The Acthar gel shots arrived early this morning. I am already feeling better. Still not moving and transferring like I want but this is day one....I get four more shots so maybe I will be able to move for a bit. Acthar is an old drug and used to be rather inexpensive. Sadly the cost has skyrocketed...My insurance paid about $28,000.00 for just five days.
After taking the shots then I will be taken off Rebif, steroids and Acthar for three months to prepare for Tysabri. I am anxious to start....and hoping the Acthar will keep me mobile for a month or so. If not family knows we are going to need help. I just hope it isn't necessary. My husband travels often and if I take a dive I am gonna need help...Wishing it wasn't so.
My question is have any used Acthar and were you on monthly steroids? Did the Acthar last longer then the steroid infusions or did you find yourself still needing more in three or four weeks?
Since so few have used Acthar here is an update. I took the last shot about two weeks ago. It doesn't work anything like the IVSM. It has given me just enough stuff to transfer but not easily. I guess it is better than nothing.
There are side effects but no heartburn or gastro problems. It does swell your feet up like balloons. It is time released so the swelling will go up then down. I am drinking tons of water.
Is it worth it? Guess so if it is the only thing available next to IVSM...at least I am not totally bedridden.
WOW Sumana, that's allot of money, $28,000.00. I'm glad to hear that they are doing something for you now, for some reason I thought you were a fellow PPMS friend. Sure glad you aren't. Is there someone at home that can help you transfer when needed? I will be keeping my fingers crossed that the Tysabri is going to make a huge difference for you!
Nope Red, I thought so, too but the end of June marked my year with new neuro. She dxed me with PRMS...Although rare (about 4% of MSers), it holds hope. The DMD's are still available to me. And, plus, more good news, my doctor called and I will start the Tysabri on July 22 at l:00pm. I am counting down the seconds to that date.
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