Ongoing toe infection

[Beachscene]

my partner has ET Jak2 MPL on Hydrea. He has had an ulcerated toe since December 2022. 8 courses of antibiotics still not healing. Now being sent to a bone specialist and infectious disease specialist. Anyone else have problems with wounds not healing.

[Mirror368]

Hydroxyurea has been known to cause skin cancers. Have they biopsiedit?

[Beachscene in reply to Mirror368]

Thankyou

[hunter5582]

Vascular ulcerations of the extremities are a well known serious adverse effect from hydroxyurea. This adverse effect is considered to be a clear indication for discontinuation of the drug. That information is available from a variety of sources.

Long-term treatment with hydroxyurea is associated with painful skin ulcers, aphthous ulcers, non-ulcerative toxicity with erythema, and skin infiltration.[17] Rarely, long-term therapy with hydroxyurea is associated with gangrene of the toes and digits.[18][19] The recommendation is to discontinue the drug. ncbi.nlm.nih.gov/books/NBK5....

Potentially severe cutaneous vasculitic toxicities (e.g., vasculitic ulcerations, gangrene) reported in patients with myeloproliferative disorders; reported most often in patients with a history of, or concomitantly receiving, interferon therapy. If cutaneous vasculitic ulcerations occur, discontinue hydroxyurea therapy and initiate alternative cytoreductive therapy as indicated. drugs.com/monograph/hydroxy...

It is unlikely a HU ulceration will heal while still on HU. There is a risk that the ulcer could turn gangrenous. Your partner's care team should have already discontinued the HU as this is the standard protocol for this situation.

Suggest that your partner consult with a MPN Specialist about next steps ASAP. There are other treatment options that should be considered. mpnforum.com/list-hem./

Wishing you both all the best.

[Beachscene in reply to hunter5582]

Thankyou.

[Otterfield]

I had a series of bad toe infections about 12 years ago, mainly the toenail, but also the surrounding skin. I had several courses of antibiotics and my haematologist took me off Hydroxycarbamide for a few weeks, which made no difference. My feet were also swollen, which I felt was pulling on my skin preventing healing. In desperation I bought a book about fluid retention and tried eliminating different foods. When I stopped eating wheat, my feet were back to normal size within days and my infections healed after about 2 weeks.

I'm not offering advice here, but just sharing my experience. I now eat some wheat with no problem.

[Beachscene in reply to Otterfield]

Thankyou

[socrates_8]

There are unfortunately many stories out there about people's wounds NOT healing after until after the cessation from taking HU...

If you partner is taking HU, perhaps suggest to their MPN Specialist that a change of Med's might be advantageous...

Best wishes

Steve

(Sydney)

[Beachscene in reply to socrates_8]

Thankyou Steve

[lizzziep]

I had this on hydroxy, they didn’t heal until I came off it and went on to Anagrelide. It was a long time before doctors admitted it was hydroxy causing it. In fact not until dermatologist investigated. Hope all goes well.

[Beachscene in reply to lizzziep]

Thankyou