Ankle ulcers and Hydroxyurea

[MagicMountaineer]

I've recently been afflicted with painful ulcers on the inner ankle bone of one foot with surrounding nerve pain. I read this can be a symptom of taking HU long term. Anyone else experienced this and has any treatment helped you?

[hunter5582]

These skin ulcers are a significant HU adverse effect. These wounds will often not heal without discontinuing the HU, putting you at risk for gangrene. These ulcers are considered a clear indicator for the need to discontinue HU. Please contact your MPN care team ASAP to arrange for an alternate treatment plan.

[lizzziep]

Unfortunately ulcers are a common side effect of hu, I got them on my feet, after 3 years without problems on hu, they wouldn’t heal until I came off it, I was put on Anagrelide which I took for quite a few years without problems but progessed to MF so now on Momelotinib and hu again but keeping an eye out for skin problems.

[Balenciaga]

I'm currently suffering from them & the pain is appalling even with opiates! I had been on HU for 30 years & when the ulcers started on my ankle (I felt them ping up & they looked like bullet holes at first but then enlarged), back in January, my haematologist said the HU was causing them & I had to stop the HU immediately; I am now on Interferon injections but have only had 2 thus far. I have been seeing the GP's nurse for all these weeks & she has been dressing the ulcers, & last week started compression bandages. As I say, the pain is appalling, & I wouldn't wish it on anyone! I have been taking Oxycontin tablets & liquid for weeks now, which must take the edge off but there have been times where I've been screaming with the pain &, as I can hardly walk, I've been housebound for all this time, apart from going to see the nurse. Basically, they told me you have to get them treated until they have gone & never take HU again. Also if you can get to see a Tissue Viability Nurse, apparently that's best, but the ones in my area have refused to see me! Very best of luck to you.

[kitttycat]

Hi I saw your posting, I had horrible ulcers on my leg from scratch from a box which caused infection and the HU wouldn't allow them to heal and they spread. I ended up getting treatment for a year and half. The dermatologists weren't very good and I was finally sent to the wound center at the hospital. It was all about using compression (wearing strong tubi grips) and different treatment. (disinfectant) I went every couple months for 10 months and also to the clinic 3 x week for year and half. I am cured but must use compression hosiery. This is just my story but I thought it could be interesting to pass along. Best wished.

[Pauline43]

I have every sympathy for you. I had an ulcer on the outside of my ankle after taking HU for 10 years. HU was stopped immediately and I was given Ruxolitinib instead. The pain from the ulcer was absolutely dreadful and it took months to heal, with regular visits to the nurse, compression stockings and a cover to use in the shower. I fully agree with Balenciaga about the pain and total disruption of normal life and sleep. I wish you both a speedy recovery

Pauline

[sbs_patient]

I got ulcers on the backs of my hands after my dose of HU was increased to 1000 mg.day. My MPN specialist started me on Jakafi in 2022 and all has gone well since then.

[Mufftreacs]

ulcers