Announcement

Collapse
No announcement yet.

Acthar for steroid resistant patients...

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Acthar for steroid resistant patients...

    About a month ago, after failing to respond to IV steroid treatment, my neurologist prescribed Acthar. My understanding is that is a cortisol replacement therapy for those who are not producing enough cotisol, if any, on their own. It is a gel injected subcutaneously. I am down to my last two doses. I am a little bit concerned. I read some more information on it, thinking I won't need it again for a while. However, according to the internet info, most patients who are on it, end up needing to be back on it sooner rather than later...the body, if it was producing any cortisol on its on to begin with, is like it forgets how and is solely reliant on the Acthar. It says to watch for signs of lethargy, extreme weakness, depression, etc....once off the medicine. Has anyone else been on this medication that can give me some more insight on this issue?

    #2
    I'm also very curious as to the effectiveness and experience anyone has had with ACTHAR. My Neuro was very hot to put me on it, but I switched Neuros in the meantime, and after 2 rounds of IV steroids and a few months of oral Pred, I wonder if it's worth it or not.

    Comment


      #3
      I can only respond to both of you with the same observation. Now that you have taken the drug, are you going to do a test to see how it affected your levels? seems to me that would be the next step in the method. Good luck

      Comment


        #4
        I did Acthar

        About 3 months ago I did Acthar and I did not have any response what so ever. It was much easier tolerated. Years ago I had an allergist that gave me injections of this type of steroid and it always was well tolerated, but these shots were MUCH cheaper. The insurance paid for it, but I still regretted paying so much for something that really did nothing.

        Comment


          #5
          success on Acthar!

          Although concerned that I will have to be back on it soon, I must say that I could tell a huge difference while on it. Before being on it, I couldn't go anywhere without my rollator due to extreme weakness and many times was in my power chair. Once a couple of doses complete, I was able to graduate to my cane, and occassinally needed no assistive device at all. I haven't needed my power chair at all. Also, we all know that fatigue is a big issue with us, I began showing signs of much more energy....my husband could even see a difference. My last dose was 4 days ago, and already, I'm beginning to need my rollator at times. So, at my appointment with my neuro in 3 days, I will speak with her about checking my cortisol levels and what she thinks bout going back on it for good. Will give more updates at that time.

          Comment

          Working...
          X