Angelamic. Great pictures. The first step is always 'how do you feel' I can tell you are feeling really good. All the best. Autumm

Hi Angela, Great Pictures! It is encouraging to see your meds working well.

I am not sure what an ACTH injection is...Could this be a hormone for the kidney adrenal glands?

Nice results. Thank you for sharing. Keep us posted about the EMG.

Thanks! i DO feel great!

yes trpt1 :) http://www.acthar.com/

it was a fight to get it with insurance but i think it was well worth it
ill keep you all updated :)

Trpt. This was used a lot in the 1950's. Replaced by more up to date treatment. Used to be fairly inexpensive now VERY expensive. Does not work for all but when it does its great and no prednisone. Was never suggested as a treatment for me. Hope you are doing well. Autumm

Hi! I get my shipment of Acthar Wednesday and I was looking for some input on how well it works and to see what some of the side effects were for some of you all. I am glad to see that it is working well for you!!

justk - my experiences:
i actually had more side effects with the acthar. they were all bearable. i gained a little weight, i have a belly now and i had acne kinda bad. its still clearing up. my doc told me to use neosporin on the pimples and surprisingly it worked amazingly.

i took 1/2 unit 2 times a week. and it really wasn't till about week 5 when i started to notice a difference. everything started to clear up.

i LOVED that after the injections i felt no pain . lol also loved the natural energy lvl it provided. (i still have it even though im done) . i had LESS mood swings then with predisone.

for me this treatment has worked wonderfully.
tomorrow i will be drug free for 2 weeks. i have no noticd that my rash came back a little...but its not evem 1/4 as bad and it gets worse at night. in the morning it is barly there at all.
also : now this is scary, after my showers my legs are turning very bright red and purple. they are blotchy and it all clears up to normal in about 15 mins. Tomorrow i go for my EMG so i will inquire about that.

other then that i found acthar to be a very great experience and i hope it will be for you also!
keep up updated :) we need as much info on this out here cause there is like none!!!

Hi Angelamic. There is a lot of information on Acthar on the TMA site. You will find it interesting. Autumm

TMA site?

TMA stands for The Myositis Association. Here is its website. Although it can be difficult to find your way around this site, it is very informative.
http://www.myositis.org/

They also have a Facebook page. Here is that link.
https://www.facebook.com/Myositis

Thanks ! I found the site and was looking around a bit . Seems informational for sure :)

So... Test was great!! No inflammation !!! I have blood work in a month to test my cpk lvl's :-) I'm sooooo happy

Great news. Well done. Autumm

thank you!
i honestly couldn't believe it lol
i def cried :D

Braveho! Strength and confidence is important!