There are soothing mouth washes out there and also the pharmacy is knowledgeable in advising which to use.
Good luck friend .!🙏🏻

When I was on HU, I experienced raw bleeding ulcers in the mouth, canker sores, and GI issues. The HU also caused what presented as leukoplakia. The surface of my tongue turned as white as snow. This continued even at 500mg every other day. I simply could not tolerate the HU. The issues did not resolve until after I discontinued the HU.

Fortunately, I have responded much better to the interferons, Pegasys then Besremi. The IFNs have been more effective and much easier to tolerate for me. Note that we are all different in how we respond to these medications.

You are on a very high dose of HU. Toxicity is simply to be expected at this dose. It may be that you are refractory to HU. Suggest that you review other options with a MPN Specialist. It is particularly important to get a second opinion from a MPN specialist if your existing hematologist does not have this level of MPN expertise. Here are two lists just in case you need them.

https://mpnforum.com/list-hem./
https://www.pvreporter.com/mpn-specialists-canc...

Wishing you all the best moving forward.

Ask your doctor for a prescription mouthwash

Yes, and thank you!

I have a prescription for Magic Mouthwash, which numbs everything it touches 😅, but haven’t needed it lately, thank goodness.

Thank you, Steve. I am very comfortable with my hematologist, tho we have not discussed trying a different medication. I am doing labs and seeing him or the NP monthly, at this point, so that can be up for discussion. I have tolerated the HU very well, and it has been effective in reducing first platelets and then hgb/hct, until this maximum dosage the past few months. I will keep an MPN specialist in mind.

On edit, I see there are 3 MPN specialists in Chicago, a trek for me.