Acthar treatment: weeks 2 & 3

I have completed 3 weeks of my Acthar treatment for DM. 6 injections done, 19 to go!

Thanks to NORD, click here, my next two vials of Acthar arrived last week. This will keep the treatments going for another five weeks.  I wish Fed-Ex would give a smaller window than 8 hours for delivery, the vials have to be refrigerated on arrival (the doses do come in a big styrofoam cooler with arctic ice packs but signature is required, that makes sense since each vial is $30K!)

As part of my Acthar literature I was sent ahead of time, I received a treatment journal to detail my injections. This ensures I don’t miss treatment days and I move the injection site around my abdomen. To this end, I picture my stomach as a clock centered on my belly button and inject myself in the following order: 10, 2, 8, 4 and 12 o clock. At times like this I’m glad I don’t have six-pack abs. Having belly fat does make the injections easier! That said the last injection left me the biggest bruise yet, even though at the time the injection went pretty painlessly.

I am tolerating the Acthar well. The only side effect thus far is a weird taste to a lot of food I ate one day last week. My taste sensation has since returned to normal.

However I am progressively getting weaker, particularly in my legs and arms. I can no longer walk long distances without taking a break. My right hip is getting sore due to my leaning on that side and I got out my quad-cane to assist me. Click here  to read my article on that.

My arms too are getting weak. However I can still move them above my head pretty effortlessly. As mentioned before I do have to keep them extended a lot of the day as I get minor muscle pain when my arms are bent. The best way to describe it is the burn you feel after lifting weights.

I am also feeling more tired for longer stretches of the day. Whereas last week I would feel fine in the morning and tired by evening, this week I am tired by the afternoon and sometimes all day. I do have sleep apnea, for which I use a CPAP machine.

The good news is that, unlike before, I am not having any dysphagia issues and am eating normally. My weight is staying about normal. I usually weigh between 150 – 160 pounds. Back in 2007 my weight dropped all the way to just under 130 pounds, most of that muscle.

I have not shown any sign of the classic DM rash that I had before on my hands (Gottron’s Papules or sign) and eyelids (Heliotrope). Since my muscle biopsy in 2007 came back inconclusive, I wonder if I would have been diagnosed with Polymyositis if tested now.

live discussion: exercise

April 29, 2014
Exercise to reduce inflammation, increase strength and flexibility
Live Discussion

Helene Alexanderson, PhD, RPT, will answer your questions about exercise on Tuesday, April 29, at 2pm ET. (NOON for us in Mountain time zone)

Dr. Alexanderson, a member of TMA’s medical advisory board, is with the Dept of Neurobiology in the Division of Physical Therapy at Karolinska Institute in Sweden. She has written extensively on the role of exercise in reducing systemic inflammation and has worked with myositis patients to develop an exercise routine.

Next Live Discussion:

Rohit Aggarwal, MD, MS on “Ritixumab”
Friday, June 20 at 3 pm ET (1PM for us in Mountain time zone)

TMA members are invited to submit questions in advance of the chat.
You MUST be logged in to submit a question. To login go to http://www.myositis.org. Sign in is at the right hand corner.

When submitting questions, please be as brief as possible. If you have more than one question, submit them separately in the question window. Questions that are off-topic will not be answered.

Live discussions are a benefit of membership in TMA. If you’re not already a member, become a TMA member today to take advantage of Q & A sessions as well as many other member benefits. Membership is free.
The discussion transcript will be available immediately following the Q & A session. Visit the Live Discussion page under Community on the TMA homepage to view a complete list of past transcripts and upcoming discussions.

May 3rd meeting

Our next Colorado KIT Group is coming up soon!

Saturday  May 3rd  10AM-NOON

Swedish Medical Center,   Room PINE A   (501 E Hampden Ave.  Englewood, CO  80113)

Our group ambassador, John Mozer, has booked an exciting speaker for our meeting – Thanks, John!
Our speaker for the May 3, 2014 meeting is Barbara Douglas who is the Membership Coordinator for the J. Leonard Levy Family Wellness Center (located on East Belleview Avenue just east of Parker Road in Aurora, Colorado.)
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Barbara has been involved in the health care industry for 18 years and in addition to her position at the Wellness Center, she has her own nonprofit company called the Alliance for Healthy Aging (AHA).  She will talk to us about the programs and facilities at the Wellness Center, including their excellent gym and warm water therapy pool.  If time permits, Barbara will tell us a little bit about the activities of the AHA.
As a user of the Wellness Center and a Myositis patient, John will share with the group his experiences with this facility and staff, as well as how much he believes aqua therapy exercises in their pool have benefited him.
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We will also be voting on our group’s first EVER t-shirt & tote logo design for our 2014 TMA Conference attendees and our National Myositis Awareness Picnic in the Park event! We invite any group member or person affected by myositis to submit your design entry by emailing us at myositisco@gmaill.com.  Entry deadline is April 30th.
If folks want to go to lunch after our meeting, please RSVP via email. Nearby restaurants are The Copper Pot (bistro), The Mod Market (salads/sandwiches), or Patxi’s (Chicago-style pizza) – we’ll decide which location based on mood/interest that day.
Looking forward to seeing everyone!!!

now showing

All three of us are home on Fridays – Conor doesn’t have preschool, Mo doesn’t have work, and I don’t have anything I can’t do tomorrow. So it’s a great day for us to do family stuff. A nice kickstart to our weekend, a bonus day!

There are a lot of things we’d like to do together, but a lot of activities require a lot of walking or standing. Until Mo starts improving, we’re eliminating the more physical outings like zoos, museums, hikes/walks, etc.

Instead we are heading to the movies today.

Just because we can’t do outdoor activities like we used to doesn’t mean we can’t all be together. Especially when buttered popcorn and cartoon movies are involved!

Have a great weekend, Everyone!!!

cane and able

Today I welcomed back an old friend that I have squirreled away in my garage for the past seven years. Over time I have gotten rid of most of my medical assistance devices such as my wheelchair, raised toilet, and lift-chair. I am never going to get rid of my beloved quad-cane.

When I was first diagnosed with Dermatomyositis back in 2007, my quad-cane became my most used piece of medical equipment. Even when I had to use a wheelchair for moving outside the home, the quad-cane was indispensable inside. At first it gave me the stability to move up and down stairs. When that simple task became impossible, it gave me the ability to move between kitchen, bathroom and the temporary bedroom we set up on the main floor of our house.

My right hip is once again getting progressively weaker. This week it got to the point where I was leaning over on my hip and my right foot was pointing out to the side instead of pointing forwards. I was walking like a drunken crab on a rolling boat. My hip started to hurt. It was time to bring out the cane!

quad cane

Choosing the right cane for you is a conversation to have with your doctor and/or physiotherapist. For me a quad-cane offered a lot more stability over a single-point cane. But that stability comes at a price.

Pro: a quad-cane is self-standing which is important to remember as a fallen cane is difficult to pick up for those of us who struggle getting up from a crouched position.

Con: a quad-cane is heavier, which is something to consider if your arms are weak to begin with

If you decide on a quad-cane there are a variety of bases (how far the prongs are spread apart) to choose from. While a large-base cane is more stable, it is heavier and a lot less maneuverable (particularly up and down steps) than a small-base cane. I have a small-base quad-cane.

If you want to try using a quad-cane, there are a number of things to consider:

  • Ensure the cane is the correct height.  The cane handle should be at wrist height when you are  in your walking shoes with your arm fully extended by your side. Most canes have adjustable height settings.
  • Carry the cane in the opposite hand to your weaker foot/leg/side. While this might seem counter-intuitive at first, your arms and legs naturally swing opposite from each other. You want the cane to come forward when your bad leg comes forward.
  • If the base of the quad-cane is reversible, the wider prongs should be closest to you.
  • To prevent dropping the cane, consider attaching a cane hand loop.

 

It will take some practice to get used to it, particularly if your arm is weak. Click here for insturctions how to walk with a quad-cane.

You can buy a quad-cane at Walgreens.com, click here, or any medical supply store. Prices range from $30-$75.

at the library

Just got back from the library and we had to laugh at what we checked out.

We went tonight to return some checked out items at the Highlands Ranch Library and to get Conor’s free book, “Grumpy Bird”, from OneBook4Colorado. OB4C is a non-profit organization that is giving out 75,000 copies of “Grumpy Bird” to 4-year olds across Colorado! Click here.

Mo & I were talking about side effects of Acthar and mood swings are very probable – maybe “Grumpy Bird” will be a perfect “teachable moment”. Hahaha.

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While we were in the children’s section of the library Mo saw “Diseases Vol. 7 Polymyositis – Spasms” on an end display. What a coincidence! Here’s the page talking about PM:

imageLastly “The Big C: Hereafter” is the final season of one of my favorite shows. Since we cut premium cable (it was on Showtime) before I could watch the last episodes I’m SUPER excited!!! I know Cathy dies in the finale, stupid podcast ruined that for me, but I’m looking forward to some “embrace life for what it is” messages.

All in all a VERY successful trip to the library!!!

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.