HP Achthar Gel Drug for SS and Polymyositis

[vrystaat]

After failing just about every treatment for Sjögren's Syndrome with severe Polymyositis and Peripheral Neuropathy, my Rheumatologist has offered to treat me with the above drug.
H.P. Acthar® Gel (repository corticotropin injection) is an adrenocorticotropic hormone (ACTH) analogue used for: a variety of Autoimmune Diseases, including Polymyopathy.

What this drug does s to stimulate your own adrenal glands to produce cortisol (the human body version of Prednisone, and other steroids). The drug is very new, but has had some excellent results.
The main problem is its cost: $40,000 per year. This ridiculous price forces patients to seek help with the copay, using such methods as provided by the Assistance Fund.

All this has been too much for me, and I have declined to use this drug.
Has anyone else tried or been informed of this new drug?
 

[Sharon]

I've never heard of it but this sounds very interesting!
I wonder though- what is the difference between using Prednisone (and other steroidal meds)
and using this new drug as far as side effects if it also ends up increasing cortisol?

[markt]

I read about this one, as it has been tested for application in AI disease and refractory KCS (Inflammatory Dry Eye)... and seems to be a promising approach.  RA and SLE patients seem to be more familiar with this treatment.

An unfortunate side effect is that this acts on cortisol production of your pituitary gland stimulating it to produce over and above it's normal/regulated production... when coming off of it after sustained use, it can cause Cushing's Syndrome or something similar where your pituitary produces insufficient cortisol after the fact.   

Also, it can cause weight gain and "rounded moon face" apparently similar to other steroid therapeutics.

Not sure what else it can cause, or more importantly, how likely the side effects are.