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-   Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)
-   -   In a flare, I think (https://www.neurotalk.org/multiple-sclerosis/147891-flare.html)

AynaDee 04-06-2011 11:28 AM
what sold me on the Acthar....

Since it's not synthetic steroids, you don't experience AS SEVERE of side effects. I still had to watch what I ate, I think I only got high blood sugar 2-3 times, where as to prednisone/solu-medral I deal with high sugar the whole time.

AND my moods never got crazy manic like they do with synthetic steroids. I would hulk out and go into hysterical laughter followed by bawling my eyes out all in the same breath. So that was nice to not have to deal with that, lol.

AynaDee 04-06-2011 11:32 AM
Quote:
Originally Posted by SallyC (Post 759682)
Why so expensive? This is an old med (ACTH), that was used before IVSM came along. I guess big pharma got us again with an old med in a new form..:mad:
That's what I was wondering when the nurse told me that Sally! How is something that is supposedly safer than the synthetic, it's older, and more experienced with than synthetic steroids, 3x more!?

I would certainly hope that it wasn't that expensive back before the synthetic steroids.:(

FaithS 04-06-2011 11:35 AM
Wow. $25,000. I think, since I'm on a much lower prednisone dose (80mg per day) than what is the norm for me (1000mg per day), I'll stick with the steroids.

Just heard about the Acthar, though, on another board that I post on. Hadn't ever heard about it before. I might keep that idea in my back pocket, to ask my MS specialist about, next time I see her. Maybe for a future flare.

But, idk. Prednisone is cheap. Might just be easiest to go with that, even though I hate it. Sounds like Acthar doesn't do away with all the med side effects anyways.

~ Faith

SallyC 04-06-2011 11:37 AM
Quote:
Originally Posted by AynaDee (Post 759685)
That's what I was wondering when the nurse told me that Sally! How is something that is supposedly safer than the synthetic, it's older, and more experienced with than synthetic steroids, 3x more!?

I would certainly hope that it wasn't that expensive back before the synthetic steroids.:(
I found this, from an article.....

On August 27, 2007, Questcor announced a new strategy and business model for H.P. Acthar Gel Repository Injection. The cost of the product was increased from an average wholesale price (AWP) of $2,062.79 per vial to an estimated $23,000 per vial.

The company explained that its price increase was crucial in order to continue manufacturing and distributing this agent to patients who needed it and to fund projects that could contribute to the company’s growth.

Sheesh!!:rolleyes::mad:

AynaDee 04-06-2011 12:51 PM
Quote:
Originally Posted by SallyC (Post 759690)
I found this, from an article.....

On August 27, 2007, Questcor announced a new strategy and business model for H.P. Acthar Gel Repository Injection. The cost of the product was increased from an average wholesale price (AWP) of $2,062.79 per vial to an estimated $23,000 per vial.

The company explained that its price increase was crucial in order to continue manufacturing and distributing this agent to patients who needed it and to fund projects that could contribute to the company’s growth.

Sheesh!!:rolleyes::mad:
A $21,000 price increase!!?? That's really necessary??? I mean a $5k jump is a huge increase, but a $21k increase, that's greedy, and insane.:mad:

FaithS 04-06-2011 02:12 PM
Quote:
Originally Posted by FaithS (Post 759108)
I've been having some dizziness issues this past week. In my general MS history, these have normally been an indication of the beginning of a flare. ...

I emailed Dr. L's nurse, regarding how to best treat this. (She generally responds quickly to emails; it is difficult to get her to respond to phone calls. Her office is located in KS City, 3 hours away.) ...

Current symptoms are minor and manageable. Many people with MS would likely have the luxury of choosing not to treat the flare at all, and, just allow it to run its course. My MS history does not seem to allow me that choice.

Dr. L decided to rx 80mg per day, for 10 days, followed by a 9-day taper. Many doctors and pharmacists consider 100mg per day to be a high dose. So, even though this is considerably lower than the 1000mg I usually take, it is possibly high enough to stop the symptoms from increasing.

DH and I will continue to monitor for continued or increased symptoms.

~ Faith
No improvement in dizziness yet. Actually, somewhat more frequent, I think. No changes in treatment, though, at this point.

Nurse says, "Hang in there. It will get better."

~ Faith

Kitty 04-06-2011 02:27 PM
Quote:
Originally Posted by SallyC (Post 759690)
I found this, from an article.....

On August 27, 2007, Questcor announced a new strategy and business model for H.P. Acthar Gel Repository Injection. The cost of the product was increased from an average wholesale price (AWP) of $2,062.79 per vial to an estimated $23,000 per vial.

The company explained that its price increase was crucial in order to continue manufacturing and distributing this agent to patients who needed it and to fund projects that could contribute to the company’s growth.

Sheesh!!:rolleyes::mad:
More like fund the big bonuses for the upper management staff. :mad: :rolleyes:

AynaDee 04-06-2011 02:35 PM
Quote:
Originally Posted by Kitty (Post 759756)
More like fund the big bonuses for the upper management staff. :mad: :rolleyes:
Yeah it must be really nice to be have no health problems and so much money rolling in that you jut blow it on multiple vacations around the world all year long, and then decide you need more money so jack the prices up for those that NEED the medicine and have NO FUNDS because of the CRAP disease they were OBLIGATED to. :mad:

It makes me so angry. I wish I would have got a receipt when I got MS, cuz I sure would take it back for a full refund. BUT since I did NOT get a receipt, does this mean I get a free meal or maybe a $5 gift card? Cuz that's how it works most places, right? :cool:

SallyC 04-06-2011 07:47 PM
Quote:
Originally Posted by FaithS (Post 759754)
No improvement in dizziness yet. Actually, somewhat more frequent, I think. No changes in treatment, though, at this point.

Nurse says, "Hang in there. It will get better."

~ Faith
So sorry, Faith.:( I hope you start responding and feeling better soon..:hug:

Dejibo 04-07-2011 07:53 AM
Just hugs and prayers :hug: I wish I had something better to say, but I dont, so ...I will just by you and wait for you to feel better. :hug:


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