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

[bread.]

Anyone?

 

[bread.]

Anyone?

Anyone?

 

[andyguitar]

If you put Eculizumab into the search box on this site a couple of things come up @Bread

 

[bread.]

If you put Eculizumab into the search box on this site a couple of things come up @Bread

no answer to my question though?

 

[Learner1]

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

 

[bread.]

I am not asking who did not take it and why.

 

[Learner1]

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.

 

[bread.]

You still dont get it.

 

[Learner1]

Sorry, I don't. Glad you do.

 

[bread.]

uff.

 

[Learner1]

 

[bread.]

anyone?

 

[Learner1]

What's PNH?

 

[dahsar]

Anyone?

Someone in my Covid Support Group has taken it after IVIG since it has not been successful but Eculizumab has been a godsend. Been 7 weeks, will keep you posted for any updates!

 

[bread.]

Could you let us know more about this? What were his main problems? thank you!

 

[dahsar]

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]

I’m interested in this as I’m starting to think I may have partial aHUS

 

[wastwater]

Ravulizumab is another I think would be worth trialling for ME

 

[andyguitar]

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.

You dont need to delete it, just edit it.

 

[wastwater]

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