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Silent reflux?

Silent reflux?

So, after my recent posts about sudden & severe pains in my chest/upper abdomen and the possibility of Sjogren's etc, I requested my hospital notes from when I saw the ENT early on in my lupus journey.

I'd seen a private rheumy in November 2013 and then NHS in March 2014. Both said SCLE. We know know that was wrong and a lot more of my symptoms are clicking into place.

With my discussions with TT etc re silent reflux and it ringing bells me with me, I wanted to check out the notes.

My GP sent me to see the ENT as I had complained of a very sore throat, for months and months. It felt red raw. Like I had swallowed glass.

I saw the said ENT before his clinic early that morning. He had a nurse in the room, got a camera up my nose and asked me to swallow. I vaguely remember a conversation about silent reflux or lupus inflammation being to blame. He would write to my GP etc.

I knew nothing about silent reflux and was confused, I'd never suffered indigestion, even when pregnant. It wasn't something I understood and obviously at that point, I didn't know what it all meant re my lupus and possible sjogren's.

Well, the hospital notes have arrived, he confirms he exam and says nothing sinister and I'm a non-smoker.

He tells GP that I can try Lansoprazole or Omeprazole. He says he discussed this me with. I have no idea whether he did or didn't. BUT I do not remember. any GP ever mentioning this to me ever again????

Another thing to annoy me about the lack of care co-ordination with this illness.

The letter to my GP is May 2014.

I am now realising the consequences of this in 2018.

I had another episode of sudden & severe onset pain in my upper abdomen/ just under ribs, right in the middle, a week after the last. I was at home and my husband saw it. It scared him. I couldn't do anything and was clutching my chest. Luckily it was very brief that time, compared to 2.5 hours for the first attack.

Today, I have had sudden onset sever abdominal pain but lower down. Again I couldn't function. I couldn't eat my evening meal. Far too uncomfortable. I have burped a few times and can taste acidy stuff.

I have taken ranatadine 75mg now and again, but admit not every day. Due to the hydroxy I have been trying to take it mid day.

Is all this related? Each day brings new questions and no answers!

I have a GP appointment on Tuesday and will be raising this.

I have also been looking up GERD / Silent Reflux and IBS etc.

I have suffered diahorrea and passed mucus before. I get abdo pain. Always suspected IBS type stuff, caused by lupus.

Anyway, lots to think about.

On the plus side, its the summer holidays and this past week we've had relatives staying, so although a very busy, tiring week for me, we've had lots of fun, used my new UV beach tent and it's taken my mind off all the usual stuff.

Hope you are all doing well.

Wendy xxx

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Hi Wendy

Thank you for your lovely reply to my post. I thought I'd reply to yours and combine the two. Glad your ENT appt went well and to answer your question it is possible all your latest symptoms are connected including your dry cough. Sorry you've had further pain in stomach and chest. The intensity is frightening isn't it?. It could well be your stomach and years of noprotection from effects of steroids or inflammation!. Thank goodness your getting a stomach protector drug now!. Your GP will probably say on Tuesday that if symptoms don't improve then an endoscopy would be good to check which it might be!. Hope your appt goes well. Keep us posted.

Do you have IBS too?. I was disappointed at first as had hoped for better treatment for colitis as had been symptomatic!. It's hard when test results don't reflect our suffering!.I did feel a bit foolish as consultant laughed at my constipation!. Feel better about it now!. I've come down on the steroids from 25 mg about 3 years ago . Done it ever so slowly which I find better!.

Glad the school hols are going well and you've got extra help from hubby!. Makes such a difference!. Keep us posted how Tuesday goes. Good luck X

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Hello Misty.

Yes, this jumble of symptoms! Lupus. Sjogren's? Or silent reflux? Inflammation? Who knows. But it is looking more and more likely to all be connected. I have realised that my throat is very sore, again. it does happen when my lupus is playing up. Never really totally goes away.

I added the Ranitidine in myself, as recommended by TT.

The ENT appointment was 4 years ago and those issues never addressed properly. I had no idea of the potential significance then.

I have just posted about my GP appt today and we got swept up in the referral to St George's and then the amitriptyline etc and so never really got to this issue. I told her about my pain in my chest and abdo and that the severity caused me to consider calling an ambulance but it got no further than that. I didn't even tell her I was self medicating with Ranitidine.

It's such a blinkin mess and i am feeling proper sorry for myself this afternoon.

I haven't had to take any pain relief whilst on my steroids and so this proves my headaches are inflammation at least??

You are doing so well with your steroids.

I have luckily never been on them long term. Since 2013, only 7 very short courses and never more then 20mg and tapering over 5 weeks. So I am hoping that my possible stomach issues are not steroids but general inflammation.

Anyway, why did the Consultant laugh at your constipation?

I am so glad hubby is around now for another few days and that it'll be a distraction from all of this.

How are you doing today?

Wendy xx

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Hi Wendy

I'm so sorry about your health situation. I can't believe what your having to go thru. The stress is immense. It's good your steroids have just been short courses so not causing your stomach problems. I too take ranitidine as changed it due to the ppi's causing bone loss!. I've found it just as effective so hopefully it will help you. I do agree with you it gets to the stage it's hard to know what's doing what!.

I've just googled pain predominant IBS and it really is a known subset of the condition. It does include chest pain and abdo pain which is usually lower down. Mine is but yours I think is upper abdo?.

My consultant Gastro laughed because he never thought he'd be hearing how my bowel has suddenly changed because a few years ago I was seriously ill in hospital with persistent diorrhea!. They thought caused by my immuno- suppressives which I had to come off and Lansoprazole!. This is why I just take steroids for my CTD and colitis!. Luckily I haven't had any abdo pain since my appt. it did say how severe it can be then go away for a time completely and return. Stress is a known trigger!. I'm coping with some aches and tiredness on 7.5 mg but got to keep refucing!. I'm glad dr k doesn't want you refucing till you've had all your tests. He's a great chap. TAKE CAREX

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Good morning Wendy, I know all about GORD! I have an autoimmune disease that involves the mucous membranes

I was taking Methotrexate some years ago & found that I couldn't swallow & it felt as though I was swallowing razor blades. I assumed that I had lesions in my throat because of the pain. My wonderful Consultant referred me to an ENT Consultant, I saw his Registrar, whom I nicknamed Dr Happy!

Dr Happy performed a nasal endoscopy, which I found fascinating while I watched the monitor. I could see that I had no lesions. It was interesting though, that he didn't mention Sjögren's. He did however tell me about GORD & appeared to delight in telling me all the food & drink that I shouldn't have, hence 'Dr Happy'.

He put me on Lansoprazole for 3 months & Gaviscon Advance 4 times a day.

The foods he told me to avoid: tomatoes, oranges, chocolate, caffeine, alcohol & other things. And not to eat after 7pm.

Whatever I might have thought, he was right but I have subsequently done a lot of research & will not take PPIs - like Lansoprazole. Ranitidine is safer & doesn't deplete your body of calcium like the PPIs.

I saw an article on the BBC website about opera singers protecting their voices & it was similar to what Dr Happy said

bbc.co.uk/news/magazine-331...

I see the article was 2015, I guess I must have seen the ENT guys then.

I am prescribed Ranitidine 150mg twice a day, I don't always take it & seldom twice a day. I tend to take it in the middle of the night when I wake up because I can't take it close to when I take my Pred. I always use an interactions checker

drugs.com/drug_interactions...

One thing I have learned from my various diseases, is that I have to know everything about everything! I am fortunate that I have some excellent Consultants & very supportive GPs but, it has been a huge learning curve.

I am glad you are enjoying your visitors.

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Hello

Thank you very much for your very helpful reply.

I didn't know about the foods etc to avoid.

I have to say that as I have been on Mepacrine since last June, I have not drank any alcohol at all. I drink 2 mugs of normal coffee first thing in the morning and then it's decaf all the way. Like I said I do not smoke either. BUT one of my life's pleasures that is left is chocolate and I try to keep to dark chocolate. Not sure I could face giving that up too! I also eat quite a lot of food that is tomato based. Which is good for you generally and full of anti-oxidants. Goodness, this stuff is so miserable!!!! We don't have much left to enjoy do we. I can see why you called him Dr Happy. Groan.

I do actively try not to eat more than 5 portions of fruit or veg a day because it effects my bowel and not too much high fibre food too.

I am taking the Ranitidine as recommended by Twitchy and I ahve seen my GP today (just posted) but didn't get around to addressing these issues with her. Too many other more important things going on. So it will roll onto the list for next time, as is generally the case, too much to discuss with GP and only so much time.

I wish i could say the same about my team of doctors. Local Rheumy told me she did not need to see me again. I can be monitored by GP alone. I pay privately to see a lupus doctor in London. I've just posted.

Thank you so much for being so helpful and supportive.

Wendy x

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Hi

Silent reflux is notoriously difficult to treat. I had what I thought was heart problems for months due to the pain in my chest, I developed a dry cough for 6plus months from inhaling minuscule amounts of stomach contents at night and waking with horrendous sore throat. I battled with horrendous shoulder and neck pain and I ended up in A&e twice for the chest pain and was told it was due to reflux. Standard test came back normal only after i insisted on them testing for acidic and non acidic reflux was I diagnosed. I have a week valve and ended up having surgery. Suppose my point being there is no way I thought all of my symptoms could be related to reflux but since the op I’m at least 80% better so obviously was. In my opinion though if you aren’t refluxing pure acid the doctors don’t want to know, it’s only when I insisted on the more in depth impedance test was it picked up. Lots of luck

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Thank you for your helpful reply and tips. Always so much more knowledge here than anywhere else!

Wendy

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Colloidal silver helps with most things and is particularly good for tthroat problems. A teaspoon in the morning and evening held under the tongue and then swallowed should suffice. Blessings.

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Thank you.

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Hi Wendy , i just had an ENT follow up last week , I mentioned that i have a problem in the morning and worse at night with constantly clearing my throat . He thought it was silent reflux and suggested i add gaviscon at night , along with 40mg omeprazole in morning that I already take. I am starting that today . I also have IBS which causes bowel problems , stomach pains and burping on occasion. I used to control things quite well with peppermint oil but things got a bit worse and now i find colofac works better.

Im still not convinced about the silent refux as I thought it was due to think saliva because of Sjögrens. Time will tell however if the gaviscon works . Best wishes , i hope things settle down with you xx

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Silent reflux could well be due to the thick saliva of Sjögren’s W? It’s very common for us with Sjögrens to have reflux and IBS due to the dryness.

The thing is that IBS isn’t a condition in itself - it’s like sciatica - it’s always a symptom of something else not working properly eg Hypothyroidism, Sjögren’s, Lupus, RA, anxiety, Diabetes, pregnancy, Hiatus hernia.

So with Sjögren’s the lack of moisture throughout our digestive systems is a great problem - plus the fact that many of us have autonomic problems affecting the reflexes and preventing good peristalsis in our guts from top to toe. X

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weathervane, you reminded me about Sjögren's, the lack of saliva causes the gord because the saliva helps to neutralise the stomach acid

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Thank you. Brilliant info here, as always. Wendy x

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Wendy I’m glad you’re reading up and asking questions. Many years ago I went to see my old GP with a very persistent dry cough which just came from nowhere. He asked me if I had noticed any triggers. I thought hard and said yes bending to pick things up often seems to trigger a long fit. He immediately asked to look at my throat and said he thought I had silent reflux.

He gave me 150mg Ranitidine to take twice daily. My cough was gone within a few days and only returns sometimes after a bad cold or flu or when I stop taking it. I think I class it as my most important med next to Levothyroxine and the new constipation one.

I have an older friend who had silent reflux undiagnosed and he went on to get oesophageal cancer as a direct result. This spooked me so I’m very vigilant about taking it. If I get extra reflux then I switch to Lansoperazole instead for a few days.

If I were you I’d take 150 twice daily. Unlike PPI meds such as Omaprazole it doesn’t prevent the absorption of key vitamins and minerals or increase the toxicity of meds such as Methotrexate. Xx

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Hello

Oesophageal cancer scars me. My Dad died of it. My step father had pancreatic cancer that spread to his liver and he died 3 weeks after it was finally diagnosed and my Dad died 6 months later from oesophageal cancer that was diagnosed too late and had spread. Neither got far enough to try chemo, even though it was offered. Both too late.

So all of that freaks me out.

I have just posted about my GP appointment today and nothing will get investigated locally and 99.9% sure I wont get referral to Dr K's NHS clinic at St George's. So, VERY angry right now about this all being igored and left alone.

I will carry on with the ranitidine, as you suggested. I am taking 75mg a day and will try harder to remember this daily. I will then discuss when I see Dr K again.

Wendy xx

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Wendy please do something for me and phone GP tomorrow and urgently request prescription for stomach protection to take immediately. Your GP is not acting responsibly by prescribing steroids without it. Never mind cancer - you might have an ulcer forming.

75mg Ranitidine is a drop in the ocean and this really can’t wait. I’m prescribed 150mg twice daily - max dose and I take it without fail. You are allowed this much daily and it’s essential when on steroids or NSAIDs. Please do something about this today and phone your surgery first thing tomorrow. I’m so angry for you I could scream but it wouldn’t help you or me - so I won’t!! 🤗🤗🤗

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Hi Wendy, glad you’ve got your hospital records now so you can keep track of things. I can’t believe they didn’t always copy us into letters - when it’s about us!! I must order mine but feeling cross at the thought 😂

Not sure yours would be classified as silent reflux as it seems like you have clear symptoms and silent reflux is usually symptom free? I had similar to you last year, was in a horrible flare and taking non coated steroids (never again!) and felt like I was choking, being strangled and had a constant sore throat. Didn’t take long for the omeprazole to make a big difference but like other people I’m wary of the side effects. I sometimes stop taking them but my symptoms return quite quickly. Some people only need them for a while to get it back under control so that might be you but maybe the MMF is exacerbating it? I know steroids make mine much worse.

Hope you find something that works and pleased you’re mostly well enough to enjoy the summer with your children 🙂

Xx

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I may be wrong but I think silent reflux is acid reflux with no direct symptoms such as tasting the stomach acid as it spills back up or having heartburn? I am very prone to non silent reflux (confirmed by endoscopy), which is the more common one, so it’s easy for me to know when it’s occurring as I can feel it burning my throat and chest - each of my 3 pregnancies was a nightmare!

I don’t think Wendy has it like this so this means hers would be classed as silent - her cough and sore throat and attacks of gastritis would be the main symptom of the “silent” version . Xx

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Yes I think you’re right but as she has acid in mouth and the typical sore throat that’s less silent and hopefully more detectable? X

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Oops must have missed acid in mouth - sorry! Xx

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Twitchy, that has only happened this last Sunday - after intense stomach pain. First two attacks of severe pain in upper abdo, under ribs, middle - was 11th & 18th July. The in lower left abdo on Sunday with acid. First physical signs for me that something is wrong?

I have sore throat again too.

Just posted about my GP appt today.

Wendy x

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That's only happened once - the acid - on Sunday. Until then I would say Silent.

xx

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Read and responded to your latest post - absolutely 😡😫on your behalf

Sorry the acid passed me by 🤯You don’t say whether you managed to report the awful gastro attacks to your GP or ask for direction on Ranitidine? But when I read that you take NSAIDs often for headaches and are on steroids without stomach protection I slightly panicked for you. This is really no good Wendy - my rheum said on phone that anyone on NSAIDs or Prednisolone needs max stomach protectors to take alongside. I’m a big worrypot about you now? Xx

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Like I’ve said before, no one had taken charge of my care. And although my GP is good and had cooperated with Dr Kaul’s drug recommendations on my repeats etc, she’s a GP. I’ve been left in her care but I have so many issues, how can she be expected to know it all. I didn’t tell her I was taking ranitidine. I told her I’d had excruciating pain in abdo three times now and I’d considered phoning an ambulance the first time. I told her I was thinking reflux. And I mentioned sjogrens. But we got side tracked by politics of referral, again! Xx

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Politics later Wendy - think immediate stuff now, take 2 Ranitidine tonight and speak to a gp or at least a pharmacist tomorrow - Twitchy’s orders!!! X

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Hello. I have had a think about your orders. My GP is part time and works different days every week, along with difficult reception staff. So, tonight I have drafted a letter to my GP which I will print and hand deliver tomorrow. I cover my “silent reflux “ issues in detail and add that I’m taking ranitidine now. I ask her about gastritis or stomach ulcers. I’ve told her about my ENT appt in 2014. I’ve also said, as I got emotional and distracted that I didn’t cover everything, so I have taken the opportunity to list all of my symptoms to date. She wasn’t my GP at the start of this and you never discuss it all in one go. So might help her to my referral application. I have also Cc’ed it to Dr Kaul to keep him in the loop. So, by putting it all in writing, it’s all in my notes. No one can deny knowledge. Both GP and Dr Kaul will see it all how it is right now. Is that OK? Xx

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Well done you! 👌🏼I hope you might double the Ranitidine meanwhile though - I don’t like your accounts of this tummy chest pain at all. X

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Morning. Letter delivered by hand and marked urgent in red. I am worried myself. But not for the first time. I am trying to keep my anger and frustration under control, as my family are home and I know ultimately it does my health no good. if this ends up with us paying for all of these tests I shall be very angry. Or even more angry. I just don't know what else I can do. I've involved my MP, my AM, Vaughan Gething, a petition. We had a plan that we would make our official complaints individually and as a group with Hywel Dda Community Health Council and see how that goes - meeting 22 September and then take it from there. But I so angry right now, I just want to sue for clinical negligence and be done with it. xx

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I had to look up Hywel Dda before replying Wendy. It’s great that you’ve hand delivered your urgent letter. But I strongly recommend you send it electronically too. This should be easy enough as your GP’s email or practice secretary’s or practice managers’s should be on website and usually is just their christian name dot surname @nhs.net.

The reason I’m recommending this electronic sending is then you have a record to prove it was delivered. I handed my letter of complaint to the nasty neuro by hand in February to GP, rheum and the neuro, whom it was addressed to. Four month’s later I was moaning here about complete lack of response and Melba1 very astutely pointed out that all letters should be on electronic record if we later need to lodge a formal complaint. Otherwise they can look askance and say “oh sorry - somehow I never received this??” And you can’t do much to disprove them. Also if it’s sent to your GP by email she may well pick it up much more quickly as GPs generally do read their emails wherever they are.

From my perspective it’s very irresponsible that she hasn’t made sure you have good stomach protection as you are on such powerful meds which she’s prescribing. I know you like her but this is tantamount to negligent - if you have a stomach ulcer then it would be on her or the practice’s head! Meantime, if you haven’t already, see your pharmacist and ask their advice on dosages and potential pharmaceutical conflict as that’s something you can do straight away hopefully? Xx

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Ill try to find an email address and I will pop to pharmacy later. xx

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👌🏼👍🏻🤞🤗🤗🤗

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No email address for my GP surgery or my GP.

So behind the times here!

The receptionist I handed it to, used to work with me at the junior school before we both left. So I know her name and she chatted to me. So hopefully I can trust her to pass it on???? Or should I pop a copy in the post for the practice manager too?

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I would. Or just go in or phone and ask for email address and explain that you think you need urgent prescription as you might have a stomach ulcer developing. That should do the trick?! X

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Here’s my letter. I hand delivered a copy this morning and as I couldn’t find an email address, I put a second copy in the post! ******

I write further to my appointment yesterday, Tuesday 7th August.

I hope you do not mind me writing to you like this but I got so upset and side tracked that I forgot to mention some new worrying symptoms to you properly. I had waited for about 4 weeks for that booked appointment and so wanted to write to you, rather than wait again and it be too late for this all to be dealt with and included in my application.

I did mention to you that I had had a sudden onset, severe pain recently. This happened on 11th July. I had picked my children up from school and we had gone into town to run some errands. I had very sudden and severe pain. In the centre of my chest, right at the top of my stomach, directly under the rib cage. It was very scary and intense. I felt like I could not talk to my daughter and that I wanted to just drop to the floor and curl up. I told her I couldn’t speak to her and I could not concentrate on what she was talking to me about. She was scared too. I was walking bent over, clutching my chest and wincing in pain. I just about made it home, but driving was very difficult and I was glad it wasn’t far. It lasted two and a half hours. I have not experienced anything like this before. I did consider calling an ambulance and now wish I had.

I posted about it on the Lupus UK/Health Unlocked site and people suggested Silent Reflux / Lupus inflammation / Gastritis / damage from steroids and other medication.

It all then rang alarm bells. When I was first diagnosed (November 2013) I complained of having had a very sore throat for months on end. It felt like I had swallowed glass. I was referred to ENT in Carmarthen, in May 2014. I had the camera up my nose and swallow test. I was told that there was nothing sinister and it was either silent reflux or lupus inflammation. I could not remember any more than that. So I requested a copy of my notes regarding this issue.

The letter from ENT to my GP (then Tenby Surgery) says that the exam showed nothing and I am a non-smoker. So he suggests I try Lansoprazole or Omeprazole to see if it helps my throat. He says that he talks to me about this and I do not know if it is compatible with my hydroxychloroquine. He finishes that I should see my GP if I want to discuss it further.

At this stage of my lupus journey I had no idea what silent reflux was (never suffering any kind of indigestion before, even with three pregnancies) or what the long term implications of all this could be. I am not a doctor. I do not remember discussing any of this with my GP, however it is a long time ago.

So, now 4 years later I have this attack of extreme pain and this is suggested.

It happened again on 18th July and this time it was a shorter attack but my husband was home and it scared him too. I could not function and just had to curl up and lie down. The pains are very sharp.

On Sunday 5th August I had a similar attack, but this time the pain was lower down, left side abdominal pain. I could not walk or stand. I could not talk. I did not eat that evening. Later I realised I was burping a bit and had an acidy taste in my mouth. I’ve never had the acidic taste before.

I do get a lot of abdominal pain generally, but never as severe as this and I had always put it down to lupus / IBS, as I have had IBS type issues before.

I should also say that I do still suffer with a sore throat quite often and with lupus flares.

I have bought Ranitidine 75mg over the counter, after talking to the pharmacist. I am taking it at lunch time, as I do not think I can take it within 2 hours of my hydroxychloroquine.

However, I thought you should know about these symptoms and the new medication I am taking.

I am very worried that these new symptoms are a sign that I have either had silent reflux since before 2014’s ENT appointment and it wasn’t properly addressed at that time or it is linked to my Lupus / possible Sjogren’s. (As you know I have had a dry, unproductive cough for well over a year now, it can be quite violent and my family run to my side every time I have it, it’s like I can’t breathe when it is at it’s worst, I also have dry eyes requiring drops, (Optician has told me I have signs of dry eyes) Dr Kaul told me my mouth was very dry at my last appointment too, I am always thirsty and drink between 2.5 and 4 litres a day, this heat has made it worse, almost permanent tinnitus and I’ve also suffered very dry skin including cracked and bleeding hands and feet. Plus I had a positive Anti-RO test at diagnosis).

Also, worrying, my Dad died from oesophageal cancer aged 67. He died just 7 weeks after this diagnosis and did not even get to chemotherapy, it was too advanced.

I have been suffering from headaches/migraine/cluster migraine/ice pick headaches/migraine with myalgia behind my ears and eyes for as long as I can remember and have taken various forms of pain relief over the years.

I recently tried Frovatriptan and I still take paracetamol and ibuprofen, but realised that I had taken 5 of the Frovatriptan 6 tablets in the box in a week. I am taking more pain relief than I realised, but not the max dosage of paracetamol and ibuprofen a day.

I also take 400mg hydroxychloroquine, 3g MMF, two anti-histamine, 50mg of Mepacrine three times per week and currently a month of steroids (two weeks at 5mg and a further two weeks at 2.5mg).

It is worth noting that I have not had to take any pain relief whilst on these steroids. Everything is much more bearable and I have a lot more energy.

Do I need a higher dose of Ranitidine to protect my stomach? Is it possible that all this medication is causing stomach issues, an ulcer for example?

I also take this opportunity to list my symptoms to date, as it is unusual to do this at an appointment and it may help your completion of my referral letter and funding application:

In no particular order:

• Various skin problems, including:

Sores on my scalp;

Rash / lesions on my back, chest and arms (discoid rash);

Malar rash;

Sores in my ears;

Sores inside my nose;

Sores around my mouth;

Scaly skin behind my ears;

Dry cracked and infected skin on my hands and feet;

Generally very dry and itchy skin;

• Photosensitivity – I have also experienced an allergic reaction at the dentist to the blue UV light used to set fillings. I have to protect myself every day including protective clothing & Dr Kaul told me that I should be wearing a hat all of the time to protect my head;

• Hypermobility, Beighton Score 5/9;

• Hair thinning, hair loss in patches on my head, scarring alopecia;

• Extreme chronic fatigue – it’s hard to explain the full extent of this but I nap most days and spend most days feeling like I could drop any minute, I feel like I need a nap after even just taking a shower, it’s a real effort to function at times;

• Extremely sore throat – like I’ve swollowed glass, for months on end;

• Pain between my shoulder blades;

• Headaches / Migraine / Cluster migraine / Ice pick headaches / Migraine with myalgia behind my eyes, ears and down my neck, facial pains around my jaw, tender scalp to touch, my headaches can be daily for weeks on end and my worst was over 6 weeks before I got it under control. This has recently changed in nature and now I can get the pains in my face, eyes, ears and neck with no headache.

• Nausea, including extreme car sickness when flaring and balance issues;

• Dizziness;

• Effect on the gut – like IBS, loose tummy / diarrhea / I’ve passed mucus a few times in the past, severe abdominal pains;

• Hot flushes;

• Night sweats;

• Insomnia – bad attack recently for over a month;

• Flashes of heat down my legs and throughout my body;

• Loss of appetite and slight weight loss (associated with periods of nausea & dizziness & flares);

• What I would call mild anxiety, depression, loss of confidence;

• Pain in the top of my both arms but particularly my left due to swollen lymph glands & a gland at the back of my head that has been raised for over 5 years now;

• Tingling and pain in my hands and feet;

• Bilateral De Quervain’s Tenosynovitis – a form of tendonitis in both wrists – ongoing for 4 years now;

• Tennis elbow for the last 8 months in my right arm – sharp shooting pains down my arm and weakness, so a history of soft tissue, tendons and muscles being inflamed;

• Memory problems, confusion, clumsiness, lack of concentration and impatience – I could not remember my own age and date of birth to work it out one day, I had to ask my children when they came in, I forget the names of people and objects – I have to describe what the kitchen utensil does for example and sometimes it is so bad that I give up talking completely. My husband says that at times what I think I have said hasn’t come out right and I’ve made no sense what-so-ever. I also cannot complete simple maths tasks even with a calculator at times.

• Symptoms of CNS involvement? Bilateral tiny frontal white matter high signal could be due to migraine. on my brain MRI and two areas of inflammation on my spinal cord/syrinx cyst (no chiari malformation);

• Muscles twitches and spasms in my legs and back;

• Involuntary head jerks/twitches – Dr Kaul calls these titubation tremors; (Relevant History? Paternal grandmother had Parkinson’s Disease);

• Wet/cold sensations in my legs and back;

• Hand shaking/tremors;

• Chest pains & costochondritis (inflammation of the ribs) – on at least 3 occasions for weeks/months at a time;

• History of Allergies – pet dander, house dust and grass pollen;

• Sacroilliac Joint Inflammation causing extreme pain and stiffness (positive Faber’s Test);

• Back pain – upper and lower – it changes;

Hip pain – continuous pain (I also have osteoarthritis and underwent a private hip arthroscopy in 2013. I was told at the age of 38 that I will need both replacing as my arthritis was more advanced than it should be for my age);

• Osteoarthritis in my knees – right is worse– to a lesser degree than my hips

• Hip Arthroscopy – key hole - left side April 2013, as I had lesions on my hip socket and a labral tear that needed repairing;

• Bursitis (inflammation in the bursa that cushions the hip joint) in my left hip requiring a steroid injection – ongoing and awaiting an appointment for another steroid injection;

• Vascular issues - horrendous unsightly and very painful varicose veins since 18 years of age, numerous thread veins on my feet and legs and now appearing on my abdomen, phlebitis thrombophlebitis and spontaneous burst veins in my legs, a tight/pulling feeling in my veins often;

• I possibly have Sjogren’s Syndrome – causing dry eyes requiring regular drops, a dry mouth and insatiable thirst, I drink between 2.5 and 4 litres of fluid a day and a permanent dry, unproductive, hacking cough,

• I have Tinnitus now virtually constantly, every day, tone, volume and type of noise changes all of the time;

• Asthma since childhood and Dr Kaul noted reduced bilateral air entry at my first appointment in April 2017;

• Shingles – February 2014;

• Oedema in my ankles and wrists;

• Raynaud’s Phenomenon;

• Recurrent UTIs;

• Severe & sudden onset upper middle abdominal pains, debilitating pain, just under the middle my ribs – (query silent reflux, GERD, stomach ulcer, gastritis, still to be explored).

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Good stuff Wendy. Hope she responds very soon. X

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Hello. You’ll be pleased to know that my GP must have got my letter (1 copy hand delivered & 1 copy posted) as she got her secretary to telephone me this afternoon and get me in for an appointment on Monday at 4.10pm. Double appointment. I’ve never had a double appointment before. Slightly concerned and relieved at the same time. Thank you for your advice. I am grateful. Hope you’re doing OK. Xx

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That’s great news! Hope the Ranitidine keeps away further attacks until then. Glad GP is taking this seriously and please, this time promise you will focus on silent reflux over Lupus and politics Wendy? Your GP is just human and has landed a complex patient who is being totally shafted by everyone else. So you need to let her focus on one thing at a time now and do her job properly. And not giving you a stomach protector is not doing her job properly!!

My GP says it’s okay for me to see her once a month and I book the next apt as I’m leaving. This way we avoid me having too long a list to go through.

Your list is way too long for most GPs to possibly get through well as you have such a lot wrong. So this time why don’t you give her the option of seeing you once a month (or twice just now?) for double apt? After all she has to be all things to you in lieu of NHS consultants doing their job for you - and that’s not possible for any GP - let in a 10 minute appointment! Xx

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Hello

I know! Why aren't we automatically CC'ed into the correspondence? We should be. I got wise to it and wrote to my NHS Dermy and Rheumy and asked that I be CC'ed in every time and that my request be recorded in my notes.

Of course, now I do not have an NHS Rheumy or Dermy.

I saw the ENT 4 years ago now and I would say that if this sore throat at that time was silent reflux, that was my only symptom.

Now, 4 years later, these last 4 weeks alone, I have started to realise that I might have symptoms - the chest pains etc and then Sunday, acidy burps.

That's the first time though.

Four years ago, I had no idea of the lupus / sjogren's / digestion issues etc. I was very new and very naive to this.

Now angry that these issues aren't dealt with properly in the first place.

The ENT kbviously knew nothing about lupus, as he says in his letter that I am not sure if hydroxy and those two meds will work together????

What are the side effects of the omeprazole?

Wendy x

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Hi Wendy. My symptoms are similar to your - acid reflux, lupus, Shogruns and more. I suffered sore throats for many years but doctors would say there’s nothing wrong. I now know it’s shogrins related or acid reflux. I have found gargling with a concoction I mix helps relieve pain. The recipe can be found online - miracle mouthwash. You can get a prescription but it’s costly and insurance doesn’t pay. (I’m in USA). It consists of equal parts Benadryl (allergy med), Chloraseptic throat spay(numbing) and Maaolox (indigestion med). All are over the counter. I use less expensive store brands. It really works and gives relief. You just gargle and spit it out - don’t swallow. Good luck. Hope you get relief. It can be so miserable!

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Thank you, that's so kind. xx

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You are most welcome! I take ranitidine, too, and hydrochloriquine. So have to be careful when I take it. I had all the swallow tests and nothing showed up. The gargle is the only relief I get. Hugs!

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Wendy you need your GP to prescribe max Ranitidine and refer you for a gastroscopy - which you can have under sedation. This is the only way to diagnose GERD, Hiatus Hernia and other possible oesophageal obstructions

Tell her (or any GP) about your father’s cancer and that you haven’t been on stomach protectors before and this should certainly put the wind up them. I was prescribed 300mg Ranitidine when I was on Methotrexate and Hydroxychloriqine - no interaction whatsoever. My rheum says steroids always require Omaprazole or Lansoperazole rather than Ranitidine - which isn’t strong enough. X

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Try the gluten free diet it could be coincidence ?i don’t think so I have been so much better .its worth a try (and I’ve lost weight) x

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I’ve been tested twice I think now and I’m not gluten intolerant or celiac. I’ve never noticed an increase in symptoms when I’ve had gluten either. Thanks for the tip though.

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Update. Today, Thursday, I’ve received a call from my GP asking me to come in on Monday at 4.10pm. Double appointment. The letter to her seems to have been taken seriously. Thanks fir all your kind messages and support. X

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Update. Today, Thursday, I’ve received a call from my GP asking me to come in on Monday at 4.10pm. Double appointment. The letter to her seems to have been taken seriously. Thanks fir all your kind messages and support. X

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Hi Wendy.

I've just seen this post and it could've been my daughter writing it. She has been suffering the exact same symptoms for almost 6 months on and off ( but mostly on) although it all started a couple of years back.

She's relatively new at this autoimmune game so it's knocked her for six.

Initially she was diagnosed with that good old cop out IBS. Nothing they gave her worked. More recently though she's been told she has gastritis, IBD which turned out not to be the case, Gerd, a bad case of anxiety and then waS hospitalised with unstoppable diahroreah, pain and breathing difficulties. She was later discharged and given the all clear.

It's been so bad she lost her job due to the amount of time off or having to leave work.

She's currently on omeprazole, mbeverine, colpermin and domperidone just for the bowels let alone the rest of her symptoms.

She has been fobbed off by so many doctors who don't have a clue while we all know it is connected somehow to our autoimmunity.

It's heartbreaking to see her suffer so I deeply sympathise with you and what you're going through.

Sadly I have no answers but I hope you get a difinitive answer and start to feel better soon. X

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