I am reaching out to you wonderful people once more. I have had ET Jak 2 for 3 years. Last May, I received a scratch on my leg I didnt think anything of it, just applied polysporin and in summer I got a nick near my ankle, They were not even noticable. I started going to the dermatologist near the end of June.
-they became infected and I have excrutiatingly painful venous ulcers (both legs and heel) that dont heal and are spreading. They also interfere with sleeping, walking and wearing shoes. I have gone to two dermatologists and doctors, the hospital, a wound clinic and now have been referred to a renowned wound clinic. It took two months for my hemotologist to respond to my request to have an appointment, and she will now see me, after receiving notes from the dermatologists and doctor questioning the the hydroxyurea. (They asked me if I could go off HU.)
Everything I read or have searched states that the only way to heal leg ulcers when you take HU is to stop taking the HU. The doctor at the wound clinic seems to know about HU and said they can heal but it will take a long time. I think it is wishful thinking. I think I need to stop taking HU, I am also terrified about changing to another medicine. I dont know what happens. Does anyone know about this. Thank you for reading this. I hope this isnt too long.
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kitttycat
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Fortunately I never had this issue with HU. However an elderly friend did. As long as he continued on HU his leg ulcers failed to heal. At the time there were fewer available alternatives than now but he did eventually stop HU and his legs improved albeit slowly sadly not helped by the length of time he was taking it and the time it took to finally get agreement to stop it.
You need to press your Haematologist to replace your HU with a suitable alternative and allow your healing to start in earnest because it's doable over time.
Maybe others can suggest which tried and tested alternatives might be available. You needn't fear a change which is likely going to help you and I'm hoping others can give you reassurance.
Hello Chris, thank you for getting back to me,for your encouragement and for your friend's story. I appreciate this information. I do think its best to give up the HU - that healing wont happen otherwise. I am going to address specifics with the hematologist and have printed some written reports as back up.. I hope I do hear from others. Its what I need, its been a horrible experience, that I wouldnt want anyone else to have. Thank you again for your help.
No problem, , it's not often I can add my two pennerth because fortunately I'm behind the times with most of the first line treatments now but do have experience of taking HU many years ago. . I'm glad you have some other contributions. . . . . .
I had horrendous ulcers on my feet when on hydroxy, haematologist denied it was the hydroxy, when I eventually saw a dermatologist she said straight away it was the hydroxy, so I was changed to Anagrelide, I had a few palpitations at first on that but they settled down. There are other drugs besides Anagrelide which your haematologist can consider. Hope all goes well for you.
Hello lizzziep, thanks for getting back to me. I had similar issue with haemotologist saying she hadnt heard of HU contributing to this. I know the only thing to do is stop the HU. I have read that many take Anagrelide that dont take HU.
I have Afib which happened last year and I am sure this stress contributed to it. I was given low amiodarone which stopped it, will need to be taken into account.
Can you tell me how long it took for your ulcers to clear up. Its total agony as you know.
It took a few weeks after I stopped the hydroxy for them to heal completely. The ulcers were very deep and a complete mess. I couldn’t wear shoes, I had thick dressings on my feet to protect them. I wore over large adjustable sandals. Haven’t had trouble since.
Thanks for getting back to me. I can hardly walk and I have also hurt my back from trying to adjust my feet in bed and have to get physiotherapy- We have snow now but I am going to try to wear sandals, with big socks. I did once before this. Your story is encouraging. Glad to know everything worked out. thanks again.
Sorry to hear that you are having this adverse effect from the hydroxyurea. The standard protocol for HU-induced ulcerations is to discontinue HU. unacceptable
Dermatologic Toxicity: Discontinue hydroxyurea if cutaneous vasculitic toxicity (e.g., vasculitic ulcerations, gangrene) occurs in patients with myeloproliferative disorders; initiate alternative cytoreductive agents as clinically indicated. drugs.com/monograph/hydroxy...
It is important to note the risk of gangrene that can result if the ulcerations are not allowed to heal. Treating the ulcerations including discontinuing the HU should be treated as an emergent issue. Fortunately there are other treatment options for ET. The other first-line treatment option for ET is Pegasys. Anagrelide is available as a second-line treatment option.
It is unacceptable for there to be a treatment delay of 2 months for this issue. This is an issue that requires immediate action. Suggest that you consider taking formal action such as filing a formal complaint for inadequate care. I would also replace any provider that disregarded the need for action for an emergent symptom. Here is a list of recommended MPN expert doctors. mpnforum.com/list-hem./
Hunter thank you for getting back to me. My intention is to get rid of HU. I cannot stand the condition I am in anymore. It is very scary to change medicines though. I took a look at the information on HU, very very toxic drug. I was told by one of the doctors about poison getting in my blood stream. The whole process including my numerous calls was too much but I do now have good wound care. Although it isnt that easy I agree about replacing medical providers as we all need to be able to talk to our doctors and have appointments when necessary. This may happen. Thanks again for your help.
It is unfortunate that you are unable to tolerate HU, but this does happen. I was also unable to tolerate HU, though my adverse effects were not as severe as yours. The good news is that there are other options. Pegasys is recognized as another first-line treatment option for ET. There are additional second-line options as well (e.g., anagrelide).
I would not hesitate to replace a hematologist given what you described regarding your care. We all have the right to receive high quality care. We also have a responsibility to ensure that high quality care is delivered. inadequate care can only continue when it is tolerated.
Wishing you healing and the care you deserve moving forward.
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Hydroxyurea break
Anyone else with Jak2 PV have difficulty walking and leg pain?
They had to have one more go at me.
ET 22 years, stopped HU 
Xarelto (blood thinner) and hydroxycarbamide
