Mouth ulcers: Hi all, I wasted my time last Tues. I... - PMRGCAuk

PMRGCAuk

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Mouth ulcers

loomweaver profile image
19 Replies

Hi all, I wasted my time last Tues. I didn't get to speak with the Rhuemi. but now have another appointment with him next Tues 15th at 1.30pm. will let you all know how I get on.

has anybody else had trouble with mouth ulcers, is it a side affect with predisolone? have at last got my blood sugar levels better am now on Metformin, which seems to be working.

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loomweaver
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19 Replies
Sophiestree profile image
Sophiestree

Are you in the UK?I get a fair amount of mouth ulcers/sore mouth and use aloclair plus spray. I tend to spray it at night before I go to sleep to give it a better chance to work.

I also heard fresh pineapple juice is good, but fresh, not a carton or tin.

loomweaver profile image
loomweaver in reply toSophiestree

Thank you for advise,

Bachblues profile image
Bachblues

I get them quite a lot too. But don’t do anything about it. They seem to come in phases - more like blood blisters really.

loomweaver profile image
loomweaver in reply toBachblues

Thank you for advice,

Megams profile image
Megams

~If I develop a mouth ulcer it tells me I am run down & need a vitamin "B" boost along with pacing myself a little more. Rarely eat red meat or much meat for that matter so make an effort to consume a little.

loomweaver profile image
loomweaver in reply toMegams

Thank you for advice, I think I am run down.

Megams profile image
Megams in reply toloomweaver

~Forgot to mention to rinse with warm boiled water + small amount of salt ~

loomweaver profile image
loomweaver in reply toMegams

Thank you megams, I have been doing that, and they are better today.

PMRpro profile image
PMRproAmbassador

I have never heard of mouth ulcers being associated with PMR/GCA and haven't heard people linking it with them being on pred. However - pred makes you more likely to develop mouth infections like thrush and they can lead to ulcers and so can poorly controlled blood sugar - so maybe that is a factor?

betterhealth.vic.gov.au/hea...

loomweaver profile image
loomweaver in reply toPMRpro

Thank you for advice, I have been having trouble controlling my blood sugar levels.

MrsNails profile image
MrsNails

My Mum used to get mouth ulcers from inhaled Steroids (for Asthma) so always drank a glass of water after taking her inhaler. Sometimes if we are ‘run down’ we can be prone to Ulcers, l find Bonjella very good, there is an adult version now.

Worth checking in with your Dentist, are you on any other Meds? My Dentist told me GTN Spray for Angina can cause swollen gums so is seeing me three monthly now to keep a check on them.

Regards

MrsN

loomweaver profile image
loomweaver in reply toMrsNails

Thank you for advice, I think I am run down.

loomweaver profile image
loomweaver

Thank you for advice, I think I am run down, as I have only just been diagnosed

Cofab2 profile image
Cofab2

Hi, rheumy had added methotrexate to my list, supposedly to help wean off pred. I developed the worst mouth ulcers ever, after some mouth rinses etc, I reread the side effects of methotrexate, that was one...stopped the methotrexate, and the ulcers healed. It has been a long journey with PMR, since 2015, I am down to 5 mg daily, and Dr says that’s probably rest of life. Below, I get flares...thanks to this forum, I don’t feel alone, as I did in the beginning. Good luck to you, I am in US

PMRpro profile image
PMRproAmbassador in reply toCofab2

If you were put onto methotrexate you should also have been put on folic acid at the same time as methotrexate interferes with folic acid in the body and it must be replaced as a supplement. How much you need varies a lot - patients take anything from 1mg a day, 5mg once a week to 5mg every day (except the methotrexate day). I really am a bit concerned at how rheumatologists of all medical groups are so unaware of the recommendations associated with the use of some of their medications!

MrsNails profile image
MrsNails in reply toPMRpro

It strikes me the Methotrexate is not as a ‘Considered’ Drug as it was (2014) l had to have blood tests & X-rays, which l believe in general are still carried out. You then had to Sign a Consent Form, were given a Methotrexate Record Book, with your doses & other Meds written in, Emergency Numbers, The Rheumy Nurses, l had a One to One with a Nurse to explain in detail about MTX its benefits & side effects.

There were considerably more Blood Tests done in 2014 than there are now.....

It’s benefits & toxicity have not changed, during the first major Lockdown, if you were stable the Monthly Blood Tests were dropped to Two Monthly & this now appears to be the ‘New Norm’.....

I’m very well aware of the ramifications of this drug but take it successfully.

Interestingly, following the Zoom Meeting last week, l am now convinced more than ever there is something else going on. My 2nd Consultant always felt that was the case......

PS l’m a 5mg Folic Acid 6 days a week girl, non on MTX Day ie Today.

PMRpro profile image
PMRproAmbassador in reply toMrsNails

I read something the other day that suggested that the recommendations still apply - but we know they seem to be ignored. I also read a study a bit back that suggests that most rheumies have no more idea about the effects of mtx on patients and how effective it really is than fly. Some third of patients stop because of adverse effects and another third it simply doesn't work for either short or long term, It is good, useful - but not that good for everyone.

Cofab2 profile image
Cofab2 in reply toPMRpro

Hi again, and I was also on folic acid at the same time. The ulcers healed once off methotrexate. Thank you for replying

Alchemy8 profile image
Alchemy8

I had mouth infections before PMR and only fairly recently discovered Neem Toothpaste and Neem Mouthwash (Theraneem Naturals). Both can be bought online from Baldwins the herbalist. Made a difference. Let's keep off Big Pharma where we can!

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