I'm now off Hydroxycarbamide (less than a week) and on Anagrelide. My toes are still a mess. The "oldest" is starting to dry, but Now my big toe is swollen, red and weeping, the skin is starting to split open around the nail bed as well.
My question is should I be seeing the dermatologist or the podiatrist, GP seems useless, or should I just wait for HU to leave my system. I have some antibiotic cream the dermatologist gave me. I leave it uncovered while in the house and put a dressing on when I go out, which isn't very often as it is very painful to walk very far on it, despite taking Amitriptyline.
I can only wear some old adjustable sandals, can't bear anything else, even slippers.
Any advice appreciated.
Lizzie x
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lizzziep
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Oh Lizzie you poor thing! This does seem quite worrying. If it were me I would definitely start with seeing the dermatologist again (emergency appointment), or at least ask his/her secretary for a phone call back. They need to be made aware that there is now another toe involved. This has simply been going on for too long. I wonder how long it takes for the hydroxy to leave the system?
Also, have you considered changing your GP. I think it is so important to have a good relationship with your GP especially when you have a long term condition. I have been so lucky with my GP, he is excellent but unfortunately retires in March 2017.
Thank you Mary. I've emailed the podiatrist, it was her who pushed for an appointment with the dermatologist, and will try and contact the dermatologist tomorrow. I've been away from home for a few days so not had my contact numbers with me.
The GP who was "the good one" left the practice a few months ago. I like this practice because it has an open surgery (no appointment needed) every day, the other surgery I could go to is notorious for very long appointment waits.
I think I would want to consult podiatrist and a wound care specialist to oversee the overall healing process in light of your MPN
please speak to your haematologist. I had this and it helped my haematologist to diagnose my PV. I think she called it erythromelalgia and it was due to the thickness of my blood stopping the circulation from working properly in my toes. I had it BEFORE I was prescribed Hydroxycarbamide and was one of my first symptoms that something was amiss. My haematologist prescribed Allopurinol which is also a gout remedy. This cleared the problem. If it is the same as my problem it is systemic and no amount of topical treatment will help.
Thank you. None of the people I've seen have named what it is. The podiatrist and dermatologist say it is caused by the Hydroxycarbamide which I've been on for 3 years. When I saw the haematologist last week she said I needed to change medication which I have done. I've only been on Angrelide for a week so maybe it will take a while for the Hydroxycarbamide to come out of my system. I'm seeing the haematologist again next week so I will see what she says then. I'm hoping to see either the dermatologist or podiatrist before then.
I've got ET, diagnosed 5 or so years ago. I've been on hydroxy for 3 years. I've seen the podiatrist today and he said to contact the dermatologist which I did and she said to give it a couple of weeks and contact them again if it was worse. However I see the haematologist again next week so I'll see what she says.
yes that's good. The thing is if the problem is systemic it doesn't matter how much podiatry and dermatology treatment you have it is difficult to see how that could help. I know we are all different but I have been on hydroxy for 5 years and my toe problems have disappeared. It is as well to mention every possibility to your consultant though. I know we have to not sound to them that we know better than them but sometimes possibilities can be missed. I feel so sorry for you as I know the excruciating pain caused even by a sheet touching my toes and I am so glad the solution was found in my case. Good luck with your endeavours.x
Thank you. I have to get it sorted, currently I can only wear a pair of old adjustable sandals, lets hope winter doesn't come early!
It is our Ruby wedding in December, I don't want to go to the party in those sandals! Let alone our youngest sons wedding next year!
The Amitryptilene (Spelling?) has lessened the pain a lot, especially the burning feeling , but I still can't bear shoes (even slippers) on my toes, and it's not as though I wear pointed/heels, usually flat round toed ones.
please take courage to ask your haemo about erythromelalgia. I am sorry for sounding insistent but your experience is so exactly the same as mine. There is nothing to be gained by not mentioning it and maybe a lot to be gained by asking. Although on the MAcMillan paper it is mentioned as a very rare complication of an MPN it does happen and I do know of another sufferer who wrote a blog on MPN Voice around four years ago who had the same. Courage and lots of luck and good wishes to you.x
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Some more advice please!
Interferon advice please
PV and Blue Toe Syndrome 
