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Real members of myPNHteam 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.
A myPNHteam Member asked a question 💭
August 27
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myPNHteam

Yes, switching treatments is something many people with PNH navigate, and side effects when starting something new are pretty common. One myPNHteam member shared that when they first began a new treatment, the side effects hit harder at the start — but over time, their body adjusted and the symptoms became less intense.

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Yes, switching treatments is something many people with PNH navigate, and side effects when starting something new are pretty common. One myPNHteam member shared that when they first began a new treatment, the side effects hit harder at the start — but over time, their body adjusted and the symptoms became less intense.

Their advice for starting a new treatment included:

- Rest up — plan to take it easy and don't overcommit to plans while your body adjusts
- Find small joys — little treats or comforts can help lighten the experience
- Keep your mind occupied — doing things you enjoy can help reframe the transition It's also worth knowing that abdominal pain is one of the more commonly reported side effects across several PNH treatments, including:

- Ultomiris (ravulizumab) — about 10% of people report it
- Soliris (eculizumab) — between 1–10% experience GI symptoms
- Empaveli (pegcetacoplan) — around 20% report abdominal pain
- Fabhalta (iptacopan) — between 8–15% report it

Always loop in your doctor if side effects feel unmanageable — there may be options to adjust your treatment plan.

August 27
A myPNHteam Member

Sonia Owchariw, in my case, I switched from Eculizumab (Soliris) to Crovalimab (Piasky), participating in the Phase 3 clinical trial before it was marketed, and it continued to cause hemolysis, along with other side effects. Then, I switched to Pegcetacoplan (Aspaveli), and I didn't notice any improvement there either. The hemolysis worsened. Now I'm on Iptacopan (Fabhalta) and I feel a great improvement because it was the medication that best suited my body.

With almost every change, I've experienced some side effects (headaches, weakness, muscle aches, etc.) until my body adjusts. However, when changing medications, the doses are adjusted during the transition period, so you feel better because there's more medication working within you. All of this must be done under close medical supervision, following their guidelines and recommendations.

August 30

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