Transplant: tongue blisters

Posted by hello1234 @hello1234, Aug 16, 2021

Hi all,
I am a one year post kidney transplant patient. I take Cellcept and Tacronlimis. Just noticed a small cluster of tongue blisters. I was having dinner and I thought the sensation may be that I bit my tongue, but when I checked the mirror I saw a small cluster of blisters. Is this a reaction to one of our meds, an infection, or something else? Anyone experience this and how concerned should I be? Thank you!

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Hi, How are the blisters today? Are there more of them? Do they burn or feel sore? Could they be a cluster of elevated tastebuds irritated by something you’ve eaten? Are they on the top or side of the tongue?
LOL Nosy, aren’t I? But it might help to have more of description of how they look and feel to get to the bottom of the cause.

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@loribmt

Hi, How are the blisters today? Are there more of them? Do they burn or feel sore? Could they be a cluster of elevated tastebuds irritated by something you’ve eaten? Are they on the top or side of the tongue?
LOL Nosy, aren’t I? But it might help to have more of description of how they look and feel to get to the bottom of the cause.

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Hi @loribmt I think you are a genius and should have gone to medical school with all of your diagnostic skills! I think you may be correct about the irritated taste buds. It's a little patch on the top of my tongue in the front. It doesn't hurt unless I am eating something a little hot or spicy, it hasn't spread and it seems to be improving. I think I will take a deep breath and calm myself. If it does spread or become painful I will definitely call my transplant team. Thank you so much for calming me!… I have a question. After one year, when you are transitioned to your local nephrologist or hepatologist, when should you call the Transplant Team for questions? Which questions go to your local doctor and which go to transplant? How do you decide? Thank you again Lori for always being there for me!!!

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@hello1234, While we wait for other transplant members to share their thoughts based on their experiences, I want to introduce you to the Mayo Clinic Transplant blog. The Newsfeed consists of articles from the Mayo Clinic team.
https://connect.mayoclinic.org/blog/transplant/
Here are two to get you started:
Could your tongue blisters be a side effect of one of your meds?
-Watching For and Managing Side Effects –
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
Who should you go to for follow-up questions?
-Transplant Team or Local Provider: Who Do I Call for Medical Advice?
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/transplant-team-or-local-provider-who-do-i-call-for-medical-advice/
What is something helpful that you learned after reading one of these Newsfeeds?

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@rosemarya

@hello1234, While we wait for other transplant members to share their thoughts based on their experiences, I want to introduce you to the Mayo Clinic Transplant blog. The Newsfeed consists of articles from the Mayo Clinic team.
https://connect.mayoclinic.org/blog/transplant/
Here are two to get you started:
Could your tongue blisters be a side effect of one of your meds?
-Watching For and Managing Side Effects –
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects/
Who should you go to for follow-up questions?
-Transplant Team or Local Provider: Who Do I Call for Medical Advice?
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/transplant-team-or-local-provider-who-do-i-call-for-medical-advice/
What is something helpful that you learned after reading one of these Newsfeeds?

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Wow, these links are awesome! Thanks so much @rosemarya …this information is EXACTLY what I needed to read on when to call my transplant team moving forward! I am very happy that I asked the question on Mayo Connect!

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@hello1234

Hi @loribmt I think you are a genius and should have gone to medical school with all of your diagnostic skills! I think you may be correct about the irritated taste buds. It's a little patch on the top of my tongue in the front. It doesn't hurt unless I am eating something a little hot or spicy, it hasn't spread and it seems to be improving. I think I will take a deep breath and calm myself. If it does spread or become painful I will definitely call my transplant team. Thank you so much for calming me!… I have a question. After one year, when you are transitioned to your local nephrologist or hepatologist, when should you call the Transplant Team for questions? Which questions go to your local doctor and which go to transplant? How do you decide? Thank you again Lori for always being there for me!!!

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Genius is maybe a bit too big for me to handle. 😂 But I’m happy that I can help ease your fears a bit. I have a great deal of dental education behind me and now a lot of education by immersion in the world of AML and stem cell transplants.

While I didn’t have a liver or kidney transplant, we do share a few of the same medications. But our needs might differ with when to call on the transplant team. @rosemarya gave you some great information more current for your situation.

As for your tongue. It could be a little patch of what’s called geographic tongue. Sounds awful but it’s benign, harmless, usually painless and generally goes away on its own. For the first time ever, I’m dealing with that right now. Doesn’t hurt at all but I felt an area on my tongue a couple weeks ago that didn’t feel normal.
At first I thought I must have bitten the side of my tongue in my sleep but that would have hurt! LOL It’s sensitive to acidic or salty foods. It’s been 3 weeks it’s now disappearing with no help from me. So I just avoid anything that irritates my tongue, rinse my mouth well after brushing so the toothpaste doesn’t irritate my mouth. And every night after my last brushing for the day I douse my toothbrush with a little 70% alcohol to kill germs. I’ve done that since day one with Chemo/transplant.

And of course, an actual visit to your dentist is your best bet!
Have you had a dental exam since your transplant?

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@loribmt

Genius is maybe a bit too big for me to handle. 😂 But I’m happy that I can help ease your fears a bit. I have a great deal of dental education behind me and now a lot of education by immersion in the world of AML and stem cell transplants.

While I didn’t have a liver or kidney transplant, we do share a few of the same medications. But our needs might differ with when to call on the transplant team. @rosemarya gave you some great information more current for your situation.

As for your tongue. It could be a little patch of what’s called geographic tongue. Sounds awful but it’s benign, harmless, usually painless and generally goes away on its own. For the first time ever, I’m dealing with that right now. Doesn’t hurt at all but I felt an area on my tongue a couple weeks ago that didn’t feel normal.
At first I thought I must have bitten the side of my tongue in my sleep but that would have hurt! LOL It’s sensitive to acidic or salty foods. It’s been 3 weeks it’s now disappearing with no help from me. So I just avoid anything that irritates my tongue, rinse my mouth well after brushing so the toothpaste doesn’t irritate my mouth. And every night after my last brushing for the day I douse my toothbrush with a little 70% alcohol to kill germs. I’ve done that since day one with Chemo/transplant.

And of course, an actual visit to your dentist is your best bet!
Have you had a dental exam since your transplant?

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@loribmt thank you for all your excellent advice!. (I thought you may have some dental education since you are so knowledgeable). I go to the dentist every 3 months for my cleanings. Hopefully, this event will be long gone before my upcoming appointment. If not, I will definitely make an appointment. Do you think the dentist or my nephrologist would be best? If it's a side effect from Cellcept or Tac, I assume my doc would like best. But I really think it's probably a benign reaction to something I ate or I irritated my tongue. I am on the road this week and I brought a travel size toothpaste that's a different brand than my normal brand. I think maybe it irritated my tongue. Maybe it's too old and the ingredients expired. Again, thank you @loribmt and @rosemarya for always being there for me!

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@hello1234

@loribmt thank you for all your excellent advice!. (I thought you may have some dental education since you are so knowledgeable). I go to the dentist every 3 months for my cleanings. Hopefully, this event will be long gone before my upcoming appointment. If not, I will definitely make an appointment. Do you think the dentist or my nephrologist would be best? If it's a side effect from Cellcept or Tac, I assume my doc would like best. But I really think it's probably a benign reaction to something I ate or I irritated my tongue. I am on the road this week and I brought a travel size toothpaste that's a different brand than my normal brand. I think maybe it irritated my tongue. Maybe it's too old and the ingredients expired. Again, thank you @loribmt and @rosemarya for always being there for me!

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Well, my crazy transplant team joke about wanting to be told if I have a hangnail that doesn’t look right…they want to know first! LOL. But mine are more concerned with Graft Vs Host Disease which isn’t a concern for your transplant.

So you could just drop a note on your patient portal to your transplant team. They document these little items to tuck away for later. It provides them a baseline/timeline at least for when and what.

You can also just keep a little diary of items like this that come up with dates, changes, what might have caused the reaction, that type of thing.
Since this seems like minor irritation, in my opinion I’d just do a wait and see. Since you visit your dentist regularly every three months you could wait and just bring it up then. Certainly if things don’t improve or become worse such as inflamed, extremely sore…then just tell your team and still go to the dentist. I found that my team works closely with any of my medical providers back home.

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@loribmt

Well, my crazy transplant team joke about wanting to be told if I have a hangnail that doesn’t look right…they want to know first! LOL. But mine are more concerned with Graft Vs Host Disease which isn’t a concern for your transplant.

So you could just drop a note on your patient portal to your transplant team. They document these little items to tuck away for later. It provides them a baseline/timeline at least for when and what.

You can also just keep a little diary of items like this that come up with dates, changes, what might have caused the reaction, that type of thing.
Since this seems like minor irritation, in my opinion I’d just do a wait and see. Since you visit your dentist regularly every three months you could wait and just bring it up then. Certainly if things don’t improve or become worse such as inflamed, extremely sore…then just tell your team and still go to the dentist. I found that my team works closely with any of my medical providers back home.

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Excellent advice @loribmt (and I like your transplant team's joke about the hangnail!) . Speaking about hangnails, do you think a manicure at a reputable, clean salon would be an okay thing to do? I wouldn't do it during covid, but I would like your thoughts for the future!

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@hello1234

Excellent advice @loribmt (and I like your transplant team's joke about the hangnail!) . Speaking about hangnails, do you think a manicure at a reputable, clean salon would be an okay thing to do? I wouldn't do it during covid, but I would like your thoughts for the future!

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Oh man…you love to ask the toughies!! LOL. I would say if it’s a reputable place and you have confidence in their sanitation and sterilization then maybe??

Honestly, I avoid those places like the plague. Anytime the cuticle is removed there is the opening for bacteria. At this time, it’s on my no-no list along with acupuncture which is killing me!!! I miss my sessions.

But my gosh, so many of my friends who are immuno compromised have weekly mani-pedi’s and do just fine. My advice is to be mindful of sterilization. I have one friend who purchased her own pack of instruments and has them sterilized and used only for her. Little chance of cross contamination that way. Just a thought…

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@loribmt

Oh man…you love to ask the toughies!! LOL. I would say if it’s a reputable place and you have confidence in their sanitation and sterilization then maybe??

Honestly, I avoid those places like the plague. Anytime the cuticle is removed there is the opening for bacteria. At this time, it’s on my no-no list along with acupuncture which is killing me!!! I miss my sessions.

But my gosh, so many of my friends who are immuno compromised have weekly mani-pedi’s and do just fine. My advice is to be mindful of sterilization. I have one friend who purchased her own pack of instruments and has them sterilized and used only for her. Little chance of cross contamination that way. Just a thought…

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Good tip @loribmt on buying my own tools for the manicurist! Also, I know you are used to the highly sophisticated and complex questions, but every once in a while you need a softball question…like "can I get a manicure?". 🙂 Love your kindness and your sense of humor! Thank you for all of it!

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@hello1234

Good tip @loribmt on buying my own tools for the manicurist! Also, I know you are used to the highly sophisticated and complex questions, but every once in a while you need a softball question…like "can I get a manicure?". 🙂 Love your kindness and your sense of humor! Thank you for all of it!

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🤗

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@loribmt

Oh man…you love to ask the toughies!! LOL. I would say if it’s a reputable place and you have confidence in their sanitation and sterilization then maybe??

Honestly, I avoid those places like the plague. Anytime the cuticle is removed there is the opening for bacteria. At this time, it’s on my no-no list along with acupuncture which is killing me!!! I miss my sessions.

But my gosh, so many of my friends who are immuno compromised have weekly mani-pedi’s and do just fine. My advice is to be mindful of sterilization. I have one friend who purchased her own pack of instruments and has them sterilized and used only for her. Little chance of cross contamination that way. Just a thought…

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Hah! Sorry @hello1234, but I’m with Lori on this one. I know there are reputable salons out there, but many don’t change the feet soaking water, sterilize their instruments, etc. and, you’re relying a lot on people who are often underpaid, make their money on commission, etc.

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