Sorry to hear about the issues with HU. Unfortunately, this is common with this drug. Topical agents like Magic Mouthwash can reduce pain but do nothing to prevent the ulcers from occurring. Unfortunately, not sharing information and medical gaslighting are all too common in medical care. Doctors have an ethical obligation to educate the patient about potential adverse effects but all too often fail in their responsibility. Note that GI issues and fatigue (asthenia/dyspnea) are also common HU adverse effects.

I was refractory to and intolerant of HU. I have done much better on the interferons, Pegasys then Besremi. The IFNs have been more effective and much easier to tolerate. Note that the IFNs are recognized in NCCN MPN Guidelines as another first-line treatment option for ET/PV. It should be up to the patient to decide which option is most suitable.

Since you are on HU and apparently you were not provided with the information you need, here are some helpful resources.

https://www.drugs.com/monograph/hydroxyurea.html
https://www.oralchemoedsheets.com/sheets/Hydrox...
https://ethrombo.blogspot.com/2017/10/taking-ch...

Hydroxyurea – NCODA

https://www.oralchemoedsheets.com/sheets/Hydroxyurea_Patient_Education.pdf

Taking chemo? Use a condom

https://ethrombo.blogspot.com/2017/10/taking-chemo-use-condom.html

Thank you
And yes i feel like a pin cushion

Thank you it’s hard because the drs don’t say the things you will experience. They treat it like it’s nothing. At least that is how I feel. I’m having seizures on top of it. They’re the aware of seizures like a partial seizure. They only last 30 seconds to two minutes. It’s just really hard than with all the appointments. I hate to miss work but like you said it’s not in my control. They told me to get a support group so that’s how I got on the site.

I continued to work full time for almost 7 years after diagnosed with ET in 2001. I just slogged thru a very demanding job, honestly unable to differentiate after the first few months what were side effects and what was just physical and emotional stress. I, personally, feel it is important to accept what we can’t change, follow our physician recommendations and do the best we can to live our lives. In between labs, physician appointments, phlebotomies, etc., of course. 🙄

Hello How long have you been on HU. How did they prescribe it to you. Do you have symptoms.
I struggle working full time and keeping up the pace I use to.
I now take it everyday with aspirin. 500 mg and 325 mg aspirin. I use to take HU twice a day. That was worse to get through my day.
Stomach ach fatigue
How are you doing. I’m 55 and frustrated 😂