Hello everyone!

Since 2019, I have experienced SCLS (few acute attack when triggers were present, such as influenza, infection etc). In 2025, the formal diagnosis was confirmed. SCLS manifests in a more chronic way in my case, and I lack the M-protein. Also, often the IgG is not below reference in my case. I have been put on the TKI Imatinib in June '25, starting at a dose of 100mg. This was increased to 200mg in September '25 and 300mg in June '26. I do experience some improvements but also still the leaking, manifesting as malaise, persistent edema etc. next to quite debilitating side effects from the Imatinib (neuropathy, anemia, neutropenia, leukopenia, nausea, vertigo, etc.). My question is, are any of you familiar with the treatment of TKI for Clarkson? If so, what did you experience?  

I personally feel it seems to do something sometimes, but not much and I still feel like my quality of life has not really increased....  I am unsure whether this treatment suffices in my specific case. I would love to hear from your experiences and if you maybe have some recommendations for me as to what other treatments can be explored. My specialist seems pretty conservative when it comes to IVIG....

Thank you in advance!!