Reporting back from Dr after tongue necrosis

[potterylady]

So, my Rheumatologist looked at the brown and black areas on my tongue (way in back) and she said it is very rare. She had one patient that had it before, I think this was only her second time seeing it. Then she said that maybe it's a yeast infection. But as far as I know yeast infections are white or yellow, not brown and black. But she prescribed some yeast medicine and I will use it and hope that it's not necrosis!! She also said I need an endoscopy to make sure it's not all down my throat. Tomorrow I have 3 different scans--bone density, torso CT with contrast dye, and abdomen CT with contrast dye. I have to fast for 4 hours prior, so the steroids will be eating my stomach alive. I find that I have to drink a lot of water and keep my stomach full to keep from having stomach pain from the steroids.

Thank you for being there, I appreciate your knowledge and support.

Jill

[Grammy80]

Hi, I hope some of the more educated gals come on with some research material. Not having heard of this, I looked it up and 'it is a rare side effect of GCA or Vasculitis'. I don't want to frighten you but I'd seek another opinion. Is there a teaching hospital near you?

My doctor poo-pooed my swollen 'glands, hoarseness and choking early in the year. Even after it being recommended I have a biopsy of my thryroid in 2020, it wasn't done. I was on too much pred to know the day. I share this to encourage you to get a second opinion in a timely manner.

Now I'm dealing with a large mass impinging on my trachea and vocal chords. I'd like to see you pursue this~!💗😛💗

[powerwalk]

Good luck with your tests. Keep us posted.

[PMRpro Ambassador]

You could take all or some of your pred the night before after dinner so there is food there, If you take some before bed - take the rest as soon as you can.

I echo Grammy's warning - if she is passing it off as "it's very rare" or "maybe it is yeast" I wouldn't be leaving it there, I would be seeking another opinion. Being very rare doesn't mean you haven't drawn the short straw!

[DorsetLady PMRGCAuk volunteer]

Agree with others, this needs following up -it may be rare (as studies say) but that doesn’t mean it can’t happen…