Hi all I haven't posted in a while but i do read all the posts I'm just wondering if anyone has Sjorens disease
I-have both rheumatoid/osteo arthritis and for years i've been plagued with severe dry eyes and mouth ulcers I was referred to hospital and they say it was methotrexate that was causing this They have lowered my injections from 25 mg to 20 mg also put on lanzoporole I also have had a multiple of eye drops
I still get the ulcers but also I've have a rash which appears on my arms ( from my wrist to my elbows ) from time to time Its really hot to touch Looks like a burn I have taken photos annd showed them to my Rheumatologist but he wasn't sure what it was I also have a dry cough and constantly dry mouth
I happened to come across an article about Ssjorens yesterday and all the things i've listed point to this
I'm sorry for the long post but just wondering if anyone else has these conditions and would be grateful for any knowledge regarding this
Thank you
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Mumcon
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Maybe not useful, but I got mouth ulcers at the start of my RA. My Rheumatologist upped my folic to 6 days and they went. Had oral issues for a while when first diagnosed, but has been settled for years now.
I used to get dry eyes, but mine was down to central heating and not enough water 🙄..
I have been on 6 folic acid a few years now but still suffer I had bloods done last year to see if I had Lupus and the result was positive but Rheumatologist didn’t seem to bothered and told me not to worry I was also put on hydroxlinr years back but it didn’t agree with me I don’t see Rheumatologist until the end of year but if my symptoms get worse I’ll call them
I was investigated for sjorgens several year ago. I suffer dreadfully with dry mouth and eyes. I had an ultrasound of the salivary glands, which didn’t show sjorgens. He pit it down to the number of meds I take, which can all cause dry mouth. I use salivary gel at bedtime, as well as hylo night gel for my eyes.
Hi! I was diagnosed with moderate to severe Primary Sjorgens about three weeks ago. Dry eyes , joint pain, dry nose, ears, skin etc. I was prescribed Celluvisc eye drops which are great. I use them before bed so my eyes aren't sandpaper in the morning. I've been put on hydrochloroquine and I've found sugarary drinks make it so much worse.
I have Rheumatoid and developed Sjogren's a couple of years later. The Sjogren's didn't show markers in my blood so it was a couple of years before they diagnosed me from the third ultrasound of my saliva glands, when I developed lymph nodes in that area. I was offered Hydroxychloroquine but had previously taken it for Rheumatoid and it had greatly upset my stomache. My rheumy will not discuss Sjogren's or Fibromyalgia. I take help from where ever I can. My GP has given me lots of things to try and I've had help from the optician and dentist. I now use Biotene dry mouth gel (prescribed by my GP but I also buy extra), Xylimelts which I buy myself and have been a life saver (these little mints have saved my carreer and enabled me to continue working), I've tried all the different eye drops, creams and gels and have ended up using a cheap eyedrops and Blephasol. My dentist prescribed Duraphat 5000 toothpaste which has helped save my teeth and prevent further decay but also plays havoc with my Lichen's plantus. I try and read posts for Sjogren's and try the different recomendations from other people, knowing that what suites one person will not suite another but you never know until you try.
I also use Xylimelts , a life saver.wouldn’t be able to sleep without it. I also use pastels and spray during the day, and duraphat toothpaste from my dentist. And Viscotears gel for my eyes. I have RA and Sjogrens .
I have suspected Sjogrens and am waiting for a lip biopsy which is the only reliable way to diagnose. Main sympton was exceptionally dry mouth, so dry that on waking the sensation was that if I tried to open my mouth my lips would disintegrate. I was on methotrexate at the time and a high dose of prednisolone. I have since changed to a reduced prednisolone and mycophenalate and the dry mouth condition has noticeably improved but not gone entirely. I know so many people with suspected Sjogrens at the minute and am wondering what has caused it......a covid legacy?
While I don't have Sjogrens, after getting severe covid early on during the pandemic, I started a rapid weight loss period over 6 months. I lost 40 pounds and am a small framed woman. I do believe COVID had a hand in all of these new medical issues. In the end and three years later, I have been diagnoses with five autoimmune conditions. I too am on MTX injections weekly. At the 25 mgs level my liver enzymes spiked so we had to come down to 15 mgs. Prednisone is there for flares as needed. The real win was the add of LDN. There is a LDN site here on HU as well. This was a huge game changer for me on pain and inflammation. I am allergic to all pain meds except Tylenol.....so anything that can reduce inflammation is a bonus. Attaching an article from the NIH on LDN and what it means and does. Little to no interactions or side effects. Hugely improved my colitis and something called relapsing polychondritis symptoms. LDN is getting a lot more play in the US. The UK does a great job with the research and doctors have had it in their tool kit for awhile in the UK. Pharma can't make money off of LDN so it has to be made at a custom pharmacy....but I don't mind as it changed my whole world!
Hi Mumcon. I’ve had RA since my 20’s. Plus i have chronic eye conditions which came with the RA. I’ve been suffering with severe dry eyes & dry mouth for roughly the last 6 yrs. I was tested 2/3 times for Sjogren’s. Always been told. No. It’s not that. I’m not being nosy. But are you anywhere ‘near’ the menopause? Pre/post? Hormone changes have made my dryness worse. I wake up half choking some nights. Really terrifying. I always have water next to my bed. I’ve tried loads of things. I’m thinking of trying the HRT patch. I don’t want the tablets. I already have high blood pressure. I’m on Losartan. I have read meds like that can cause dry mouth too. I know how awful it is. You just have to keep trying to keep things moist. X
Hi No I’m way past the menopause I’m 72 but I do still get the terrible sweats which I suffered when I was menopausal I blame medication, although I can’t work out which one is causing it X
I have several A.I. conditions as well as Sjogrens. I suffer terrible night sweats and am also past the menopause. I was told that when the disease (SS) is in an 'active' phase the sweats are worse but to be on the safe side your bloods should also be checked out for MALT as the sweats can also be a symptom of that. Having Sjogrens means you are at slightly higher risk (but only a small one so don't panic)of developing this. Your rheumatologist should be aware of all this.
I have very dry eyes and use Viscotears; Celluvisc, Hylo Night gel; Ikervis and Clinitas. and when my eyes get inflamed the eye dept at the hospital prescribes Dexamethasone steroid drops. For dry mouth I use Biotene gel. I didn't like the Xylimelts but many people swear by them. As other people have commented, you can get Duraphat toothpaste on prescription from your dentist.
Hi Marionfromhappydays. (Good name). Happy Days was such a joke. Couldn’t they tell Fonzy was about 50??? 🤣 I’ve been having a really crap time with my body temp. I’m finding it hard to control it. I’m really ‘foggy’ when i wake up. I’ve been having the most awful ‘sweats’. I feel i’ve had a cold & ear infections. Plus it’s defo to do with the menop. So i’ve just thought. Sod it. Now whenever i’m feeling low & menopausal i get a big bowl of vanilla ice cream & sit infront of my fan. It’s fantastic. But my fave icecream is salted caramel cornettos. When i first tried them. I thought this is the best thing i’ve ever put in my mouth!!!! X
Hey ATVWMF. I do have a very naughty sense of humour. Sometimes i shock people. I can’t help it. I don’t always think before i open my mouth!!! So sorry you fell over. It can be a real shock. Our joint problems can make it worse too. This is where i would treat myself. A big fat eclair. Or some lovely Brazilian Coffee cake, with a lovely coffee/tea. There’s nothing like tea & cake. They should give it free on the NHS. (I’m half Irish). Make it an Irish coffee. A wee drop of whisky. (Just for the shock of falling over you understand!) Hope your knee feels better soon. There’s nothing like a good laugh when you’re feeling low. My mum was from Belfast. She came to London in 1954. She died 6 yrs ago. We used to laugh alot together. She’d probably say get Father Ted on & get Mrs Doyle to make you a wee cup o tea! X
I share your naughty sense of humour and often come out with things that are a bit 'near the bone' as my hubby would say but lived too long to give a flying fig!
Told hubby he can be Mrs Doyle today and to get the wee cup o tea on!
I love a grand sense of humour. They do say it’s the best medicine! (That & a load of painkillers & steroids!) As your hubby Mrs Doyle will say. Ah go on go on go on. GO ON!!!!! Enjoy being waited on. Your hubby sounds lovely. X
Yes, he is and long suffering but don't tell him I said that or he will get get a swollen head. Mind I don't dish out sympathy to him...can't be doing that, or he'll go all soft LOL
It means alot having a kind, patient person to rely on. Especially when you’re in pain. I have a partner. But we don’t live together! We’ve been in a relationship for 17yrs! I prefer living alone. (I live with a mad, furry hamster called Sidney). He makes me laugh when i’m low. My partner’s good too. If i’m having a bad flare up. He stays over. My mum was fantastic. She was a nurse & i developed RA & Iritis when i was 21. I was literally bedridden. She was fantastic. RA can be an emotional disease. So having someone close you can rely on is so inportant.
It does mean a lot to have someone dependable and caring but there are times he drives me bonkers!!!!!! and a furry hamster would be preferable but I suppose in any relationship that is par for the course. I suppose I drive him bonkers too and it must be frustrating for him to be constantly told I can't do this, or that because of the fatigue. It impacts on his life as well. As I type he is hanging the washing on the line and getting some lunch pulled together. He is a brick really but it doesn't do to give them too much praise. It goes to their head, you see....
You must miss your mum awfully, especially as she provided such great support and care when you were young and had that to cope with all that. R.A. can be an insidious disease, much like Sjogrens in that respect but even worse.
I lost my dad when I was in my early 20s and my mum fell apart and I looked after her. She died in Nov 2020 aged 96. The care my hubby and I provided meant she was still in her own flat until a couple of weeks before she died and really she just gave up...so sad!
My dad used to say never fear death and if there is anything afterwards it can't be a worse Hell than here. As I get older I think he was right.
Hi ATVMWF. Your mum was so lucky to have you & your husband. 96 is a fantastic age. I was 17 when i lost my lovely dad. He was a journalist for the BBC. He would do shift work. So we didn’t see him regularly every day. But one day he left for work & we never saw him again. 1 day after not hearing from him my mum came home early & said she was going to the Police. She went to report him missing. The policeman she spoke to was horrible. Patronising, arrogant. Wouldn’t take down his details. His car no plate. Made out it was just a domestic. 5 days later a police car pulled up outside our house. Our road was very safe. The police never came to our road. So my poor mum nervously let him in. I was upstairs getting ready for college. I heard her sounding emotional. She hugged me & said my dad had been found dead in Epping Forest. He’d had a massive heart attack. (He was 52. Which is my age now!) But because of that horrible policeman. My dad had been left in the morgue for 5 days!!! We were very upset at that. My mum made an official complaint. This all happened in 1989!! So long ago. But i remember it like it was yesterday. My brother was 24, was going to Uni. I became really clingy towards my mum. She was fantastic. She died 6 yrs ago at 82. The evil c word. I tried my best to help. My brother’s an auctioneer for Christie’s, has triplets. (Boys) & lives in the States. I nearly had a breakdown when my mum died. But my brother was brilliant. Came over & slept on a mattress next to my mum’s hospital bed. He was amazing. Losing her & my dad was just the worst thing ever. Your mum must have suffered when she lost your dad. (You too). It really affects your whole life losing a loved one at such a young age.
That is really, really awful. How traumatic for you, your mum and your brother. That Policeman should have disciplined but it just shows the misogyny that is still so prevalent in the police force, even today. Your mum must have been a strong woman. Many of her generation were and even though my mum did fall to bits she did pick up the pieces, she became 'clingy' towards me as I am an only one. I resented it a bit at the time because, well you do when you are that age, I suppose. We did butt heads quite a bit.
I'm glad your brother was so supportive when your mum was ill. I found it difficult as I had no one to lean on. I got married and was going through a messy divorce and trying to support my mum-it was not a great time! I often think the stress contributed to the A.I. conditions bit also think genes play a massive part in whether you are destined to get them. Luck of the draw.
One thing we are is strong and I am sure you have inherited your sense of humour and resilience from your mum. We don't just get the bad bits, we also get all their good traits as well.
Hey. Lovely reply. I totally agree with you about everything. My mum was a strong, independant woman. She lived alone after i left the nest. She loved living alone. I got married at 21. Then 6 months later. My RA developed. So my husband became my carer. But i would stay at my mum’s to give him a rest too!! My RA was a different kind. My husband was the only man i’d been ‘intimate’ with. I actually caught an STI from him. That’s how my RA started. Very, very sad that the first time i was with a man, i got so ill. I had the most awful pain in my right big toe, my left shoulder & my right eye had the worst attack of conjunctivitis. My mum took me to a&e. They kept me in for 5 days for tests. Then the consultant sat on my bed & said we know what you’ve got young lady. You have ARTHRITIS!!! My mum’s face dropped. At that time i only had it in a few joints. I was begging to go home. The Sister knew i wasn’t up to it. But they discharged me. Then literally the next day. The inflammation spread to every single joint. I felt like i had cement inside my whole body. I was on so many drugs. My husband had to help me to the loo. I was obviously so upset. My mum was too. My husband had Chlymidia. I’ve read alot about it over the yrs. it can stay in the system for yrs. no symptoms. But it can make it harder to get pregnant. I feel people should educate younger people about the dangers of STI’s. I sometimes feel like going to colleges & schools. Warning of these things.
Thank God there’s great treatment now for our conditions. As i’m always saying. I’m so grateful for my 6 weekly infusion of Infliximab. Plus when i have Iritis & when i have a bad flare up of Glaucoma i can have great eye drops from Moorfields. Lovely staff. I’m so grateful to be living in the UK. My brother’s always saying i’m lucky to live where i’m living. He’s realised that since he moved to the States!!!!
Bliddy H*ll you have been through the mill...but you have also come out the other side. RESPECT!
Men can often have an STI with no symptom and then pass it onto their unsuspecting partner. Did the info in the 80s about wearing condoms not get through?!?!?!
That possibly triggered your R.A. which was lying dormant . Doctors do suspect that having a virus can trigger A.I. diseases. I have seen research papers that incriminate the Epstein Barr and the Coxsackie B virus as a trigger, along with stress and environmental conditions. I think medical science has a lot to discover about the causes and treatment of the various A.I. conditions. Just wish they would get a jiggle on finding some effective treatment for Sjogrens.
Your mum will have known that you were not well enough to be discharged because of her nursing background. It was good she was there to assist you.
Yes, we lose the NHS at our peril. It's not perfect by any means but the alternative for us with chronic conditions doesn't bear thinking about.
If you are having a down day and fancy having a chat over an ice cream just DM me.
Hey. I’ve really enjoyed your emails. I’ll defo take u up on your ‘invite’. Sorry you have Sjogren’s. I was tested twice. They said it was negative. (I’m so grateful). Take care. Hope to ‘mail’ soon. X
Sounds like a plan!! I can’t live without my fan either. I want to marry it!! Hot bloody flushes & it’s quite humid. A bowl of ice cream infront of the fan is bliss. Enjoy your chocie x
Hi Mumcon, sorry to hear how you are feeling but in a selfish way, I am relieved to know that I am not alone. I could have written your post as I also experience the same symptoms. My mouth is so dry that, on waking, my tongue is stuck to the roof of my mouth. I've suffered with mouth ulcers and cold sores for years but becoming more frequent. I have a rash on my chest which resembles prickly heat,. Eye drops only give short term relief. I have collagenous colitis, osteoarthritis, muscle aches and weakness, emphysemic changes in my lungs, heart murmur and fatigue. Family history of RA . I'm still having lots of tests so no official diagnosis of anything yet. Rheumatologist says likely to be several autoimmune diseases, including Sjorgens, RA, etc. I'm going to follow other posters with interest as I'm hoping I can soon get some medication to help symptoms. Currently, I dont take anything.
Omg your symptoms and hospital advice mirrors mine! For years I also had the ulcers,dry mouth, itchy rash which I thought was prickly heat and in the same place as you. My dentist told me to mention sjoegrens to my Rheumatologist who confirmed it’s sjoegrens without any tests. My gp prescribes ADDITIVE FREE eyedrops as I found the others irritated my eyes & duraphat toothoaste as it’s sls free. I buy Xylimelts from Amazon which help me sleep without drinking all night (which disturbs my sleep). These pastilles stick to your gum or tooth and keep your mouth moist all night. I use them during the day if I will need to talk a lot as thst dries my mouth too. I only use one at a time and that works for me. For my eyes I buy blephasol to clean the lids as I’ve developed blepharitis off the back of the sjoegrens. When I first got it I struggled to eat lots of food but I’ve adapted over the years and always have a sip of something before or after biscuits or crisps or I can’t swallow them; I limit these though as they can cause trauma ulcers in my mouth due to the dryness. I hope some of this helps you to navigate your journey. X
Thanks for your reply and I’m glad you’re symptoms have been confirmed Like you I’ve had these for years so I will be telling my Rheumatologist I’ll buy the pastilles you mentioned also toothpaste if I can It’s just so annoying that we have to deal with this over and above the R/A C
Stay positive and you’ll develop strategies to cope with it. Don’t let it beat ya! I love a coffee mid morning but it dries my mouth out so much however, I refuse to give it up 😀 and won’t let it dictate everything in my life. Good luck, we are all with you x
I don't know if I have Sjögren's or what's going on really, as I'm still trying to figure it out. I worked out by myself a couple of years ago that toothpastes with sodium lauryl sulfate (SLS) were causing irritation in my mouth. I've found some toothpastes by Sensodyne that don't have that in are much better for me. I do have geographic tongue and oral allergy to symptoms to some foods too, so don't know if that's more of a factor for me personally.
For dry mouth I keep some of this Boots mouthwash boots.com/boots-expert-dry-... in a little spray bottle by the side of my bed in case I need it. And I need to drink water often, otherwise everything dries up and then I can't stop coughing/choking.
There is something called multiple autoimmune syndrome. they have found that people tend to have a selection of autoimmune conditions and have classified them. ncbi.nlm.nih.gov/pmc/articl...
This is very, very interesting as I have several A.I. conditions, one of which is Vitiligo. I have never, ever had this mentioned to me in the 52 years I have had it, or the other conditions I have developed along the way. I wonder just how many medical professionals are actually aware of MAS? ......very few, I suspect.
It is fairly well accepted in the literature that if someone has one autoimmune condition they are more likely to have another. And it also seems to be fairly well researched. It seems to be the front line rheumatologists that don't think about it. It could be because other silos treat other autoimmune conditions and rheumatologies sort of only do joints. So diabetes would be endocrinologists, and occasionally thyroid autoimmune conditions too, but often those, especially women, never get that far, the GPs just hand out thyroxine like sweeties.
When I started on the methotrexate for my PsA the first thing I noticed was that my thryroid gland started working again! Sadly it didn't last for long as I had to stop the MTX.
I knew that it was accepted that if you were unlucky enough to have one A.I. condition then you generally didn't just have one and they also tended to run in families, I was just surprised that Vitiligo, which in my case was dismissed as a benign and untreatable condition when diagnosed, was in this paper seen as a precursor to other A.I. conditions waiting in the wings. I have lost count of how many 'consultants' I have seen over the years for various conditions who have commented on my extensive Vitiligo with the usual fleeting comment '...you have bad Vitiligo etc etc...' and then moved on. The medical profession in my experience never joins the dots up and never seeks answers.
As you say, they dole out Thyroxine like sweeties but you try and get anything other than Levo if it doesn't solve the problem-impossible! I can't help but think that if these issues were not predominantly suffered by women would the treatment be better?
Very, very interesting that your thyroid gland kicked back into action when you were taking MTX and shame you had to stop taking it, although, I have heard it is hard to tolerate. I had to stop hydroxy as it was interfering with my migraine meds. have they offered an alternative, such as, Rituximab?
I think you are right, if some of these issues weren't predominantly suffered by women they might have developed better treatments. Have you read Caroline Criado Perez's book Invisible Women? The world would be a much better and safer place if women who make up 50% of the population were taken into consideration.
And thank you, sadly no I haven't been offered an alternative. Apparently I don't have enough joints involved. She just presses a few joints in my fingers, never looks at my feet or my hips and back, and says I don't qualify for anything else. So I am just taking paracetamol and being resigned to becoming just as disabled by the condition as my grandparents were in the days before these drugs.
No, haven't read it but just ordered from Amazon on your recommendation-thanks.
Next consultation I would be making a big thing about my feet, hips and back and directly asking for Rituximab, or similar and making a direct point about your grandparents and how crippled they were and saying what is the point of medical advancements if they don't alleviate conditions that previous generations suffered from.
oops sorry. Can’t recommend xylimelts enough they’ve changed my life. In fact my daughter is a dental hygienist and now recommends them to her patients with sjoegrens ……. Apparently there’s lots of us out there these days
Hi , I have this and R/A osteoarthritis, lots of other problems, I get red blotches on my arms which I put down to steroids , however I’m not sure if it could be a vitam deficiency, just get it checked
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Tried lots of oral drugs, where do i go now?
New member awaiting confirmed diagnoses of RA
Severe Reaction to Hydroxychloroquine
Side effects of medication
