Bitter Taste In Mouth

[LizMitchell]

I have had a persistent bitter taste in my mouth since the end of December and the only respite that I get from it is either when I am sleeping, eating or drinking! It’s so bad that it is making me feel quite unwell! I am doing everything that has been advised eg drinking lots of water, brushing teeth with mouthwash 2-3 times during the day as well as overdosing on mints! My GP initially treated me for Thrush on the back of a photo link, as there are no imminent surgery appointments and I am currently waiting for another telephone appointment on the 7th Feb!

I was just wondering if anyone here on this forum has experienced this, as there is information online to suggest that long term steroid use could be the cause? I definitely fall into the “long term” category as I have been taking steroids since July 2015! I am currently taking 4mg of Prednisolone each day, so not too bad plus 15mg Methotrexate once a week!

If steroids are causing this bitter taste in my mouth, what are your thoughts on going onto Hydrocortisone instead?

Best wishes to you all

[DorsetLady PMRGCAuk volunteer]

Hi,

Recent post in similar subject- might be helpful - and related posts as well -

healthunlocked.com/pmrgcauk...

[SnazzyD]

Did the thrush treatment work? Does it burn or is it purely taste?

Just some thoughts - Have you got any acid reflux going on? Did you have Covid just before it started? Have you had your teeth and gums checked? Do you have a dry mouth? Anything to see? Any pain anywhere in the head?

I would be wary of the mouthwash regime if it is medicated as it can mess up the oral flora and get rid of the good bacteria that help keep the a bad ones in balance and keep the thrush fungus at bay. If you are throwing in sugary mints, that’s fungus food.

I would have thought that if it was directly the Pred you would have had this before you got to 4mg which is on the low side. Being immunosuppressed by the Pred on previously higher doses and Methotrexate can predispose you to infections anywhere. Methotrexate can cause issues with taste too just on it’s own, it’s know for that.

[LizMitchell in reply to SnazzyD]

Hi Snazzy

Thank you for your response.

No, the Thrush treatment didn’t work! No it doesn’t burn, it’s simply a very bitter taste in the mouth!, nothing else! I have never had Covid despite my husband and daughter getting it a couple of times! I had a dental check up in November, although I do have an appointment tomorrow to see if anything has changed since! No pain!

I do agree that mouthwash isn’t great for the oral flora, so will just brush my teeth a couple of times during the day!

I agree that it does seem unlikely it is the Prednisolone now that it is a low dose, so just clutching at straws really! Hopefully my GP can suggest something other than Thrush so far, but it could be one of those things that takes a lot of investigation to identify!

[LizMitchell in reply to SnazzyD]

Forgot to respond, but no I don’t have symptoms of Acid Reflux!

[PMRpro Ambassador in reply to LizMitchell]

You don't get symptoms with silent reflux ...

[LizMitchell in reply to PMRpro]

That’s interesting, so maybe that is a possibility!

[Maxgate2 in reply to SnazzyD]

Try Bicarbonate of Soda. Put 2 teaspoons of it into a little dish add a little water and mix to a slightly runny paste. With a toothbrush brush, gently brush the inside of your mouth and your tongue. Try it two to three times a day. This really helped me!

[LizMitchell in reply to Maxgate2]

Thank you so much, I will try it today!

[PMRpro Ambassador]

Did anything change around Christmas - new medication for anything for example? Or even a change of manufacturer for a medication?

In terms of longterm pred, I've been on it for heading for 15 years and I can't say it has caused me any taste problems. Like Snazzy, if it was going to be pred, I'd have expected it at higher doses.

I don't think over-use of mouthwash is a good idea - especially certain brands. A saline mouth rinse might be better. Anything that upset the microbiome in the mouth is not always helpful. Have you tried rinsing your mouth with yoghurt or kefir drinks - low sugar ones preferably.

What SORT of unpleasant taste is it?

[LizMitchell in reply to PMRpro]

No, nothing changed around Christmas! At least it didn’t ruin that 😊 No change of manufacture of Prednisolone, although there was for MTX last year!

I will definitely stop mouth wash and will try a saline wash instead! I will revert to sugar free mints! Yoghurt and Kefir drinks also a good idea, thank you!

I can only describe the taste as really bitter and the sort of taste you would get in your mouth from a chemical, it’s really unpleasant!

[PMRpro Ambassador in reply to LizMitchell]

Metallic?

[LizMitchell in reply to PMRpro]

Yes I would say it is!

[SnazzyD in reply to LizMitchell]

Is the taste from the saliva or in the mouth if you can tell?

[LizMitchell in reply to SnazzyD]

It is really difficult to tell! Not helpful I know, but I have tried to identify the source of the bitter taste but it’s inconclusive!

[herdysheep]

Prior to pmr and oral pred I had steroid mouthwash for lichen planus which certainly gave a bitter, metallic taste. Have been on pred since 2012 and have not experienced it since. Oral pred has kept LP nicely controlled!

[LizMitchell in reply to herdysheep]

That’s interesting, thank you

[Rache]

I had a similar experience and my GP correctly diagnosed it as Silent Reflux. I was surprised as I had no obvious acid reflux symptoms. Lansoprazole, a PPI, got rid of the symptoms completely. I ended up taking it for quite a long time. Hope this helps.

[LizMitchell in reply to Rache]

That really does help, thank you!

How bad was the bitter taste in your mouth?

When it was clear that I didn’t have Thrush I was given a PPI by my GP! I have been taking it for almost 2 weeks now, so I really hope that it works! Can I please ask you how long you were taking your PPI before it started to relieve your symptoms?

[Rache]

I’m sorry I can’t remember exactly but I think it was fairly quick. Everything had tasted horrible, even my toothpaste. The only positive thing was that I lost some weight!

[LizMitchell in reply to Rache]

That’s really interesting, thank you so much 🙏

[Rache]

You’re welcome. Hope the PPI does the trick 🤞

[LizMitchell in reply to Rache]

Thank you

[SheffieldJane]

I have had this issue on-going. I was diagnosed with PMR in 2016 and GCA/LVV. I also have a tendency to a sore mouth and tongue. I found a pro-biotic mouth -wash in Australia that dealt with the problem that may have been thrush. Back in the U.K. I am seeking a similar product. Fingers crossed for one I found on line.

[LizMitchell in reply to SheffieldJane]

That’s really interesting to know, thank you. I will have a look online too!

[Louisa1840]

I experienced a horrible bitter taste when I had covid recently Liz. In fact it was the worst of the symptoms by far. That is obviously not your problem though.......I feel for you because it was very unpleasant.

[LizMitchell in reply to Louisa1840]

When the bitter taste started I did a Covid test, but it was negative! It’s over a month now and, as you say, it’s very unpleasant and extremely wearing! My husband, daughter and I are going on a long planned holiday to Arizona next week and I am extremely frustrated because it is going to really spoil it for me! I will just have to have a large supply of sugar free mints! 🤣

[Louisa1840 in reply to LizMitchell]

Hope you get the problem fixed before your holiday! You've got plenty of suggestions above.Isn't this forum wonderful?

Have a great time in Arizona .

I have a granddaughter studying at Flagstaff Uni.....

[LizMitchell in reply to Louisa1840]

Thank you, I hope so too!

I couldn’t agree with you more, this forum has been an invaluable support to me in the 8 long enduring years that I have had PMR & GCA, I don’t know what I would have done without it!

[Treetop33]

I've had that since mid November but then I've had Covid (it's difficult to test positive for Covid with the LFTs...high prop of false negatives). It tastes a bit like having an infection pouring from your gums. May be a phantom thing though as I have LC I may actually have an infection still.

[LizMitchell in reply to Treetop33]

Goodness, that is a long time to put up with a bitter taste in your mouth! I am finding it so unpleasant that it is actually making me feel quite unwell, it’s horrible!

[Treetop33 in reply to LizMitchell]

Pretty gross, yes. I'd talk to your doctor, but potentials are reflux, meds, or gums as a port of call. I hope it's not permanent!!

[LizMitchell in reply to Treetop33]

Thank you, I hope it’s not too!

[AshPen9]

I had a metallic taste for a long time, LizMitchell. It disappeared eventually, and no-one ever came to any conclusion about the cause, but I did discover due to other symptoms that I have silent reflux.....

[LizMitchell in reply to AshPen9]

Thank you so much for your response. I am very glad to hear that you are not suffering with this anymore! Can you recall how long you had it for? Suggestions of Silent Reflux has cropped up a few times, so maybe that’s what I have?

[AshPen9 in reply to LizMitchell]

It was probably a year or two. I did eventually decide that it might have been linked to silent reflux, having read up on it when I got other symptoms. As you say, a few people have mentioned it, so it might be worth considering that as a cause. I still have silent reflux as far as I know (got a weakness of lower oesophageal sphincter) but don't take anything except the occasional antacid. Often have a slightly sore throat and a bit hoarse in the morning, which I think is linked to it. Good luck with sorting it out.

[LizMitchell in reply to AshPen9]

It is definitely one to consider, I will mention it to my GP when I have a telephone appointment next week! Thank you

[cranberryt]

Maybe see a dentist and make sure there is nothing going on with your teeth? I had a failed filling once that resulted in constant strange taste in my mouth.

When I had oral thrush many years ago, one thing that helped was “pulling” coconut oil. (basically swishing it around and spitting it out)

[PMRpro Ambassador in reply to cranberryt]

I hadn't thought of that - but you are right, First place to look really - an old "silver" leaking filling can do it.

[LizMitchell in reply to cranberryt]

Thank you for the suggestions, much appreciated!

I had a dental check up in November and, just to make sure that there isn’t a new problem with my teeth, I have been back to my dentist today and all good with teeth and mouth, so I can tick that one off the list.

[nikilow79]

Hi, currently have this now! Did you get it cleared up?? Interested to see if anyone was diagnosed or what treatment helped.

[DorsetLady PMRGCAuk volunteer in reply to nikilow79]

As this post is a few months old, there are probably aren’t many following it. So you are likely to only get a reply from the originator or PMRpro and myself [as we follow all posts]. Or have a look at related posts.

Maybe an idea to start a new post…

[nikilow79 in reply to DorsetLady]

I see - I was trying to reply to the original post. Thanks for letting me know.

[DorsetLady PMRGCAuk volunteer in reply to nikilow79]

You have replied to original post…but as I said no everyone will be notified - whereas if you raise a new post they will.

If you aren’t sure how to do that have a look at this-

healthunlocked.com/pmrgcauk...

[nikilow79]

Hi, currently have this now! Did you get it cleared up?? Interested to see if anyone was diagnosed or what treatment helped.