with steam inhalation and, when I get cracked dry skin inside my nose, I use a tiny amount of a bee balm to protect and moisturise.

Hello Kath,

I hope you have forgiven me for my previous huge "boo boo" and so you don't mind me posting an answer to your question...(I am still hugely embarrassed about that and very sorry).

I too have Secondary Sjogrens and know how horrible it can be. I have tried many different eye drops and find that the best ones for me are "Hylo Forte" . The eye doctor recommended them because they are quite a thick solution and, although I still find myself needing to use them probably 40+ times daily (more on a bad day) they are the best I have tried to date. I use Lacrilube at night and sometimes resort to that in the day too but because it's a cream it makes seeing very difficult which kind of defeats the object. Have you ever been offered "punctual plugs" or surgery to cauterise the tear ducts? Punctal plugs helped for me but fell out after a few days each time so I'm waiting for surgery now which apparently can be very effective.

In terms of the dry mouth, I didn't find Glandosane helped me much and I now use a cheap and cheerful Boots, Dry Mouth Spray (top tip - it's exactly the same stuff as the Boots Dry Mouth Mouthwash, and much cheaper if you buy bottles of the mouthwash and decant it into the small spray bottles). It doesn't help for long but is quick and easy to spray when needed and I find it a real help in the night and when out and about. I also use Biotene dry mouth toothpaste and mouthwash which have made a huge difference to the health of my mouth and teeth and I know that Biotene also make a "dry mouth gel" which didn't do much for me but I know of other people who find it helps.

Reading through the other replies I was also interested in people saying about Sjogrens affecting their digestion too. I have ongoing problems with my stomach and often wondered if it is Sjogrens related - although when I mentioned it to the gastroenterologist he didn't seem to take it on board and I have certainly never had any help or guidance from rheumatology on the Sjogrens in general, though I have had what is "assumed" to be Sjogrens for many years.

I know how miserable dry eyes and mouth can be Kath, so really hope you find something which helps.

Tillyx

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Many thanks everybody. It has been diagnosed by ophthalmologist (he did use a slit lamp) when I developed a hole in my cornea, as previously I'd been using Hypromellose with preservatives (prescribed by GP) and steroid eye ointment. Hospital gave me preservative free, which I've used since. Had 7 operation in 2 years to try and correct it, final one a corneal transplant. All failed. I now have a cataract on that eye, but I'd lost the sight anyway. They suggested an 8th op!! Remove all cornea, remove lens, drill holes around eye socket, vacuum whole area out, replace lens and replace cornea!! I asked what chance of success - less than 50% as I've already had one failed transplant - no thanks!!

Rheumy confirmed diagnosis because my nose, mouth, and all of digestive system is affected too. I was on Methotrexate injections for 5 years and didn't really notice much difference. Stopped having them because I had chemo earlier this year. Just taking 10mg Leflunomide now, along with Hypromellose preservative free, Glandosane - which is useless, so I buy Biotene, and Beconsase. I also wear sunglasses outside - even in the dark!!

It was diagnosed about 2-3 years after RA. Started with dry eyes, and gradually spread to other areas. I also have symptoms similar to IBS (that was fun while on chemo - not)!

Tilly, there's nothing to forgive...lol. But if there had been, you've more than redeemed yourself with your tips. I'll look into the Boots dry mouthwash and the Biotene toothpaste (although not too many of those left now) and as I'm over 60, I get free prescriptions so if things are too expensive I'm too much of a cheapskate to bother ;-)

Thanks again. xxx

Tillytop
Tillytop in reply to Hidden

Thanks so much Kath. I'm sorry you have said so many problems with your eyes - it sounds really bad. Just by way of info, In terms of meds for Sjogrens (both primary and secondary), the rheumatologist told me that there is a trial going on (Arthritis Research UK I think) to see whether Rituximab helps at all. I have been on Rituximab for a while now and I do think it helps my dry eyes and mouth to some extent. I hadn't realised that really until it started to wear off. Even with the Ritux I still need my eye drops and dry mouth spray but less so than otherwise I think.

Re the Boots dry mouthwash, fyi its full name is "Boots Expert Dental Dry Mouthwash" and my local Boots don't stock it so I order it and have it delivered to the store. I tend to order 6 or so bottles at once which, when decanted into the little spray bottles, lasts absolutely ages. I find it no help at all as a mouthwash, but as I said before, using it as a spray is, for me, a great instant help (tho not long lasting). I find it particularly helpful to use between mouthfuls of food to help me swallow cos it doesn't have a particularly strong taste (not "minty" or anything). The Biotene products are very expensive (I think the toothpaste is about £7 a tube!) but they are available on prescription if your GP is willing (which, thankfully, mine is).

I really do hope you find something which helps soon.

Tillyx

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Hidden in reply to Tillytop

Thanks Tilly. I have a sore spot on one side of my tongue where it catches a tooth. my tongue sometimes becomes inflamed!!

I will have to make an appointment with my rheumy as I'm now getting more painful joints. If she suggests Rituximab, I'll say yes please if not, I might suggest it. I don't really want to go back on Methotrexate again. Can you take it with Leflunomide? Mind you, she might take me off that - or double it!! Oh blimey, I must be tired, I'm rambling. xxxx

Tillytop
Tillytop in reply to Hidden

Hello again Kath,

Re Rituximab, I think it is often given alongside methotrexate but I have always had it without methotrexate. I'm not sure if it can be given alongside Leflunomide though. I think I'm right in saying that Rituximab is only usually prescribed after failure of one of the other biologic meds (and is thought to be more successful for those people with sero postive RA) but it would be good if the drug trial results in it being made available for people with Sjogrens. I think I made a mistake in my earlier post because I think the current trial just relates to primary Sjogrens but maybe if that proves successful, it will be used for secondary Sjogrens as well in the future.

I hope that you manage to get a rheum apt before too long Kath and that she is able to suggest something to help with both the joints and the Sjogrens.

Tillyx

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Hidden in reply to Tillytop

Thanks Tilly. I'm waiting until after Xmas to seek out an appointment. I read about Rituximab, and found that it needs to be infused fortnightly - is that right. If so, I'm not so keen on it as it would be like having chemo all over again - that was every 3 weeks. I'll wait and see. xx

Tillytop
Tillytop in reply to Hidden

Hello again Kath,

You are right that each "dose" of Rituximab consists of two infusions, a fortnight apart, but the timescale between "doses" is much longer - a minimum of 6 months and may be as long as 18 months depending on how well it works for you.

When you start Ritux, infusions one and two are given a fortnight apart. Then, at my hospital, infusions three and four are automatically given after six months (again, as a set of two infusions a fortnight apart). After that each set of two infusions is given only on an "as and when needed basis". So, now I am established on the drug, I typically go a year between "doses", which is great after being used to injecting Humira fortnightly.

Hope this info helps.

Tillyx

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Hidden in reply to Tillytop

Thank you Tilly, that sounds much better. Merry Christmas. xxx

Tillytop
Tillytop in reply to Hidden

You are most welcome. Merry Christmas to you too xxx

I too have Secondary Sjorgen but I also had retinal detachment twice in my left eye so thats cataracted and bcoz of that my left eye is drier than the right I use refresh tear drops Some days I put it 4 times a day my teeth is almost gone all this before 40 but my gp recently prescribed salivary stimulant

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