Very bad taste in my mouth

[Mstiles]

Hello everyone,

I’ve had acid reflux off and on since this PMR/GCA experience, but for 3-4 weeks it’s been a lot worse. I’ve recently had a lot of stress, can this be a factor? It seems to hit about an hour or so after eating. I’ve been managing it somewhat by watching diet, taking Tums, and eating dinner earlier, but now I’m experiencing a horrible taste in my mouth, especially in the mornings. It’s ruining my morning coffee!, one of the simple pleasures I look forward to every day. Brushing my teeth actually makes it worse. I do have dry mouth at night and use the Xylitol dry mouth tablets for that.

I haven’t tried any mouthwashes to help.

Has anyone experienced this? Who should I see for this problem? Probably the dentist for sure, but it’s so expensive.

Food isn’t tasting too good either and I don’t need to lose anymore weight.

Thanks everyone for any suggestions.

Currently on 13 mg pred, tapering to 12.

Also in the last 6 months my A1c has gone from 5.6 to 5.8.

[PMRpro Ambassador]

I have just turned off replying to your other post for the moment - as far as I can see they are almost identical except this has a bit more? It is confusing to have both running - is this the one you would rather have or did I miss something?

[Mstiles in reply to PMRpro]

I may have posted it twice? Sorry!

[PMRpro Ambassador in reply to Mstiles]

No apology needed - it can happen very easily and I just wanted to be sure!

[Hidden]

Whatever treatment you try it would be a good idea to get a mouth/throat swab taken first as have you may have a low-grade bacterial infection.

Have you tried Gaviscon Plus as that put a layer in your stomach to stop the acid reflux?

I have a flavour free toothpaste now called OraNurse, as my mouth was badly damaged by chemo and one of the things I can't tolerate is toothpaste as it burns my mouth and tongue.

Hope you feel better soon

MrsN 🌷

[Mstiles in reply to Hidden]

Thank you Mrs Nails, very helpful.

[Hidden]

Dry mouth and acid reflux leaves a, excuse me, terrible mucous in your mouth that tastes and smells bad. I had to change my toothpaste to one without sodium Lauryl Sulfate (sls). It's a foaming agent I think. Within a few days the taste had gone by treat reflux too. Try something like ranitidine/zantac instead of tums. Chewable calcium dries the mouth and sticks to the teeth. No mouthwashes that contain alcohol and sips of water throughout the day and if you wake at night. Hope that helps. 🌻

[Mstiles in reply to Hidden]

Thanks Poopadoop. I can’t tolerate SLS either, it gives me canker sores. I’ll try something other than Tums.

[Hidden in reply to Mstiles]

I visited family and forgot my washbag...had to use their toothpaste....once home had a mouth full of sores.

[Mstiles in reply to Hidden]

😟 and they hurt!

[SnazzyD]

Hello. Generally a vile smell means bacteria which could be anywhere from your teeth, salivary ducts, tonsillitis material to your stomach. A swab has been suggested and it might be worth asking to a Helicobacter pylori test too (poo or blood). If you have poor saliva output (stones in ducts??) it could mean your normal oral bacterial effects are less diluted. A check with the dentist would be an idea if you haven’t been for a while as dental caries and gum disease can cause serious problems elsewhere in the body. It’s worth a whirl if only to get back your morning coffee pleasure!

[Mstiles in reply to SnazzyD]

Thanks Snazzy. Yes, morning coffee is essential! Guess I’ll be making more appointments. Something’s not right so time to figure it out.

[Hidden]

I'm wondering if you need a PPI to line your stomach. I think a visit to the dentist and a discussion with your doctor is due! Keep us posted as to how you get on.

[Rache]

Hi Mstiles, a few years ago, I had a similiar problem. All food tasted horrible, couldn’t even stand the taste of toothpaste or mouthwash. I had a dry mouth also. It was just after radiotherapy treatment for breast cancer. I was losing weight and was very worried. My GP suspected it might be ‘silent’ reflux and prescribed a proton pump inhibitor, Lanzoprazole, which reduces the amount of acid in the stomach. Hey presto, it worked! Food tasted normal and I put on weight again. People on this site suggest Ranitidine instead which also reduces stomach acid in a different way but I find it doesn’t work as well for me. An unexpectedly simple solution - maybe this would work for you.

[Mstiles in reply to Rache]

Thanks for your response Rache. I will consult my doctor. This isn’t good as I’ve lost weight from th PMR/GCA and need my appetite!

I’ve read that proton pump inhibitors are not good to take for a long period of time. Have you been on it for a long time?

[Rache]

Sorry for delay in replying - just awake. I have been on PPI’s since 2015. Would prefer not to be and have tried other options such as Ranitidine and Gaviscon but they are not as effective. While I haven’t ever had a return to my original problem of bad taste, losing weight etc, not dealing with the reflux means I have got very sore throats which have sometimes led to throat infections. Spoke :to my GP about my concerns recently and she more or less said ‘What you need you need’.

I had a camera down the throat investigation in 2015 and they found I had a hiatus hernia and heliobacter pylori. Was treated for the latter. The hernia must have been there for some time without causing any serious problems but I believe the radiotherapy damaged my oesophagus and made it more sensitive.

You may find Ranitidine works for you or maybe a short course of a PPI will give you a diagnosis. It can be hard to come off it again because of the rebound effect but many can do it gradually by moving to Ranitidine every other day. Hope this helps!

[Mstiles in reply to Rache]

Thanks Rache. It helps to hear from one who has experience as it seems doctors just want to write prescriptions and that’s it.

[HeronNS in reply to Mstiles]

One of the issues with PPIs is they can lead to bone thinning and eventually osteoporosis if taken long term. They are not really designed for long term use although some doctors use them that way. But in the short term if they work, why not?

Also try consuming more fermented foods to help balance your microbiome.

[Mstiles in reply to HeronNS]

Thanks Heron. I’ll try fermented foods.

[Janstr]

Are you also taking Alendronic Acid for osteoporosis?

I'm asking because I started get acid reflux about a month go, so bad that I was having problems sleeping. I noticed that the problem was a lot worse on my AA days & at the same time bought a book Acid Reflux Diet for Dummies. Based on this book, as well as my own findings for AA

1.I stopped taking the AA for 2 weeks & now stand for 1 hour instead of the recommended 30 mins after taking it & before eating or drinking.

2. For breakfast that day I have a yogurt smoothie

3. I now sleep with 2 pillows

4. Sleep on your left side rather than right

5 don't lie down for 3 hours after eating

6. Some foods can be triggers ( different for different people). The book lists caffeine, chocolate, citrus, canned foods, alcohol, red meat, fried food, spices ( chilli is a trigger for me), mint ( which may account for your toothpaste reaction), raw garlic, raw onion, tomatoes a s possibilities

7. Some medications can cause the problem.

[Rache in reply to Janstr]

Thats a useful list. Have tried/am trying most of the above but unfortunately without much success. Was told about caffeine initially after camera procedure but only have coffee in the morning and don't want to give up every small pleasure in life 🙁 I think Mstiles has been trying most of them too.

[Mstiles in reply to Janstr]

Yes thanks for your detailed list, these have helped with acid reflux

[anutycrixp]

when I started with this P.M.R and subsequent steroid treatment my gp automatically prescribed omeprazol {p.p.i] to protect the stomach which is fine as it also stopped acid reflux [which causes sore throat and nasty mouth etc]A relative also taking steroids for a different condition also is prescribed omeprazol. Perhaps best to stop chasing round looking for remedies and get dental check and talk to your doctor..find out what is actually causing this! best wishes and hope you get it sorted>

[Mstiles in reply to anutycrixp]

Yes, will do. Thank you

[Spanky2019]

I have multiple gastroenterology issues. I feel like I should be an expert at dealing with all the related issues by now including bad taste - mine has been salty taste 24/7 for 5 years. Switched from omoeprazole to dexilant (60 mg/day) recently. Dexilant, though expensive works better for me. Also, cutting out sugar has helped. Though still working on old, bad food desires, I think the "clean eating" theory is helpful. Wish I would have taken reflux & diet in my young years seriously and not over indulged in coca cola for decades. Good luck to you.

[Mstiles in reply to Spanky2019]

I hear you on “bad food desires”!, hard to overcome sometimes, it’s a work in progress.