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
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LizMitchell
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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.
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!
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!
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.
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!
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!
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.
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?
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!
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.
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.
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! 🤣
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!
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.
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!
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.....
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?
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.
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)
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.
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