Been diagnosed with ET, Jaj2 pos with Calreticulan. mutation in 2006. Have gone through gamut of side effects. Massive headaches, tinnitus even leading to ear bleeds, some fevers 39.8° , excessive sweating and I mean dripping excessive whenever I exert myself. I am on Hydrea alternating 500/1000 every 2 days. My latest counts are always in the 450-525 range. If I take higher doses of Hydrea I get huge ulcers on my ankle bones that dig right to the bones. I am wits with this disease and suffer from severe arthritis from disc degeneration in my lower back. Am always tired cannot sleep because of the tinnitus, even with neuromodulation music to try coûter it. Doc has put me on sleep meds. Sometimes during the day the tinnitus is so loud it drives me to massive headaches and just take sleeping pills not to deal with it.
Fed up and at wits ends.
Written by
BellTech
To view profiles and participate in discussions please or .
I am sorry to hear you are having such struggles. Some of what you describe is likely the result of the MPN, but significant part of it sounds like hydroxyurea adverse effects. The vascular ulcerations are a very serious side effect that can lead to even more serious issues like gangrene. Most docs would discontinue the HU and transition you to a different medication. I really do not understand why you have been continued on HU despite the obvious HU-toxicity you are experiencing. There are other medication choices, including Pegasys and Anagrelide to name a few. Here is just one article on this topic. ncbi.nlm.nih.gov/pmc/articl...
Here is some additional information on hydroxyurea.
"Discontinue hydroxyurea if cutaneous vasculitic toxicity (e.g., vasculitic ulcerations, gangrene) occurs in patients with myeloproliferative disorders; initiate alternative cytoreductive agents as clinically indicated"
"Long-term treatment with hydroxyurea is associated with painful skin ulcers, aphthous ulcers, non-ulcerative toxicity with erythema, and skin infiltration.[17] Rarely, long-term therapy with hydroxyurea is associated with gangrene of the toes and digits.[18][19] The recommendation is to discontinue the drug."
I urge you to seek a second opinion on your treatment regimen with a recognized MPN Specialist. There can be significantly better control of your ET without such significant adverse effects. Here is s list of MPN expert docs. mpnforum.com/list-hem./
It is worth doing whatever it takes to see a doc with the expertise you need.
Sorry to hear of your problems, having ET and had leg ulcers my GP carried on with treatment, but when I saw haematology they immediately discontinued HU and put me on other treatment. Please seek a second opinion in your medical advice - the pain of leg ulcers and how much they drained me took time to recover from. 5 years later I am much better and have less symptoms too. However the damage of me wearing plasters on the ulcers for months has left me permanently allergic to the glue on plasters with far reaching consequences for surgery as I found recently with a hip replacement. As said by Hunter below this is documented in the contraindications so needs to be highlighted and addressed.
I sympathise with the sweating as any activity, even just standing still can bring me out in sweats, even on the forearms, but again this is better than it used to be. Maybe another treatment will be better for you too.
So sorry to hear. I wonder if alternative therapies will help, such as acupuncture, reflexology ,relaxation. Sometimes tinnitus can be helped by antidepressant therapy.Take care and perhaps you could be referred back to ENT consultant to check nothing else can be done to help. Very unpleasant. I do get tinnitus but mine is worse some days, like a motorway or enough to make me feel my head is shaking.
Keep practicing breathing and mindfulness to reduce stress as much as you can manage.
Concerning tinnitus: have you done any research/received any advice on the idea of training your brain to "ignore" (or at least tone down) the tinnitus? It might be worth a look if everything else has failed ...
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Very bad headache when I wake up!
Hydroxyurea ( Hydrea) and vaccine safety 
Should I take Hydrea for 7 days?
Hydroxyurea vs aspirin question
Immune system compromised?
