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Started Agrylin yesterday and have had a headache since. Will it eventually go away?

A myMPNteam Member asked a question 💭
Fort Gratiot, MI

Have ET with platelets now in the 700’s so started Agrylin. I couldn’t tolerate HU. I sure hope I can tolerate Agrylin. I’m getting worried.

September 26
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A myMPNteam Member

Janice I’m taking Anagreide and I’m feel the same way when my platelets are higher. Walking also helps with headaches.

September 29
A myMPNteam Member

Thanks. I did notice a difference after morning coffee today. Seems easy enough. I'm hoping as I get used to it the headaches will go away.

September 26
A myMPNteam Member

Hi Joyce. I switched several years ago from HU to Agrylin as couldn't tolerate digestive issues I got with HU. I do sometimes get headaches from Agrylin, especially when platelets are higher. My ET specialist recommends caffeine for the headaches. Another doctor told me she herself uses Excedrin for headaches because it has caffeine. Personally, I've found that a cup of coffee helps, but I can drink coffee only in the morning as caffeine can give me problems with sleep and digestion. My preferred solution is to lie down for a short nap with a cold damp wash rag on my forehead. Marianne on this site suggested an over-the-counter gel wrap designed for headaches and kept in the freezer. I tried putting a damp wash rag into the freezer for a while before I put it on my forehead, and that felt good. Plus I think taking a walk might help. Good luck! With best wishes, Janice

September 26 (edited)
myMPNteam

Starting a new medication can feel nerve-wracking, especially after already having a tough experience with another treatment. The worry is completely understandable — but there's some reassurance here.

Headaches are actually a known and common side effect of Agrylin, along with fluid retention and diarrhea. So what's being Show Full Answer

Starting a new medication can feel nerve-wracking, especially after already having a tough experience with another treatment. The worry is completely understandable — but there's some reassurance here.

Headaches are actually a known and common side effect of Agrylin, along with fluid retention and diarrhea. So what's being experienced right now may simply be the body adjusting to the medication. It's also worth knowing that headaches are already a common symptom of ET itself, particularly when platelets are elevated. High platelet counts can cause microvascular symptoms like:

- Headaches
- Ringing in the ears
- A feeling of fullness in the head
- Numbness and tingling

So the headache may not even be entirely from the Agrylin. The most important step right now is to let the hematologist know about the headache. They can help figure out whether it's a side effect that may ease over time, or whether any adjustments are needed. Don't tough it out alone — that's exactly what the care team is there for.

September 26

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