HU and foot ulcers

[Mufftreacs]

I sm on s high dose of HU and have had ET for 13 years. Just developing an ulcer on my ankle. Any help or advice would be appreciated. Thanks.

[francesb]

Leg ulcers are a listed side effect of Hydroxy so I think you need to talk to your haematologist about this. Good luck.

[Mufftreacs in reply to francesb]

Thank you for your help. I have made an appointment to see my GP on Thursday.

Best wiishes,

Kate

[Jimango]

I was put on a high dose of hydroxycarbamide on diagnosis with ET in 2007. In 2010 I developed an ulcer on my ankle but stupidly, because I needed a medical cert to continue work, I didn't make a big deal of it at the time.

By late 2011 both ankles and tops of my feet were covered with ulcers and I had to tell the haemo, who stopped the hydroxy immediately and put me on anagralide. It took 6 months before I could walk properly again. So I reckon you need to tell your haemo sooner rather than later, and expect a different medication regime. Good luck.

[gset]

My advice is see your haematologist immediately.I had ulcers on my ankle and leg some 9 years after starting HU. I ended up with a bad infection that the GP did not take seriously until it was eventually tested for staphylococcus aureus and treated with antibiotics for that. The following year I got two more ulcers. I went to my GP and was treated with dressings. The GP ignored my ET and the drug treatment and tested for diabetes and all sorts of things. The infection got worse and worse and I felt so ill, and in a lot of pain, not being able to sleep After 4 months I had my scheduled appointment with my haematologist who took me off the HU immediately. The ulcers went away, but the result of the lack of diagnosis of the GP meant that I have now become completely allergic to all forms of sticky plasters, tapes etc. Recently when I had surgery this caused a lot of problems. I am now on anagrelide, am ulcer free and fine. Learn form my experience. Don’t let it continue , see your specialist, as HU can cause ulcers.

[lizzziep]

I developed very painful foot ulcers after 3 years on hu. They just would not heal despite many and various treatments. After suffering for several months I eventually saw a dermatologist who told me they would not heal until I came off hydroxy. She contacted the haematologist - who already knew about the ulcers - and asked him to change my medication. I was put on Anagrelide and they started to heal, I still have scars from them. The dermatologist said she regularly saw patients who had foot/leg ulcers who were on hydroxy, and that it is a well known side effect, however they are reluctant to change to other drugs as hydroxy is the cheapest!

[denkbaar]

Go to your doctor inmediately and stop hydrea

It s horrible

It took me years to walk properly again and its goeing to hurt awfully

And Im now on Jakafi

Jan (holland)

[Mufftreacs]

Thank you all for your advice. I am taking it seriously and seeing my GP on Thursday.

Best wishes,

Kate