Flying Fyllis

4th time living in with a difference, guided by and not productivity, and with a temporary nature to it.

💉 After a long and rocky road, I’ve started a trial of interleukin 1 beta (IL1b) blocker to dampen and responses causing havoc to my system, bones, skin, gastro, internal organs & immune system.

Although I’ve had undiagnosed periodic symptoms since childhood, it worsens after infections, from malaria to pneumonia. From having gaps in between before, the symptoms since being hospitalised with pneumonia 3 years ago are now constant with flares on top breaking through and other disease modifying anti-inflammatory drugs DMARDS.

Having multiple complex rare disease manifestations is difficult to manage, carefully balancing overactive and under-active immune system. Whilst being immunosuppressant, already having to manage my already prone to infections, it will hopefully outweigh the adverse inflammatory effects.

I had my first injection today. It was really easy to self inject and no adverse effects. I had lots of reactions to vaccines recently so I’m relieved-so far, so good.

I know that biologics, and specifically Il1 medication, is so difficult to get diagnosed & approved on all health systems. It is expensive. Ironically my insurance spends more than the medication cost on managing my symptoms, such as regular physio and other therapies; I spend more on this than the medication cost! After several appeals and international MDTs with 6 top doctors across NHS & private clinics, my insurance finally approved it.

Hoping for improvement soon 🔜 🙏 & will monitor it closely during the 3 month trial period, on top of the other meds 💊🤦‍♀️.

It’s my first time on biologics, so if anyone has any advice on them, cold chain storage or travel let me know. I’ll stay in U.K. until I start to feel a bit better.

(As an aside disclosure, I recently started personal financial investing, and I hold indirect/direct holdings in SOBI who manufactures the drug, for interest on the company performance as a rare disease orphan drug manufacturer, as part of a diverse portfolio of largely passive ETFs. It is unrelated to my personal medical treatment & not intended to give medical or financial investment advice.)