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Has anyone ever tried ECULIZUMAB for ME/CFS? Are there patients with concomitant PNH?

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
You might want to read these. At that price, most patients wouldn't be able to get it approved. IVIG is far cheaper.
Eculizumab (Soliris) is the fourth most expensive drug on the market in the US, costing $400,000 to $700,000 per year, it has only four FDA approved indications, all of them quite rare, and it is associated with some severe adverse events/risks. So I doubt it has been tried on anybody with ME/CFS and small fiber neuropathy.
https://forums.phoenixrising.me/thr...fiber-neuropathy-question.62252/#post-2227451
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Gotcha, but I don't know anybody around here who has $500,000 burning a hole in their pocket to try something that has significant bad side effects and is, above all, off label for ME / CFS.

From the Center for Biosimilars:
At a list price of approximately $500,000 per patient per year, eculizumab, which is also approved to treat atypical hemolytic uremic syndrome and generalized myasthenia gravis, is one of the most expensive therapies in the world. It sells for $6543 per vial; the wholesale acquisition cost of ravulizumab is slightly lower at $6404 per vial, the company said in a recent filing, according to Reuters. Reuters also noted that the newer drug has an FDA black box warning for the risk of life-threatening meningococcal infections and sepsis, the same as eculizumab.

Good luck on your quest.
 
Messages
58
He’s an idiot after I talked to him. He had/has myasthenia gravis and that’s the treatment you can get for it. Like others said it’s expensive and hard to get from insurance.

I wish I could have deleted the last post because he did not say he had myasthenia gravis. Which is the problem with all these covid long haulers because they don’t tell you what they had before covid.

Long story short he’s great now.
 

wastwater

Senior Member
Messages
1,271
Location
uk
It’s incredibly expensive though and it would be hard to obtain I imagine if you had one of the approved conditions but I still wonder what it may do for M.E