Migraine Increase Since Starting HU

[Beachbud]

Hi, I was recently diagnosed with ET J2+ and have been taking HU (500 mg), 3X a week for the past 6 weeks. Since starting HU, I've been experiencing more frequent and worsening migraines. While I have a migraine history after a brain surgery 20 years ago, they're occasional and a CGRP inhibitor, Ubelvy, has effectively addressed them. My latest migraine 2 days ago occurred within 2 hours after I took HU and it was brutal. Ubrelvy struggled for hours to reduce it. And after the recent migraines pass, I also experience parenthesia, including numbness, all around my skull and face, and sometimes some dizziness/unsteadiness -- unusual symptoms for me. I'm wondering if the uptick in migraines and neuro symptoms is a HU red flag for me, or if smaller individual doses (<500 mg) over more days makes sense. BTW -- my platelets dropped from 567 to 496 within 2-3 weeks of use, so those were going in the right direction. From past posts here, it's my impression that more migraines occur from the MPN than HU. When I reported my migraine increase to the hematologist 10 days ago, he only said that I'm in a grey area (me, the 70 year old) about needing treatment (besides aspirin) at all - despite my having other probable ET symptoms before HU. I've made an appt with my neurologist - headache specialist, but I don't know if she's familiar with HU or MPNs.

[hunter5582]

Headaches and dizziness are common HU adverse effects. Paresthesia is less common but also possible. What you are describing is consistent with having an adverse reaction to HU. Suggest that further conversation with you hematologist would be a good idea. You will need to weigh whether the putative benefits of cytoreduction are worth the risk in your case.

To answer you question, adverse effects are dose dependant. There are lower doses of hydroxyurea available under the brand name formulations. Droxia comes in 200-300-400mg. Siklos comes in 100mg. It is reasonable to wonder if a more frequent lower dose would be more tolerable. That is something to discuss with your hematologist.

Like you, I experienced migraines after a brain surgery. Ubrelvy was amazing, eliminating the migraines within 1 hour. CGRP inhibitors are a huge improvement in migraine treatment, Unfortunately, most doctors, including neurologists, know little to nothing about MPNs. It is common to need to explain MPNs and how they manifest when engaging in care from other providers. MPNs are rare diseases and most providers have no experience with them. What matters most is to find providers willing to listen to their patients.

You may also want to discuss the other treatment options for ET with your hematologist. Pegasys is another NCCN preferred treatment option if you do need to use cytoreduction. There are also second-line treatment options like anagrelide. As your hematologist stated, you also have the option to select aspirin + monitor in your situation.

Wishing you all the best.

[Beachbud in reply to hunter5582]

Thank you for your detailed response Hunter. I left a message with my hematologist's practice this morning. Perhaps a lower dose would be more tolerable, while being effective. I'd been on low dose aspirin a month or two prior to my official ET dx, and it wasn't addressing overt symptoms. Unlikely there'll be an "easy" solution -- if even short term. We'll see.

Glad Ubrelvy works well for you, too. It arrived, new on the market, at just the right time for me. Triptans had worked for me for years after my surgery, but like others who get older (e.g. 60's), triptan use became associated with new cardiac symptoms. Stopping triptans stopped those symptoms in my case.

[Amethist]

Hunter has given you a great reply, as always.

I would like to mention that your reported Platelet drop in numbers may just be a coincidence and not attributable to HU. These numbers are changing all the time due to a wide variety of factors. On several occasions when I have had 2 blood tests taken in the hospital within 1 hour, I have had a difference of approx 300. Yes 300! Sometimes higher sometimes lower. No clear answer as to why . I don’t take any prescription meds, just occasional aspirin.

I guess the only way to see if HU is the issue is to have a period of time without it and see if your new symptoms fade away. If that does happen then you have the option of aspirin as your Dr mentioned, or the other options Hunter already stated.

If your Headaches/ parasthesia …etc was related to HU, then I highly recommend you report this on your countries drug watchdog: VAERs. This helps build a picture of possible side effects that helps other patients in the long run.

I would also recommend, if you haven’t already, get all your vitamins levels checked, just to rule out any possible deficiencies, and to rectify any that come up.

Best of luck !