Painful mouth from steroidal prevente... - Asthma UK communi...

Asthma UK community forum

18,614 members22,796 posts

Painful mouth from steroidal preventer. Need help please!

Spoonielady profile image

My gp has historically had me on clenil and symbicort at different times. Both of these caused persistent and painful thrush even though I use a spacer and I immediately rinse out my mouth. A month ago I was placed on fostair to see if it would have less side effects. It's been worse. I have no thrush or infection but my mouth and throat are so painful and raw. The roof of my mouth bleeds when I brush my teeth. I can only eat soft foods. It is painful to talk as well. It feels like it is actually harder to breathe. Kind of like my airway is swollen. I am relying on my reliever inhaler for the last two days as I stopped the fostair. I am going to ring up my gp practice to let them know. Does anyone know if there is a preventer inhaler without steroids? I'm at my wits end. Thank you in advance!

13 Replies

This sounds like a severe case of thrush that appears to have been left untreated by your doctor? It can be treated, the earlier the better. The pain and breathing is probably due to the thrush spreading to your windpipe and could be affecting your voice box.

At this stage I'm not sure how you can keep using steroids until the thrush is completely treated. And it doesn't sound like over the counter treatments would be effective at this stage, but prescribed anti fungal meds may be required. At the moment the NHS are directing patients to pharmacies so you may have to be assertive to get a face to face appointment with your GP.

But what to take in the meantime for your asthma? Maybe a call to Asthma UK before you talk to your GP. The GP may not have the experience to prescribe a good alternative to inhaled steroids and they may need to seek recommendations from an asthma specialist. Asthma UK can definitely give good advice on this matter to help you decide how to proceed.

asthma.org.uk/about/contact/

Wishing you all the best.

Spoonielady profile image
Spoonielady in reply to Poobah

My gp did a culture two weeks ago. The result, she said was negative. She did remark how sore my mouth looked. Thank you for the advice. I will contact Asthma UK.

Spoonielady profile image
Spoonielady in reply to Poobah

Also, we treated me with antifungal prior to visit and it never helped.

I think Poobah has made some interesting comments. You may well get some assistance from your pharmacist.In relation to oral thrush I never found prescribed medications helped. However my gp suggested swilling salt water and I found that a tremendous help and sorted the issue. You may find that initially too painful but may be worth a try?

Spoonielady profile image
Spoonielady in reply to Bevvy

Thank you for the advice. I have been rinsing and gargling with salt water two times a day. It does help but doesn't last long.

Bevvy profile image
Bevvy in reply to Spoonielady

It sounds like thrush or infection deeply routed. If helping I would gargle with salt water more often than twice a day. So long as careful not to swallow isn’t going to hurt.

Spoonielady profile image
Spoonielady in reply to Bevvy

Will do and thank you again!

I forgot to say that I have Sjrogens syndrome with causes dry mouth and eyes so I'm sure it has some role to play in all of this. I have an appointment next Tuesday with a nurse so we shall see what happens. When I spoke to her on the phone she was dumbfounded and never heard of a case like mine. I've gone through three types of maintenance inhalers and rinse mouth extremely well and still have this happening.

Poobah profile image
Poobah in reply to Spoonielady

That makes a huge difference, I believe, as you don't have sufficient saliva to do the job in protecting the hard and soft tissues in the mouth. This is definitely a factor in your current oral challenges and I'm glad that you're seeing a nurse on Tuesday to review things.

There are meds that can be prescribed to help you produce more saliva and tears. And there are moisturisers for your mouth and eyes too. Definitely discuss your rinsing with salt water as this may be good for thrush but is it good if you have Sjrogen? Could it be making things worse? If the nurse doesn't know then say that you need to know and happy that they pursue more information for you.

I would stress with the nurse the need to continue steroid treatment for your asthma but that it is aggravating your mouth to the point that it's bleeding when you brush your teeth and detail the extent of your other symptoms. The nurse may not have a solution then and there, but assert that you hope that they can research a solution for you and expect a follow up as your asthma treatment is equally important.

Basically you want to leave the appointment knowing that the issue is being addressed and that a follow up is certain, either with the nurse or doctor, if necessary.

No doubt you've already read this or something similar: nhs.uk/conditions/sjogrens-...

Good luck on Tuesday.

Spoonielady profile image
Spoonielady in reply to Poobah

Thank you for such a thorough reply. I will assert to the nurse the issue, including rinsing with salt water, whether good or bad among how important it is that I stay on a steroidal preventer. If she is uncertain, I will express that I'd be happy if they could research it. It's extremely painful and I can barely speak so this is important that I can also breathe. Thank you for the NHS link and I have read this before. Sjogrens really never affected me till lately so I am glad for that. I have also booked in to see my ophthalmologist next month for dry eyes.

Many many thanks to all of you!

Poobah profile image
Poobah in reply to Spoonielady

Wishing you the very best. Keep us all posted on how you get on.

How distressing for you. It sounds awful and as nothing seems to be helping I believe you should insist on a referral to an Ear Nose and Throat consultant. Your problem seems to be beyond the remit of your GP and nurse. Sadly though you may have a long wait unless you can ask for a private referral and can afford it. I do hope you get some relief very soon. In the meantime have you tried Bonjela? All the best!

Unfortunately Bonjela didn't really help. Thank you for your advice.

You may also like...