Mucus and Mastocytosis

[Mothertay]

Hi, I am struggling with a build up of mucus in my throat that I can can’t clear.

Anyone else? And what do you find helps

Feels worst when I lie down in bed

[MadRed13]

Hi Mothertay, I am sorry that I have no answers I have had constant thick mucus in my throat for a very long time. I have had two explanations - one is that the reflux creates irritation that causes the mucus. I am on Famotidine and Esomeprazole but have a hiatus hernia that causes problems and still get breakthrough acid. I am very congested in my throat in the mornings after a build up of this mucus. The mucus is also apparently thicker because of the high doses of antihistamines I have to take. I cannot reduce these without other problems. Are you on any acid reducing medications?

[Mothertay in reply to MadRed13]

Thanks for responding. I don’t take any acid reducing medication but am taking anti histamines twice a day, that must be playing a part. Just been put onto an anti inflammatory diet and have been asked to cut out dairy for 4 weeks so will see if that makes a difference

[MadRed13 in reply to Mothertay]

Do you have either of SM or MCAS? I have SM and it is usual to be put on an H2 blocker like Famotidine, Cimetidine or similar.

[Mothertay in reply to MadRed13]

I have SM but don’t take either of those. I have sodium cromoglycate and loratadine. Will ask at my next appointment

[MadRed13 in reply to Mothertay]

Definitely worth asking.

[Bluebird_77 in reply to MadRed13]

I have just recently been diagnosed with cutaneous mastocytosis. I am on anti histamines Fexofenadine, and trying to follow a low histamine diet. My serum tryptase level is 13 , so it's important for my health to try and make sure the level doesn't rise too much. I also suffer with mucus, especially on waking in the morning. My first appointment with my haematologist, is not till next year, but maybe my GP could prescribe a medication to combat the mucus. Interesting to read everyone's posts, and realise there are many people out there, who are suffering far more than me.

[Jess-UKMasto Partner]

Good question. I agree that querying whether this is related to acid production and reflux is a worthwhile one. People can have ongoing coughs that turn out to be reflux rather than anything related to the throat or lungs. Hyperacidity in the stomach (and reflux with it) can be common in mastocytosis. Histamine is one of the chemicals that can trigger release of stomach acid. Mast cells release histamine... and that extra histamine binds with the stomach acid producing cells. That would be where I'd start, but of course it would be good to rule out other things and play with your H1 antihistamines you're already taking, if adding an H2 blocker or PPI doesn't help.

[floating_]

They added Carbocisteine for me and it helps. For context I'm already on Fexofenadine, Famotidine, Sodium Cromoglicate, Ketotifen, Lansoprazole and Xolair (and a bunch of other medication, some related to MCAS, some not); sometimes adjusting the previously mentioned medication doesn't work and you need a mucus thinner like Carbocisteine.

[MadRed13 in reply to floating_]

I have never heard of Carbocisteine, never been suggested for me - I will have to ask about it as soon as I get the chance. The mucus is so thick in the mornings especially. Thanks floating.