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I have MDS and have been taking Lenalidomide for 2 and a half months. Does anyone else have a white coat on their tongue and tingling in their chin and or neck?

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Replies to "I have MDS and have been taking Lenalidomide for 2 and a half months. Does anyone..."

Hi @jamie14 I’ve not taken Revlimid (Lenalidomide) but I am familiar with being on meds that can weaken the immune system leaving us more susceptible to fungal infections such as Candida albicans, or thrush.
One of the first symptoms would be the white, kind of pasty film on the tongue and sometimes roof of mouth, cheeks.

Article on Thrush:
https://www.mayoclinic.org/diseases-conditions/oral-thrush/symptoms-causes/syc-20353533
There are myriad articles online to read for how to avoid and treat thrush. But basically, it helps to reduce sugar/starch intake. Brush your tongue gently several times per day to brush off the ‘fuzz’. What you see building up is actually fungal colonies. Brushing helps to get rid of it. Your tongue may get tender or sore. So be very gentle.

Follow up with warm salt (or salt and baking soda) rinses several times daily.
Also, pulling with organic coconut oil can be helpful.
(1 teaspoon or more of coconut oil, let melt over tongue and swish for 20 minutes in your mouth, on your cheeks, etc. Don’t swallow, but spit into a waste basket. The solidifying oil will clog your drain) The coconut oil has some anti fungal/anti bacterial properties, it also is soothing and it takes good. ☺️

Also, make sure you tell your doctor about your Thrush! They can order antifungal for you to take. My oral dermatologist ordered Clotrimazole troches for me. They’re just lozenges that melt over your tongue which kill the fungus. You can use them a couple times per day and don’t have to actually swallow the medication for it to work. Just let it melt slowly. Takes about 15 minutes. No taste to them.

But the first thing to do is to speak with your oncologist or their NP/PA to let them know about your potential side effects of thrush, and including the tingling in chin and neck. Have you mentioned these sided effects to your team?

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