Yesterday (January 16, 2026), England's National Health Service issued four documents announcing that from now on human normal immunoglobulin "is recommended to be available [for adults] as a routine commissioning preventative treatment option for idiopathic systemic capillary leak syndrome" on an off-label basis.
This is very good news for current adult SCLS patients in the United Kingdom who have struggled to get their IVIG infusions approved, and for future SCLS patients who will now have easy access to this very successful therapy. NHS England estimates that the incidence of SCLS in the whole of the UK is 5 new cases per year and that the prevalence of SCLS is approximately 15 live patients, or less than one per million inhabitants. (The UK has a population of about 70 million.)
The documents, with inclusion and exclusion criteria, recommended dosage, and other details, are available through the links that follow, and they may be useful for patients and physicians in other countries who have trouble getting approvals for IVIG infusions:
https://www.england.nhs.uk/wp-content/uploads/2026/01/2270-clinical-commissioning-policy-Human-normal-immunoglobulin-for-preventative-treatment-of-idiopathic-systemic-capillary-leak-syndrome-following-an-acute-episode-adults.pdf
https://www.england.nhs.uk/wp-content/uploads/2026/01/2270-clinical-panel-report-may-2023.pdf
https://www.england.nhs.uk/wp-content/uploads/2026/01/2270-clinical-priorities-advisory-group-summary-report.pdf
https://www.england.nhs.uk/wp-content/uploads/2026/01/2270-evidence-review.pdf
This is very welcome.
Personally I have not found any problems getting IVIG for SLCS in the UK.
krogers, I'm glad to hear that you haven't encountered problems in getting your IVIG since 2012, but others have, and besides, oftentimes the issue has been access to the recommended high initial dose of IVIG -- an important aspect contemplated by the new policy, which states as follows:
"The optimal dose of Ig therapy in idiopathic SCLS remains to be determined and therefore this policy gives a dose range of 1-2g/kg IV based on ideal body weight, or equivalent subcutaneous dose. The most frequently given starting dose according to the evidence is 2g/kg but clinical judgement shall determine the appropriate starting dose and, if appropriate, the tapering dose (see tapering criteria below). Treatment should be given every 4-6 weeks."
As per your profile, you've been getting by with 0.5g/kg every 3 weeks (= 0.67g/kg every 4 weeks), which is a wonderful achievement, but if ever you should need a higher dose because you have one or more episodes, now you are entitled to it.
When my doctor first discussed IVIG witth me this was quite a new treatment for SCLS. He could find no real reaon why 2g/kg was being proposed other than this was used for some other autoimmune conditions. So he proposed starting with a lower dose and to increase it until I no longer experience symtoms (i.e. leaks). There is the advantage of reduced treatment time and associated side effect with this approach (an afternoon rather than a whole day) and it also impacted by work situation less too. As I had found that I could always tell when a leak was starting and the A&E depatment knew how to treat me if any leaks occurred (and was quite close to my home). As it turned out this lower dose has kept me leak free for over since then (13 years so far). I do find it comforting knowing that if leaks return then there is always the option of increasing the dose. I seem to remember there are 1 or 2 other examples in the literature of others using a lower IVIG dose successfully.
Given the success of this approach and as there is signufucant variation in the SLCS condition, I wonder if this approach should be tried more routinely rather than assuming an optimal dose is the same for all patients.