Sjorgens and reflux

[Thereisalight]

Hi there! Hope you are all keeping safe and gearing up for this unusual Christmas! It has been a while since I posted! Recently I am always very cold and feeling off. Dermatology (who discharged me as "I'm well" advised GP to do bloods. They have come back with again positive anti-ro antibody. Both for 52 and 60. I had never seen my original diagnostic results so looking into this I found an article that says that people with both 52 and 60 positive tests tended to have sjorgens as their primary disease. Initially since I presented with random rash I was seen by dermatology and docs thought it was scle. Ever since the diagnosis I have been battling with silent and lately a bit less silent reflux and indigestion. Turns out people with sjorgens tend to have GI issues and esp Reflux. Dermatologists always said that it is not related as common even without autoimmunity but still. I have no way to treat it and getting really down. I have given up on so many good things but still not better. Is there anyone with sjorgens here who has found things to help them? I feel people with normal reflux might find treatments that don't work for me as my root cause is sjorgens or CTD. Also who manages your care? Rheumatology, GP, Dermatology? I guess since other than this I have been not unwell, noone has really felt I needed to be seen. I am not well and weird things happen to me all the time but I am not visibly too unwell let's say. Anyways, any advice would be greatly appreciated!

[Spanielmadlady]

Hi I have sjorgens ( as well as lupus ) which was diagnosed by rheumatologist.I use hypomellose eye drops and I'm prescribed salivix pastels and lansoprazole. Many of us can relate to the "you dont look ill" quip so my advice to you is write everything down and go to your gp and request a referral to rheumatology xx

[Haired]

Hi, I also have Sjogrens and Lupus and initially went to Dermatologist with skin problems. She referred me to a Rheumatologist . He explained symptoms for Sjogrens can be very subtle and it can sometimes take years to be diagnosed

[Haired]

He also said biopsy might not show positive but you could still have Sjogrens, ( bad mouth ulcers dry sore eyes, fatigue, breathless, brain fog at times, lack of saliva. I also had very cold hands feet etc ( Raynards). I attend Dermatologist, Rheumatologist and sometimes GP. Luckily 2 Consultants work in same hospital and communicate re care.

Mepacrine really helped. As spanielmadlady said diary is a must to track symptoms. Hope this is helpful.

[MichelleHarris]

Hi Thereisalight, have you any Thyroid blood results TSH, T4 & T3. I have Sjogrens and was so shocked to find I have Hashimotos and other auto immunes but was told my blood tests were good for years and they wernt so I would check yourself x

[Spanielmadlady in reply to MichelleHarris]

I also have hashimoto's Michelle as well as b12 deficiency anaemia all of which are connected. I think a consultant is needed for thereisalight ....too complicated for gps x

[MichelleHarris in reply to Spanielmadlady]

Most consultants (not all) are useless too. I had expensive tests but no one checked my Thyroid for a few pence, in many years x

[bookish]

Hi, I would agree that GI issues are common and it can be due to Dysautonomia associated with Sjogrens (not Sjorgens - not trying to be picky, but you will find more info!). The videos from the recent Dysautonomia International Conference are currently available - have a look at sjogrensadvocate.com/dysaut.... The Sjogrens Advocate site is very useful.

Reflux etc are common anyway, especially so with the (often) low stomach acid that comes with autoimmunity. This can be due to parietal cell damage (happens with Pernicious Anaemia also Coeliac (and likely gluten sensitivity), Sjogrens, thyroiditis....) then you can't digest properly, get low vitamins and minerals, especially B12, and affects calcium balance.

I use diluted apple cider vinegar or lemon juice with meals to raise acidity, which helps a bit, but stopping gluten and lowering carbs plus eating more goods fats has helped quite a lot. Took time after ditching the gluten for me to start absorbing nutrients again, but I am. If you haven't already, getting a Coeliac check first is very important for any with Sjogrens, so don't stop eating grains until you've had one. Unless your damage is severe, it may well be negative anyway, even if you do have Coeliac, as sadly no tests are perfect (so don't happily think you are ok!) (Incidentally, don't take B12 supplements until properly checked for B12 deficiency or PA if any symptoms or family history, as it messes with ability to get results).

I don't have a Sjogrens diagnosis as my symptoms are neurological, which makes diagnosis harder. My rheum wasn't making any headway but referred me to neurology, who are, thank goodness. I have Small Fibre Neuropathy, which can be caused by Sjogrens, but also other things, so am working on that.

I think your comment about looking well is very telling, and it does create a problem. Many of us look quite well - I only really started to get help when I became emaciated (briefly!) and lost sensation in hands, feet, knees... A diary of the weird things that happen and that you feel would be a really good idea - correlate with food, time of month (hormones strongly autoimmune connected), weather changes, reactions to smells/chemicals etc if any - you get the idea. It may all start to build a better picture, especially if it is Dysautonomia/Small Fibre (also some links to Mast Cell Dysregulation).

Sorry for the epic and hope something is useful x

[frog]

Hi, sorry you are having these problems, it is so frustrating when you don’t exactly know the cause. I think it is easier to deal with when you know what you are dealing with. Like your recent replies, each person has individual conditions. I have Lupus sjogrens and raynaurds. I attended a Gerds clinic with a lot of other people to understand how to cope with heartburn and gerd (Burping too) It was ok, but nothing I didn’t know. I came away with ( the best you can do is use Gaviscon) so it is a bit like knocking your head against a brick wall.But to be positive, I use eye drops, for dry eyes, pastels for my mouth, and omprezole to protect my stomach and Gaviscon.

The people who attended the meeting all had varying conditions so I was surprised that one rule covered a large spectrum of conditions. I am sorry as I am sure this is not exactly helping you, but I hope you can get some help from the replies you receive.

I would defiantly ask to be referred to rheumatology, and a Gerd clinic. Take care and stay safe.

Sandy 😊

[Choccy8]

Hi, following on from Bookish's mention of low stomach acid, I find taking Betaine HCl as a food supplement helps when I get indigestion. (I have Lupus, not Sjogrens) Might be worth a try to see if it helps. the tablets I have are 324mg, with 5mg pepsin. I take one if I have indigestion/burping, seems to help, usually! Hope you find some help soon.

🙂

[Thereisalight]

Thank you all. Will try to respond to all of you individually but so you

In short, my symptoms are:

Often have mouth ulcers although they often come after stomach aches etc.

I cant wear contact lenses for long as eyes too sensitive bit don't appear to be dry. Seem to have decent amount of saliva hence sjorgens was never something I considered initially despite being aware it could be.

I always have low blood pressure and I am quite thin so I generally fee cold and hands and feet are always cold but not to raynauds standards.

What I do find recently is that when I get reasonably cold my skin goes funny and if I touch it or put pressure on it, like sitting down, then my buttocks skin feels like it is briefly sitting on a cactus! It is some random painful tingling that does not last long but is super weird.

Typing on my phone often results on my hands and arms going a bit numb or sleep. But that might be more posture.

I have the occasional not too troublesome chilblains on my feet.

I am a mum of two active boys, work 3 days with active brain at night so I don't sleep enough. I am tired but not fatigued really.

My reflux symptoms is excessive burping after most foods, sometimes I do feel things coming back up. My throat is always making noises. Think I get gas reflux nut not sure if it acid The, pepsin or non acidic stuff. Had a biopsy 3 years ago and it was fine. Had all other tests. All normal. Waiting for new endoscopy now. The main issue is irritated throat with chronic cough especially eating. Like there is a prickle on my throat and bam coughing fit. That brings mucous and leaves messed up for a hour then takes a few days to improve a bit. Happens often with dry or hot foods . Started with wet foamy mucous first but dropping dairy seemed to calm that down. If I have dairy again in big quantities I suffer. But without dairy I still cough but it is more of a prickly cough.

I tried a digestive enzymes a couple of weeks ago and that made it all much much worse. I do take gaviscon advance if I need it but never found much improvement. I have read about betanin hcl so might try. It is hard as I can't tell if it is low acid or too much acid what I have or if it is a vagus nerve issue or bacterial overgrowth (tested positive once but after treatment i started with the coughing!)

I have started a b complex vitamin now just to see where I go. Maybe I should ask gp to test me.... they are just not keen on testing stuff!

I have had celiac test and biopsy. Always negative. Might still have sensitivity but I love bread and pasta so find it hard to do an elimination diet! It is my only source of joy when eating as my diet is already so bland and boring!

I have seen rheumatology before for some joint pain which I think it is due to posture and sitting down a lot at work . He saw enlarged nodes but did not seem concerned.

Have asked for tests before re vitamins etc but they just tend to do normal stuff and say i am ok. Every now and then my bloods show I am low in neutrophils but somehow after some time it resves itself!

I think hormones def affect me. There is a day before period comes where I just can't get warm. Happens every month.

I have seen tons of ENTs, Gastros, Dermatologists etc. I wish one person could take ownership of my care and do a more wholesome assessment by coordinating all sorts of different tests etc to get to the bottom of it.

I am an anxious person esp after kids so these not knowing, these symptoms don't help.

Sjorgens and lupus scare me no end but now I just want to at least have a normal relationship with food. It such a ig part of your life and socialising. I come from Spain and food over there is everything.!

I

[bookish]

You can always do your own testing, if doctors won't, but try to get copies of what you've had done already to give you some idea of where things have been, especially B12 levels. B12 deficiency is complicated and often missed. I'm afraid that the one person who can really take ownership of your care is you, as you have the most to gain (and lose). That doesn't mean that there is not help and support available, but rare to find a single specialist to cover all aspects, they are simply not trained that way. With neurological symptoms, dryness can come later (or not at all). It can be quality of tear film or saliva that is affected, not necessarily noticeable lack, that's why you need good diagnosis. Rheumatology will get reports re. teeth and eyes to help with that. If Rheum isn't helpful try Neuro, especially given odd skin sensations and numbness.

I understand that food is important to you but I worry about bread and pasta being your only source of joy. Why is your diet already bland and boring and what is 'normal' for a relationship with food. I adored bread and pasta, was addicted even, but I'd rather be well, and giving up was the single biggest revelation to me. I eat no grains at all and it is perfectly ok. I have a vast range of vegetables plus fruit, nuts, fish to go at. Unfortunately the food and lifestyle are intimately wrapped up with the Sjogrens/Lupus/Any other autoimmune or inflammatory condition you care to name, and although not all agree about the need to at least try an elimination and reintroduction diet, a few say it is essential, and it proved so for me personally, which is all I can say really. Best wishes

[Hidden]

I don’t think having Sjogrens/SS necessarily makes reflux more severe but I think it’s much harder often to get it properly controlled. This is probably because we don’t have enough good quality saliva to wash the acid reflux back down with - but there are also neurological factors with SS for some which can cause gastroparesis and other issues that meds with the oesophageal tract.

Never heard of 52 and 60 - do you mean antibodies Ro and La? Sometimes these are referred to (especially in US) as anti SSA and SSB. If you have these synptomx with both antibodies then I’d imagine you’d meet the diagnosed criteria regardless. I have SS and dry eyes are just annoying - my GI issues are much worse from top to tail. It turns out I have scleroderma and Sjogrens overlap but my rheumy is still saying that she sees many of my symptoms amd conditions in other SS patients.

I think you just need a diagnosis you trust and then your anxiety will ease a lot. I felt my anxiety ease up when I saw my diagnosis list written down in black and white in 2 different clinical letters this week, Overlap CTD SS with systemic sclerosis.

It’s far easier to deal with this stuff if we have a name to give it.

Sadly SS is the least well understood rheumatic autoimmune disease. I read more nonsense written and spoken about it by rheumatolgists and others from patient communities - saying it’s just dry eyes etc than I can begin to comprehend?! Only my colorectal surgeon, a lovely Greek fellow, pronounces it and understood its effects on the GI tract perfectly. If he can then why is it so darn hard for Rheumatologists to?