Acthar Gel for MS

Standard

My neurologist put me on Acthar Gel to address an MS exacerbation, and I haven’t found much online in the way of first-hand accounts of the experience, so I thought I’d share mine.

It’s a ten-day self-injection regimen, and I’d heard great things about how much it can help with MS-related visual and gait issues.  The morning after the first injection, my face was flushed and I felt heat down the tops of my upper arms.

The next morning, I felt anxious, wobbly, and even had some trouble breathing.  After about a week on Acthar, I noticed that my face looked different.  It seemed kind of… rounder, and I noticed my eyes seemed to be bulging slightly.  

It turns out that a common side effect of taking Acthar is that you may temporarily develop Cushing’s Syndrome, which is characterized by a rounder face and bulging eyes.  It can really be disconcerting to wake up and see yourself looking so different, but it goes away once you stop taking the medicine. 

While I was taking Acthar, my knees were really hurting, as if someone was stabbing each knee joint as I tried to walk.  It turns out that Acthar depletes calcium.  You’ll also gain ten to twelve pounds while you’re on it. And you may find yourself uncharacteristically irritable as well.

Anyone else out there on Acthar?  Care to share your experience with us?

4 thoughts on “Acthar Gel for MS

  1. sf

    Oh…I’m so sorry to you about your illness. I hardly know about MS, besides what my nurse sis tells me about her patients. I prayed for you tonight, for your health, and for possibly a different medication to be prescribed for you. Keep the faith and keep us updated on how you’re doing!

    • Hi SF! Thanks for checking in. I truly appreciate all the prayers I can get, so please keep me on your prayer list! I think it’s important to share things that work in terms of new medications, pain management, etc., because patients don’t often have a chance to connect with each other. It’s been quite a journey, to be sure! Take good care, Ruth

  2. Marian Rich

    Ruth – I’m conducting a survey about specialty drugs used to treat multiple sclerosis. We are interested in speaking to patients about their experience with various medications, with an emphasis on Acthar Gel. I am interested in speaking with you (and other patients) for 20-30 minutes. If you are interested, please send me your email and/or phone number. Thank you so much.

    • Hi Marian, This comment disappeared into my spam box, so can you give me a little bit more information about your company? Glad to help if it’s research for MS patients. Take care, Ruth

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s