Foot ulcers

[Benjamin12]

In reply to my previous post on a possible foot ulcer from taking hydroxy. This turned into an absolute nightmare for me after being given 4 different types of antibiotics from the GP I was eventually hospitalised for 5 days. I mentioned it a few times in the process of seeing the GP and in hospital about side effects of hydroxy but was ignored each time. It was only when I came out of hospital and contacting my haematologist that something was done. I cannot begin to explain how debilitating and painful this ulcer was I'm now on Anagrelide . This is something I feel should of been picked up sooner as it was 8 weeks before anything was done. Perhaps a word of warning to anyone on Hydroxy.

[charl17]

I had a similar experience. It is toxicity to HU which a significant percentage of people on HU experience and the connection between HU and leg ulcers is just not recognized by non-specialists. Two internists, a wound specialist, a dermatologist and hospital staff failed to make the connection. They knew I was on HU. I am doing well now on Pegasys.

[clubdino]

Thanks for the warning. It sounds like a very serious complication. Sad that you weren't taken seriously. Warning other potential patients is the best thing you can do right now.

Is yout foot completely healed now? After 4 different antibiotics I would have been worried about C.diff.

[Wyebird]

I do hope you are on the mend

[jointpain]

Sounds very typical of GPs these days, so good that you are on the mend, and that the Anagrelide works.

[Lifam]

Hope you're feeling better now

[hunter5582]

I am sorry to hear both about your experience with the side effects of HU and the ignorance of treating professionals regarding HU and MPNs in general. Like you, I am also HU intolerant. For me, side effects included compromise to intestinal endothelium, mouth ulcers and thrush - and leukoplakia. The adverse effects are gradually diminishing post- d/c the HU , but it is taking time for my body to recover.

With a rate of occurrence of 1/300,000 - knowledge about MPNs is lacking amongst treatment providers. Even hematologists often have little experience with MPNs. if you have not already found a true MPN-expert doc, please be sure to find one. I found a wonderful doc with real MPN expertise on this list of patient recommended docs mpnforum.com/list-hem/ . This MPN-expert doc now serves as a consultant to both me and my on-going local hematologist. It is absolutely worth the time and trouble to travel if you need to.

All the best.

[lizzziep]

I'd been on hydroxy for 3 years when I developed horrendous foot ulcers, my haematologist saw them and said it wasn't anything to do with hydroxy. I saw a podiatrist and my GP and had various treatments including different antibiotics. It wasn't until I eventually saw a dermatologist (after months of agony) that she said it was the hydroxy and it was a well known side effect and she saw them regularly, she wrote to the haematologist and I was put on Anagrelide and they started to clear up, my feet still aren't pretty as the ulcers left scars. No apologies from the haematologist. The dermatologist said hydroxy was cheaper than Anagrelide so that was why people were put on hydroxy first.

[Mufftreacs]

Hi Benjamin,

I too had a similar experience. Fortunately, my GP listened to what my theory was and we found another haematologist for a second opinion. She immediately took me off HU and I started on Anagrelide. My ulcer is just beginning to heal and this is many weeks ago,

It is impossible to tell anyone how painful these ulcers are.

I do hope you are feeling better now after this inexcusable lack of diagnosis.

Best wishes,

Katie