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Success with Fumaderm in Scotland
Hi, Ed: Since we last conversed, I’ve had a change in approach to managing my P. I had an itinerant working lifestyle, living away from home in hotels 3 or more nights each week for work that has precluded phototherapy, which is the standard topical treatment here in Scotland.
About 3 months ago I was so bad (approaching 30-40% coverage) and was prescribed Soriatane on the basis that it was the least toxic of the systemics on the market, but this was canned straight away based on initial blood tests that showed I had elevated triglycerides that would be exacerbated to dangerous levels by use of this drug.
So I consulted with the derm at my local hospital who advised that the only two licensed drugs on the market for systemic use in the UK are Cyclosporine and Methotrexate. After reading everyone’s adventure’s about these products on this website I was reluctant to commit to such an aggressive regimen.
The dermatologist recommended trying Fumaderm (an unlicensed drug in the UK) for a trial period. It's a complex, ramped up, protocol to follow with some uncomfortable side effects (it's colloquially known as ‘poo-maderm’ in the UK due to the upset stomachs and diarrhea) but has had an incredible effect on my P. Aside from some blotching of the skin where I was previously scaly, I have now only a few areas that are flaking (interestingly they are areas where I had been using steroid ointments, such as my hands) and I must be under 5% across my body.
Side effects can be mitigated in the early stages with OTC irritable bowel syndrome meds such as peppermint oil.
I’ve just had my bloods done for a second time (yesterday) to check that my blood counts (LFT and white cell count(?)) are within tolerable range and am looking forward to continuing with my current dosage (3 tabs = 360mg/day).
Hope this gives people some food for thought going forward. I know this product in not for everyone but if you can bear with the initial side effects, it appears to be very successful for many (though I'm not sure that the mechanism is well understood).
Finally, I'm also looking forward to going swimming with my 6 year old son for the first time in the UK and not scaring everyone else out of the pool!
Ed’s Response: Good to hear from you Stu. You've found success with one those systemic drugs popularly used in Europe but not “approved” in the U.S. We've got a number of correspondence exchanges here about Fumaric Acid Esters (the active ingredient in Fumaderm, as I understand it).
If you haven't already, you might want to read these:
Hope it continues to work well for you! For a little while word was out that a major pharmaceutical company here in the U.S. was going to apply to test FAE here ... but then nothing followed. FAE may be an alternative for people in the U.S. who are wearing out the usefulness of methotrexate or cyclosporine. -Ed