Acthar treatment: week 1

As you know, last week was my first full week on Acthar.

There is a lot of good information on the official drug site, click here, on how to administer Acthar Gel. I must say they did a really good job on being thorough on the step by step instructions and videos.

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When I administer my shot I find it a lot easier to lay out everything ahead of time as pictured above:

  • Acthar vial warmed up to room temperature. Acthar must be stored refrigerated.
  • Alcohol swabs to disinfect the rubber top on the Acthar bottle and the injection site.
  • 1ml syringe (which is my dosage)
  • 20 gauge needle to extract the Acthar. It is a bit syrupy.
  • 25 gauge needle to inject myself. The kit came with a 23 gauge needle which I discarded for the smaller and less painful needle.
  • Cotton balls to break up the medicine once injected under the skin.
  • Gauze pads and Band-Aid in case I draw blood. In this case I would use a different injection site.
  • Needle disposal kit. Some of these don’t come with the kit and I purchase myself from Walgreens.
  • Don’t forget if you have a Flexible Spending Account, most of these items are eligible.

I inject myself subcutaneously (beneath the skin) into my abdomen. My rheumatologist thinks this is a very effective way of delivering the drug. Other options are subcutaneous injections into the upper arm or leg and intramuscular (into the muscle) of the bicep or quadricep . If you are unable to give the shot to yourself you can have someone else do it for you. In addition the Acthar Support and Access Program (A.S.A.P) does provide, at no cost, a skilled practitioner to show you how to do the injection.

The injections are getting a lot easier with practice. I still have a bruise from the 1st injection, but none since. Also the injection site might be a bit tender for a couple of days. I inject twice weekly, on Thursday and Sunday afternoons. I usually do it sitting on the side of the bed so I am not slouched.

As to how effective the drug is, it is too early to say.

Certainly I am getting less muscle aches in my arms. My legs are still getting weaker. Walking upstairs is getting more difficult. I usually feel pretty good in the morning, and even better the day after my injections. By evening time I feel myself fading and my walking more deliberate. Also by evening I feel the need to keep my arms extended as much as possible. I am not feeling any side-effects to the drug this far.

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2 thoughts on “Acthar treatment: week 1

  1. Mo,
    I applaud your braveness and determination to try this new drug, Acthar. I personally was always afraid of shots as a child. I am better about it now but can’t imagine giving myself a shot…so proud of you for being able to do this!

    Love,
    Karen

  2. Hello Mo. Good luck!!! We are all sending our best wishes that the Acthar works for you. I gave myself allergy shots several years ago and after the first few times, it got a lot easier to do. John.

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