Tongue Necrosis with GCA!!

[potterylady]

Hello everyone,

I've only had PMR and GCA for 3 and a half months but my tongue is already affected. It's turning brown and disgusting! Has anyone else had this? Does it go away? What happens with this tongue death?!!

Yikes!

Jill

[DorsetLady PMRGCAuk volunteer]

it can be a rare manifestation of GCA, but should improve once you are on Pred, are you saying it hasn’t, or it’s got worse?

If that’s the case, then you need to talk to your doctor.

[potterylady in reply to DorsetLady]

I've been on 50mg of Prednisone for 3 months. It started after being on Prednisone. So the steroids aren't helping the tongue. I go to the Rheumatologist today. I'll see what she says. Thank you for responding so quickly.

[DorsetLady PMRGCAuk volunteer in reply to potterylady]

please let us know…:

[piglette]

This article mentions GCA. Good luck with the rheumatologist. Hope they sort things out. academic.oup.com/jscr/artic...

[PMRpro Ambassador]

It is a rare event. The trouble is, once there is a patch of necrosed tissue that doesn't recover. And it literally only needs a small area of cells to be affected and the surrounding area is affected over time. It was my husband's research field but I can't get the details now as he died last year.

You do need medical advice.

[potterylady]

I hope I don't lose my whole tongue!!! Scary stuff!

[Telian in reply to potterylady]

Really is scary stuff. How awful for you. Best wishes.

[Grammy80]

Yikes...today was a crazy day...so I've responded in all backward order...like the writer. Again, for the third time in about 30 minutes....Jill, keep us posted. 💗🙏🏻💗

[moonieboy9358]

My recommendation is to visit an oral surgeon and not a dentist. The oral surgeon should be able to diagnose what is going on. Also bring a list of your medications.

[potterylady in reply to moonieboy9358]

Great idea. Thank you!!!!!

[Amkoffee]

It could be black hairy tongue. Check out this article at the Mayo Clinic.

mayoclinic.org/diseases-con...

[potterylady in reply to Amkoffee]

OMG, I found some of this info late last night! I think you might be right! I hope you're right!! I read that prednisone can cause it.

[Amkoffee in reply to potterylady]

.at least there is a solution and it's not serious.

[67Blue]

Thinking of you, how scary for you. May your fears and other peoples suggestions be proven wrong.

[Karenjaninaz]

In the meantime use a salt water mouth rinse after eating and before bed. This will reduce bacteria. Although I never had necrosis, I had burning tongue and mouth. Using the salt/bicarbonate sachets(packets) from the McNeil sinus rinse product abolished that very quickly. Whenever, while working in hospital, we had a patient with a necrotic wound, it was irrigated with saline. Salt destroys the bacterial cell wall. Avoid alcohol based mouthwashes- they have shown to increase mouth cancers- as well as excessive drinking. Too harsh for the gums.

[potterylady]

Great info!!! I'll do it! Thank you so much!

[Nap1]

yes I have big tongue issues. Half the tongue is paralyzed. Also salivary glands died. Live in Florida. Cannot find rheumatologist or any other Doctor Who can tell me anything about what is happening to my mouth. My ESR is up to 115 and I have had GCA for 8 years. Up and down with the prednisone and the help of Actemra. Covid but the whole thing back. I was doing well on sex milligrams for my adrenals have much bigger problems now.