Mouth issues after transplant

[Brightsky69]

Hello,
Ok...with both of my kidney transplants I've had mouth issues. With the 1st transplant I had bad overgrowth of my gums. That was taken care of. With my 2nd transplant I am now having issues with my tongue.  I have developed a sore spot right in the middle of my tongue. It’s not really painful unless I eat spicy foods or foods that are acidic. Also, it doesn't seem to be spreading at all.  My periodontist gave me a topical cream to use and I can't really tell if it's making a difference or not. He said if in two weeks I see no improvement then he wants to do a biopsy to see what might be causing it. He told me he doesn't think it's cancer because tongue cancers normally appear underneath the tongue and not on top. Right on top is the only place I am having an issue.
My kidney doc thinks it's related to the medications. Has anyone else run across this problem??

[Jelena]

Hi Brightsky69, sorry you are having these problems. My husband had to take Nystatin (they called it "swish and swallow) for a few months after the transplant. They told us that lots of meds could cause problems in your mouth. Were you getting anything like that? Hope this helps and you get rid of these annoyance soon!

[willowtreewren]

Yes, Carl had to do the swish and swallow for 6 weeks after his TX.

 

Aleta

[Chris]

I had the swish and swalow Nystatin and also was put on the lozengezes a couple years ago for a brief period when the transplant clinic noticed things I did not. I think it was called myclex.

[KarenInWA]

No one at my clinic has told me about a swish and swallow. I am on clotrimazole lozenges 4 x a day to prevent thrush.

KarenInWA

[rsudock]

I was thinking on the same lines as Chris and Karen...is it thrush? Maybe you need Myclex tabs or the swish and swallow stuff...I would talk to the transplant team before getting the biopsy and putting yourself at risk for infection....

xo,
R

[Brightsky69]

Last time I went for clinic they didn't seem to be concerned about it. They didn't give me anything. The doc did say it didn't look like thrush at all. That was about it.
I go to clinic on the 30th and I will ask again. I know the doctor I am seeing is very proactive almost too much. I bet his reaction will be MRI, CAT scan, Biopsy and a 3 day hospital stay. He is known for overkill type reactions.

[Chris]

Last time I went for clinic they didn't seem to be concerned about it. They didn't give me anything. The doc did say it didn't look like thrush at all. That was about it.
I go to clinic on the 30th and I will ask again. I know the doctor I am seeing is very proactive almost too much. I bet his reaction will be MRI, CAT scan, Biopsy and a 3 day hospital stay. He is known for overkill type reactions.

I kinda wish my transplant doctor was like that, but according to cariad he is no longer there and that is a good thing! I did not like him one bit

[Brightsky69]

chris - I agree he could be the type that just doesn't give a crap. Sometimes I think Dr. K worries more than me about how my kidney is doing. He is a good guy and is pretty much honest with me about everything, plus I like his accent...he's Russian. 

[Sax-O-Trix]

I have a terrible time with my tongue "burning" and being very sensitive post transplant.  I am 99% sure it is the Prednisone causing the problems because when I finally made it back down  to 5 mgs of Preds, the symptoms all but went away.  Unfortunately, I am back up to 20 mgs while dealing with my second acute rejection episode in five months.  Whenever I eat anything even remotely salty or spicy, my tongue hurts like heck,  my eyes water (talking tears running down my face) and my nose runs like a faucet.  It's rather annoying. I do have Nystatin swish and swallow on hand for the slight thrush that I seem to have, but I refuse  to swallow th stuff because the texture and flavor makes me gag, lol.  I have only used the Nystatin ia couple of times.

I hope you are able to find some relief!!!

[olivia]

Yay, someone else has these mouth issues too, I don't feel so crazy now. I have been getting sore on the inside of my cheeks whenever I eat anything spicy or tomato based too. Did not think to put transplant and mouth soreness together. Live and Learn. When I do get sore rinsing with warm water or mouthwash after eating helps after a couple of days. I cant tolerate the alcohol based mouth wash, it burns too much.  I like the Crest Pro Health rinse.
I also noticed when I eat anything salty, which is not often at all, I get red and sore on the corners of my mouth. Not sure what to do about that.
I would guess its the meds. Feels like my whole body is super sensitive since the kidney bean.

I have had actual sores in my mouth, very painful ones when my white blood cell count was too low also. But that was different than this soreness Ive been experiencing lately.
It is so nice to read these posts and not feel crazy because of these weird symptoms.
Olivia 

[olivia]

Oh, I forgot to mention, I am not on prednisone. I would guess the myfortic or prograf, since they seem to cause stomach and intestine issues, maybe those issues also travel to the mouth. Its all connected right?
I was on Nystatin for the first 3 months to prevent thrush.
Olivia

[Chris]

Olivia, have you seen a dentist about the trouble you have with tomato based, alcohol based products? Just curious before to rule something else out.

[Brightsky69]

I showed my tongue to my neph and he said to go ahead and have the biopsy done. He gave me some antibiotics to take beforehand. The biopsy is Wednesday. I hope it doesn’t hurt too much. Numb me up or something.    Not looking forward to it at all.

[olivia]

Sorry I didn't respond sooner, I do not have as much time as I would like to go on line to chat.
How did your biopsy go Brightsky? Did you get any results yet? Hope all went well and is well with you.

To answer your question Chris, I have seen a dentist a couple of months ago, but did not speak with him about mouth sensitivity. I'm thinking it i a side effect, which of course no one at Transplant will agree with.
I do have another upcoming dentist apt. I will speak to him about this mouth issue. Thanks for suggesting that.
 

[Brightsky69]

  Hey!

I did have the biopsy and surprisingly it didn’t hurt that bad. He worked quickly and I was numbed up really well….couldn’t feel a thing. They did make it sound like I would be in major pain after the numbing wore off. They gave me tramadol for pain but I didn’t even take it. It hurt a little to eat afterwards but it was only on one side of my tongue. I just took a Tylenol.  I ended up with 4 stitches which are supposed to dissolve, not all have yet.
The biopsy found no sign of cancer. It’s basically an ulcer. He gave me some oral rinse to use that seems to be helping. He also gave me another rinse to use if the other stuff doesn’t completely clear it up.
It’s all good.