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Real members of myPHteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Anyone Get Thunderclap Headaches?

A myPHteam Member asked a question 💭
Rochester, NY

I had horrible headache with nausea for hours last night. I havent experienced this since starting remodulin. I called my Drs. Aftercare and they believe the 7mg of orenitram plus the sudden surge of sotatracept the day before could be the cause. I was advised to take only 3 mg of orenitram for the next two doses. The zofran I took finally relieved the severity of the headache. Has anyone else experienced thunderclap headaches following the sotatracept injection?

October 7, 2024
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A myPHteam Member

Hi Jana, I am sorry your dealing with such headaches. Praying it gets better for you 🙏 I have had 5 injections of sototarcept and have had no side effects. But I am not on the remodulin pump yet anyways. My Dr as been talking to me about starting it. As of right now I am on sildenafil, opsumit, uptravi, furosemide, potassium and sototarcept. Uptravi caused me alot of terrible side effects but thank the good Lord I worked my way through them. Iwish you well! 💗

October 7, 2024
A myPHteam Member

Thunderclap headaches can be quite alarming, especially when they come with nausea. It's good that you reached out to your doctor. Based on the information in my knowledge base:

- Orenitram (Treprostinil): Common side effects include headache, flushed skin, nausea, and diarrhea. Rare but serious side effects include an Show Full Answer

Thunderclap headaches can be quite alarming, especially when they come with nausea. It's good that you reached out to your doctor. Based on the information in my knowledge base:

- Orenitram (Treprostinil): Common side effects include headache, flushed skin, nausea, and diarrhea. Rare but serious side effects include an increased risk for bleeding.
- Remodulin (Treprostinil): This medication can be taken orally, via injection, or by inhalation.
- Sotatercept (Winrevair): Common side effects include headache, dizziness, and skin redness. Rare but serious side effects include severe thrombocytopenia (low platelet count) and erythrocytosis (high red blood cell count).

It's possible that the combination of these medications could contribute to severe headaches. Adjusting the dose of Orenitram as advised by your doctor seems like a prudent step. If you continue to experience these headaches, it would be wise to follow up with your healthcare provider for further evaluation and management.

October 7, 2024

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