Hi guys I'm new here and can't thank the people who replied to my first post enough This is a great site !
After being told two weeks ago that I tested positive on the test I'm waiting the next three months to hopefully get some answers .
I'm putting all the pieces together and wondering is this why I've been suffering so many differnt issues.
I have been really bad all week with heartburn raw feeling in thrust. .This has been happening for years but has gotten worse the past month or so to the extent I ended up in A and E about one month ago and changed back to lansorprazole again .
Tablets are having no effect and have this constant gritty taste in mouth and no appetite at all .Does anybody else with lupus or suspected to have lupus suffer acid reflux that willnot respond to ppis ?
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Ryanmac84
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I have GERD that I've eventually associated with Lupus (or one of the raft of symptoms I had which should have told me something was up). I don't take PPIs partly because they made me feel ill and partly because you don't know whether reflux is caused by low acid or high acid. You can test that yourself by, if after you get symptoms, drink some lemon juice and if it makes you feel a little better you may have low acid. I think you can get digestive enzymes to help if it's that but better to do it through a nutritionist.
I've eventually controlled it by diet i.e. keeping a food diary and eliminating things that set it off. That said I've suddenly developed the capacity for new food intolerances and got awful reflux after eating some organic beef mince. Go figure! I'm still getting symptoms after a week, which is mucking up my pred reduction programme.
Looking back, this was my first symptom, which I foolishly ignored for some months, causing damage to my oesophagus. I now take 2 omeprazole twice a day. A huge dose, on which I've experimented cutting down. No, it's needed, and after having ulcers in my oesophagus ( I emphasise here that they were the result of ignoring severe symptoms for six months) I suppose I will have to risk the consequences.
Do try to experiment with what may trigger it for you and follow that. I love coffee, but that is now a once a month treat. My oesophagus is scarred and narrowed so a lot of food can't reach my stomach. Any kind of stress triggers it badly. Trying Treetop's advice is a good idea.I wince at the thought of lemon juice but that's entirely a result of my stupidity.
There's lots of advice on the internet about GORD/GERD and various foods. It's always worth experimenting. Please don't let my experiences scare you, and please chase up the problem. I very much regret that I didn't.
I was on 2 omeprazole a day for months afew years back .Back on the lansoprazole now tho after symtoms been getting worse and not getting any relief at all !I partly blame rightly or wrongly my troubles on taking ppis and ranitidine for years .Been told I've A long wait for another endoscopy
I've bee on ppis for many years now tried going back to ranitidine the past year but the acid has increased .Had endoscopybdine around four five years ago and inflammation was found in stomach .Gps just keep throwing tablets at me with no relief .Been referred back to gastro people but waiting list is unbelievable apparently
I'm always pretty appalled how PPIs are thrown about like sweets, particularly when there are other options to try first and that they can make the problem worse (it just depends what's causing it). There's also a bacteria that causes GERD, so they could test for that too.
I forgot to mention positioning when you sleep - something I picked up on when my daughter was a baby with reflux. Prop yourself up on pillows so your back is raised, or elevate the head of your bed. It can save a lot of the morning soreness.
You can eat your main meal at lunchtime, and don't eat after 5pm, too.
Chewing slowly means that food is half digested when it hits your stomach. It helps.
My trigger foods are tomatoes, coffee, gluten and high carb intake in general, red wine (and alcohol mostly, but I can get away with the odd vodka or whisky).
I think Pred does but not hydroxy, though don't quote me on that. I'm not drinking at all atm, because although I like a drink I always respond to serious illness by giving up. But then I have a young child so can't afford bad reactions and so forth.
Sorry to hear your suffering those symptoms. I've had bouts of the acid coming up and burning the throat, not all the time just occasionally but more so left side pain, I went to see gastrologist and results came back that I have erosive gastritis.
I think maybe you should ask your GP for a referral to a Gastroenterologist with a view to having a Gastroscopy because they will be able to put an endoscope in your mouth, down your esophagus and down into your stomach, and look at your digestive tract to see if there is any erosion, inflammation, ulcers or abnormalities, it could be that the muscle at the top of the stomach has a weakness and is letting the acid out of the stomach. It's a possibility that's its being caused by a medication too. I know that gastritis in rarer cases can be caused by an auto immune disease too.
I'm seeing a private gastroenterologist at the moment so am lucky for that because I'm getting things done very quickly and getting the latest recommendations; he says that the most effective proton pump inhibitor on the market at the moment is Esomeprazole at 40mgs (as oppose to Omeprazole), so it might be worth suggesting the Esomeprazole 40mgs to your GP or consultant and see if you can change.
I had Gastroscopy done while taking Omeprazole and had been on it for a year to apparently protect my stomach from Naproxen....it didn't protect the stomach and I have severe erosion and inflammation cause by an anti inflammatory drug 😥😥😥
Can I also recommend a herbal product that had previously worked for me (stupidly when I ran out I didn't order more and only developed my problems when not taking the herbal remedy), it is called Comfort Zone Digestive Complex and its made by a company called Solgar, its absolutely brilliant. Maybe Google it and have a read about it and see what you think. I'm going back on the product again now. I got mine from Amazon but I know they sell it on Holland & Barratt online, its £19.99 there but the penny sale is on so you can get 2 bottles for £20.
Hope you feel better soon and get sorted. Claire 🌞
Been referred again on to gastroentoligist again funny enough by the same doctor that ran the anti s DNA test on me in hospital .Been told I could be waiting a really long time on another endoscopy .
Had one years ago and a barium swallow test done everything came back normal apart from some inflammation in stomach .
I have been taking ppis and ranitidine for several years now and symptoms definely flare with stress .Past week has been so painful .
My gps had fobbed me off with not much could have changed since my last endoscopy 4)5 years ago and just keep throwing tablets at the problem .
I'm just concerned with all the throats pain and rawness that there is damage being done like you said happened to you
Ah that's good you have been referred again, but not good about the wait.
This is the problem, we just get fobbed off with tablets, sent on merry go rounds, and put on horrendously long waiting lists. The system isn't working and people are suffering for ages before getting seen and treated and more and more damage can be done.
You are very right that results of endocopies and barium meals from 4 or 5 years ago, could and probably will be different in their results, to if you had them done now. A lot can happen in that time and they need acknowledge that and give you more tests asap. If you get too bad and they continue to drag your referral out, maybe you could do a complaint to PALS or NHS England to get things moving, my friend did the latter and she got their attention immediately and an appointment followed 1 week later.
I totally understand the worry about the raw throat, I would be worried too. I'd definitely give the Solgar herbal capsules a go because they contain all the right enzymes to digest different food types and some of us don't make these enzymes. Also try to eat a high protein diet with low carbohydrate, and definitely low starchy carbohydrate diet, because if you have a higher than average amount of acid, this will give the acid something to work on. Acid will digest carbs very quickly so trying to avoid them and eat meat, fish and eggs would really help a lot. Staying away from food and drink with caffeine in (tea, coffee, cola, chocolate etc) will also help, as well as avoiding sugar and alcohol 😢 too, you probably know that anyway, but just to mention.
Never heard of the esomeraprozole I'm on the lansaprazole at the moment but they just aren't working .
I'm wondering is this constant burning goin from my chest up to mouth maybe a result of lupus and causing problems and not reflux or maybe lupus causing the reflux to increase .Im force feeding as I've no appetite the last few days bloody hectic it is .
I have suffered with heartburn most off my life also my father and brothers. We have tried lots of different medications. But unfortunately the heartburn always is stronger than the medication. Some days it can make me feel so miserable 😭.
Your gp will be able to give you something stronger or refer you to see a specialist. I truly wish you well and take good care of yourself. xxx Jan101
I'd agree with others that another expedited gastroscopy is needed, particularly if, like me, your throat it burning. I had my gastroscopies fast tracked because I had lost so much weight. They feared something sinister at the time, but I was clear.
Try a food diary because you may be able to pinpoint the foods that make it worse. x
Dear knows how long il be waiting the NHS over here in Northern Ireland is terrible huge waiting lists .My letter said that unfortunately the waiting times for gastroentolgists are linger than they would like and they would be in touch !
No PPIs helped mu GERD the only thing that ever helped was baclofen. It's used for gerd off label and luckily my gastro prescribed it and im on it for many years now. Wonder drug for me, as i suffered so muh could not even go to sleep without food coming up mu throat for two years...
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