LUPUS UK
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Heartburn remedies anyone?

Simple question. My current drug regime is like a recipe for heartburn, which is not only miserable in itself, but may be masking symptoms of other things.

Up till recently, I have been fine taking just 4mg of enteric coated pred plus HCQ, adding in low dose lansoprazole when I get a flare-up. Peppermint tea and sipping at water helps too.

However, I'm now on 25mg methyl pred - which I can't seem to find a gastro-friendly version of - plus azathioprine. My heartburn has gone nuts. Last night was particularly entertaining, and I'm awaiting a call from my GP to come and rescue me this morning.

Meanwhile - has anyone any brilliant ideas? Thank you x

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Well apart from methyl Pred I’ve been on all the meds you mention. And I carried 3 babies to term with heartburn for each lasting the full gestation. And I do have GERD but keep it under good control for the most part. My own remedy now is boring old stuff such as slugging a cap of liquid Gaviscon, avoiding spicy or acidic foods, eating little and often, avoiding NSAIDs (and long term steroids are hellish in this respect for me too).

I’d feel guilty not telling you that I had same with Aza and ended up with full scale pancreatitis after only 3 weeks on it. Unfortunately this was misdiagnosed as cholecystitis (even though it was my left side) and then UTI sepsis until finally a very wise Crohns specialist surgeon who was about to retire came on ward round and picked up the bottle of Aza and said “what’s this for?” And then gave meaningful looks to my brash young surgeon about it! Even then my rheum restarted it once my soaring bloods and pain had stopped. Within an hour of taking it I was vomiting bile in total agony - re-admitted! Only then were acute pancreatitis and GERD confirmed.

So any spreading and worsening of the pain around your oesophageal area to flanks needs taking very seriously - just in case you’re the one in 299 like me who has this adverse reaction to Azathioprine. Sure it’s just horrid heartburn/ gastritis with all those meds - but just so you bear this in mind.

Otherwise - I’m on max dose prescription 2 Ranitidine daily, morning and night, and haven’t suffered often with heartburn since starting this regime 4 years ago.

Txx

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Thank you, T. I actually replied to someone here with the same question a couple of years ago, so its not as if I don't know a lot of the answers! But isn't it always the way that when you are in considerable physical distress, this knowledge turns to mush and it's impossible to think straight? 'Make it stop!' is the only halfway coherent thought one has. Yesterday morning I was thinking optimistically about getting a rufty-tufty mobility scooter to go hill-climbing in. Today, I would be quite content to lie down and quietly die. Hope you are finding some moments of peace today x

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Very much with you in spirit and reality Mike. Had a terrible night last night too - but in my case it was gastritis from antibiotic and this raging fury with nasty neuro and man GP for attributing a common and fixable problem to a mix of zebra and functional. I’m struggling to know where to put these bursts of fury.

We actually have red arrows doing full display around our river today so I and all the poor birds have good distraction on doorstep right now - vantage point a half made bed.

From my perspective re reflux - I think you should avoid getting pregnant ever but also think that mobility scooter for rough terrain would be fabulous for you. My automatic mini convertible has given me a new lease of life - I tear about in it with wind in my hair, clad in lashings of factor 50 and shades, feeling free as a bird - despite my increasingly clipped wings! Xx

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You poor chap! I generally say the start of my symptoms started while Kate was in labour with Prince George. A few days of heartburn while attending No 1 son's graduation kicked off into an interesting evening. I'm not on your meds but need 2 omeprazol twice a day to keep it in check. Don't let it go on too long ( as I did) because it's caused me some damage.My diet is very limited. NSAIDs are out of the question.

I drank gaviscon straight from the bottle during my second pregnancy, but otherwise I only had periods of up to a month when highly stressed at work.

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Those royals have a lot to answer for....yes, I need to get serious again about the stomach stuff - complacency plus my know-it-all air with my medics probably deters them from stating the obvious sometimes - not to my advantage. A morbid joke: 'I just heard my mate Gavin died suddenly from severe heartburn' 'Really, I didn't realise how serious it could be' 'I know, I can't believe Gav is gone' X

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I get strange looks when asked how long I've been ill and I tell them however old Prince George is! Better write the date down.

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Good old Gaviscon is my savour. I have the tablets...easier than carting a bottle around. Raising the head end of your bed is recommended but haven't tried that. I apparently have a hiatus hernia. I only found out when I had a MRI recently for something else. But it doesn't help. Good Luck !

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Ho whisperit , the steroid infusion with the rituximab infusion caused severe gastritis. The Nurse suggested that they slow the infusions and I should double my omeprazole, so i now take two 20mg every day and things are under control. I hope you can find something that works for you 🌸

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Hi Whisperit

Severe heartburn can be very frightening and no wonder lots of people end up on CCU's because of the symptoms so I'm sorry your paying a high price for your treatment. It's a tough juggle!. I'm sure your GP will suggest doubling the drug you already take to help. There's also omeprazole , Lansoprazole and ranitidine that I take to name but a few so plenty to try!. Just wondering if you've been tested by an endoscopy lately to see if there are any changes caused by these drugs or if you've developed a hiatus hernia like I have?.

Look forward to your update on GP call and hope your better soon. X

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Ever considered work as a locum GP, misty? Sure enough, she prescribed a double dose of lanso, lashings of gaviscon and 999 if no better. Like you say, it's never a simple decision, though. The flushing/sweating symptoms that I've had for ages are intense enough today that I could fry eggs on my forehead. And bacon on my cheeks. It would be good to have some reassurance via bloods etc, but experience tells me that once in the hospital, I'll be left on a trolley without meds, drinks or a fan for hours....so I'm hanging on for now, and hoping for the best overnight.

Gosh, I cannot tell you how reassuring it is to have you and the other guys here - these are the times when one really needs the support - and the cat is useless. x

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I'm sorry Whisperit your suffering so much. This heatwave is nasty but hopefully coming to an end from tomorrow on. I did also learn from a paramedic that our medication is a third less effective in the heat which accounts for worsening symptoms suddenly!. Do hope your symptoms improve for tonight and good to know my advice is helpful, thanks. Take care X

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Thanks, misty. The courage of people on the forum is amazing. I used to think I was pretty tough as a climber and then after recovering from femur fractures a few years ago. But these last 3 years have been more brutal than any mountaineering epic, and there are so many here who go through worse x

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Wow!. You have been thru a lot to recover from femur fractures!. It's awful how much your life has changed thanks to ill health!. You are a toughie and will get to bottom of your symptoms!.

I've been there and got the t- shirt where chest problems are concerned and come with 8 years experience of them so glad I can make a difference!. It's particularly tough too being ill on your own!. Do agree with you that there are many on this forum who cope with so much!. X

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Tablespoon of Apple cider vinegar in a glass of water before or after eating helps with my reflux. But not sure if it would be suitable to take with medicine. Have been prescribed omazorpol (spelling ?) in the past by GP and tried many over the counter products, but the vinegar works the best. Sometimes I can forget to take it for weeks (stupid brainfog), reflux and difficulty swallowing cone back with a vengeance and that's when I get a craving for salt and vinegar crisps and chips.

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Thanks, I will try that x

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Very interesting information about swallowing and craving for salt. 👍

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I have been on the maximum dose of lanzoprasole for over 10 years, taken 30 mins or more before breakfast and then the larger tablet of ranatidine at night. My acid reflux and heartburn iw well controlled on these tablets.

best wishes Judith

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thanks, yes, lansoprazole has worked well for me until now - it's the big increase in meds that has upset things. I got a big box of 30mg capsules delivered this afternoon! x

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Ugh it's a curse. I try to avoid meds for mine, and I control it via diet (avoiding the things that set it off), apple cider vinegar when desperate and sometimes additive free baking soda too. Even then I had a severe reaction to asprin, so have to take the horrible bruise inducing clopidogrel instead. If your meds are setting off maybe try an alternative. I would never take non-coated stuff and had to have an argument with my GP about it. Good luck x

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Sounds good. It took ages to get a supply of 1mg g-r prednisolone tablets. Like yours, my GP insists it makes no difference. We know different. x

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Have they not Prescribed you Omeprazole? It Works 'Wonders', for me.

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Thanks, AndrewT. Yes, I took omeprazole for about 2 years and found it very good. Switched to ranitidine for a change - no good - then lansoprazole, which has been very good too. So hopefully it's just a case of having to readjust to the bigger doses of meds I'm now on. It's good to have some non-pharmaceutical solutions too. x

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Hi

I too suffer from acid indigestion/reflux and some nights wake up with acid in my mouth. Daren't breath in case it goes into my lungs, I feel as if I'm choking and feel panicked at the same time. I sit in and swallow it back down then start coughing with the burning feeling in my throat. My doctor has prescribed esomeprazol to take morning and night. This is a generic form of Nexium. We can't get Gaviscon in Spain but I buy a bottle of Almax which is a similar thing. I had a gastroscopy which shows chronic gastritis. I try to sleep on my left as this helps the acid stay in your stomach but often roll over in the night!

Good luck in finding something that works for you.

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Thanks SLEepyhead (I see what you did there :) )

It's a problem for so many of us, isn't it? Positioning in bed does seem to help. x

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Hi there Whisperit

I had this issue about 1 year ago. Hellish, debilitating heartburn that caused real mayhem for me. My GP did refer me to have an ENDOSCOPY and that showed healthy oesophogus and stomach, so it had to be diet related. Something I was eating or drinking that was the trigger because it did not happen everyday, so I ruled out the medication as being the cause.

I found myself searching online for symptoms of Wheat Intolerance and behold that was my issue. I am Wheat intolerant. After cutting it out of my diet, which was not easy on many levels, that heartburn issue vanished. Occasionally I have discomfort if I drink too many caffeinated drinks, eat quickly or eat fried foods. I hope this account will provide some useful information that you can take away and use.. Good luck. Sukie

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Yes, I am increasingly persuaded of the importance of diet. One thing that has contributed to my current crisis is that the big boost in steroid dose has given me a huge appetite. After 18 months of constant nausea, I have been making up for it by snacking and eating chocolate. Bad, bad idea x

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Interesting enough that you mention chocolate. It is one of the foods that trigger heartburn in my chest. If eaten on the same day as Cheese, call 999. It's that bad! I avoid chocolate these days and eat mild cheeses on the odd occasion. I have to police what I eat because I'm terrified of having a repeat of those awful episodes. I forgot to mention earlier, that I've been through most of the stomach protecting drugs, such as Omeprazole, Pantaprozole etc. I met up with a different doctor who recommended Ranitidine 150mg and this was prescribed a few months ago. So it's probably a combination of these and avoiding wheat which has given me relief. A lot of our approach to managing our long-term health will involve trial and error. We, all being different, will not find every thing that works for somebody will necessarily work for us. Researching online can be very helpful. There is an ocean of useful information out there if you know where to look. Alternatively, you can Ask.com or Ask Google. Take care and let us know how you get on. We want a positive outcome very soon

Sukie

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Yes, chocolate is one of those things that you just know is bad for you, even as you're wolfing it down! Thanks for your thoughts x

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Dear Whisperit, you need a decent stomach liner. I can't quite believe that you have not been prescribed one already. At first I took omeprezole but when this was doubled I had a massive allergic reaction...head to foot itchy rash.....so now I take 300 mg ranitidine hydrochloride, once a day at night, often marketed under Zantac. In the meantime, you could grate a piece of fresh ginger into a mug, add honey to taste and hot water and sip. Ginger is very good for the digestion. You will still need your stomach liner though so very best wishes for a good conversation with your GP, best regards, Lily

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Thanks Lily. It's one of those things that has just gone under the radar - until it decides it wants some attention! I have fresh ginger on my shopping list now x

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I forgot to mention that you need to peel the ginger.....might be obvious but just thought I would mention it. We also put it finely sliced in stir fries.

Take care of yourself. Very best regards, Lily

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I used Gaviscon when acid reflux was a burning problem. Its improved now, doesnt flare up as much. I'm on omeprazole, one capsule each day following ulcer surgery some years ago but there have been times when I've needed instant relief and Gaviscon does the job. I have a bottle on hand and the tablets as well

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that's definitely a lesson - never forget to have supplies to hand :)

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Yep another one with hideous heartburn here. Unfortunately I have now reacted to omeprazole, lanzoprazole, another “Azoles” and also ranitidine so cant take anything. I’ve just started back on slimming world and it has stopped pretty much entirely so I think for me it’s either sugar or bread that sparks it. Diet won’t stop the reaction to meds fully but maybe looking at it carefully might get it down to a level where lanzoprazole works again? Good luck

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Oh gosh, you must have suffered, you poor thing. Yes, I must get some discipline back into my diet. Stop grazing all the time, for one x

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Hey whisperit

Sorry heartburn is bothering you. I take omeprazole 20mg daily. For immediate relief a milky drink is an old time remedy a wise Consultant swore by! I also take Yakult drinks or similar as my digestion in general is troublesome. I used to take Tums with immediate relief but care with other digestion products advised on label , like don’t take within two hours of other remedies. I would say if your symptoms do not settle it may not be a side effect of medication and you should see a doctor to confirm reflux not a symptom of Lupus. It may warrant a referral to gastroenterologist if not settling. Also make sure you eat a decent breakfast with meds.

Hope it settles down for you.

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that's helpful, thank you. Today has been much better, thank goodness. x

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I usually have yogurt with honey. But last time a neighbour suggested soda water with lemon, honey and pink Himalayan salt and a pinch of black pepper. I didn't have the salt and forgot the pepper but had the rest...and seemed to ease off after 2 glasses. Was a nice drink in this weather!

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thanks! That's a bonus too! x

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I take a daily medication called pantoprazole. And I take tums and gas x as needed. Stay away from gassy veggies such as broccoli ( which you should not eat if your thyroid is bad anyway ( read up on that) and this is all helpful for me🌝I’m off to bed now. I’ll read and respond More tomorrow! Hang in there! Xxoo Best to everyone!

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Hi whisperit

I take a number of tablets and due to that I get terrible indigestion. I take ranitidine twice daily and it really helps.

I hope that is helpful for you. Take care xx

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Sorry you are troubled by heartburn , I take ranitidine now I was on omeprazole for years until I discovered it was that that was causing my stomach problems diarrhea etc . I find a teaspoon of arrowroot powder in water helps with heartburn and sickness , as others have said a drink of cider vinegar helps with lots of things it may help with the heartburn to , I hope you find something that helps soon take care x

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Hi Whisper,

I see you've received lots of replies already. If no one has mentioned Licorice root, it works like a charm. You can probably order some on line if you can't get out. But just chew it and don't swallow. Check with GP first. I haven't found any contraindications but always good to check. Hope it helps!

🌻🤗

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Thanks Ladyuponthelake

I've always enjoyed a bit of licorice root. It is one of the things (grapefruit is another) that is known to interact with steroids so as to increase/prolong plasma levels of circulating steroids. I doubt that has any appreciable effect in the quantities one has when chewing a bit of root, but like you say, it's something to be aware of. x

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Ahhh so there is a contraindication, sorry didn't see that before. I'll keep it in mind. Shame it works well. Sorry 🌻❤

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I’ve only just seen this post and am sorry to read you are suffering with heartburn. Something that I find helps, as does my Mum and brother, is M&S strong mints. The ones that come in the small, flat, rectangular tins. Sucking three or four at once, (they are small), usually does the trick. Find these a blessing.

I hope you get some relief soon. Xx

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thanks, GE. Will try :)

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