Sunday, November 3rd
Another beautiful morning...the daylight savings time changed overnight but my body will do what it wants. I woke up at 5am.
So thankful it wasn't 4am. I woke up with puffiness under my eyes and a lot of matter. :-(
Today, I am staying home from church because of the increased prednisone. It's cold and flu season and I can get things so much easier with my immune system suppressed. :-(
I reviewed my last blog and know that sometimes my blogs have misspelled words and wrong punctuation. You'll have to forgive me for my mistakes :-( I don't like to admit it but my brain just doesn't work like it used to... :-( I have no control over it. :-(
My Autoimmune conditions do their damage by causing inflammation.
My Inflammation always causes Loss of Muscles, Profound Fatigue, Pain, Rashes/Itching all Over(mostly my head) Eye Puffiness, Blurry Vision, Dry Eyes/Drymouth or Yeast in my Mouth, Tongue Numbness, Tingling Hands and Feet, Hair Loss, Brain Fog or Goes Blank, Temperature Dysregulation (too hot, too cold, both at once!), and Many More. :-(
There was a press release yesterday from the Mysitis Association Newsletter that I may have a new treatment option to consider for DM.
Acthar is Now Available as a Treatment for Dermatomyositis and Polymyositis
Acthar is made by a company called Questcor Pharmaceutcals. A paper detailing the recent treatment of five dermatomyositis and polymyositis patients with Acthar was recently published. We've put together a Q&A to enable you to be more informed about this treatment option.
What is Acthar?
H.P. Acthar Gel, commonly known as Acthar, is a prescription medication that is FDA approved for the treatment of dermatomyositis and polymyositis. Acthar contains the hormone ACTH, which stands for adrenocorticotropin ("a-DRE-no-cor-ti-co-tro-pin"). Acthar is a gel when refrigerated; at room temperature, it changes to liquid form, ready for injection.
Why haven't I heard of Acthar before?
Acthar was originally approved by the FDA in 1952. It is approved for use in 19 different conditions, including dermatomyositis and polymyositis.
Questcor is a small specialty pharmaceutical company based in Hayward, California. Questcor acquired Acthar from Aventis in 2001. Aventis was going to stop manufacturing Acthar when Questcor stepped in and purchased the product. The company then made a major investment in the product's manufacturing capabilities to ensure Acthar would be available to anyone who needed it. Questcor also started actively researching Acthar to determine what patient populations would benefit most from the drug.
Questcor is now marketing the product in four treatment categories: infantile spasms, MS relapses, proteinuria related to nephrotic syndrome (a kidney disease) and now dermatomyositis and polymyositis. The company is focused on educating physicians about Acthar and conducting more research into how it works.
How does Acthar work?
Acthar is designed to provide a prolonged release of the medication after it is injected. Acthar is not a steroid; it works by helping your body produce its own natural steroid hormones, such as cortisol, corticosterone, and aldosterone.
How is Acthar administered?
Acthar is an injection that can be given subcutaneously (beneath the skin) or intramuscularly (into the muscle). Acthar can be used when and where it is most convenient for you. It can be self-injected or given to you by a friend, family member, caregiver, or your healthcare provider. Questcor, the maker of Acthar, has a free service that allows you to have a licensed nurse visit you at your home and train you on how to self-inject.
What patient is right for Acthar?
Only your healthcare provider can make that determination. Typically, Acthar is used when other medications do not completely relieve all of your symptoms. It can also be used if you are having difficulty dealing with the side effects of other medications used for dermatomyositis and polymyositis.
Are there any studies showing Acthar's effectiveness as a treatment for PM and DM?
There was a recent study published in the peer-review journal Drug Design, Development and Therapy on a retrospective case series evaluating Acthar in the treatment of PM and DM. Acthar was administered to five patients who had previously failed multiple steroid and immunosuppressant treatment regimens. The patients received injections of Acthar over the course of 12 weeks or more. Improvement in PM and DM symptoms related to disease exacerbations was seen in all five patients. Symptom improvements included increased muscle strength, resolution of disease-related skin manifestations and improvements in the ability to perform tasks associated with daily living. All of these patients tolerated the treatment well with no significant side effects reported. The paper, "Treating refractory dermatomyositis or polymyositis with adrenocorticotropic hormone gel: a retrospective case series," was authored by Dr. Todd Levine, M.D., Co-Director of the Neurophysiology Department at Banner Good Samaritan Medical Center, Assistant Professor at the University of Arizona in Neurology, and Member of Phoenix Neurological Associates. Dr. Levine also serves on the Medical Advisory Board of The Myositis Association.
How safe is Acthar?
ACTH (the hormone within Acthar) has a well-established safety profile . Common side effects of Acthar are similar to those seen with steroid medicines and may include fluid retention, change in glucose tolerance, increased blood pressure, behavior or mood changes, increased appetite, or weight gain.
Can I get financial assistance for Acthar?
Questcor, the maker of Acthar, has the Acthar Support & Access Program (A.S.A.P.) which offers a wide range of support. A.S.A.P. is a free service provided by Questcor that works directly with your healthcare provider to secure the best possible insurance coverage for you with the lowest possible patient copay. Typical copayments for Acthar have been, on average, $50 or less. A.S.A.P offers 100 percent copay assistance for qualifying patients. Acthar is available at no cost for qualified uninsured or underinsured patients through Questcor's patient assistance programs. To learn more about A.S.A.P. visit www.acthar.com or call A.S.A.P. at 1-888-435-2284.
How do I obtain Acthar?
Once your doctor has prescribed Acthar, the order is processed at a specialty pharmacy that delivers Acthar directly to your home.
Where can I get more information?
For more information on Acthar, please consult your healthcare provider. Questcor supplies information on Acthar at www.acthar.com.
I will check into this medication to see if I can cut down on some of my other medications. I get so tired of taking so much medication... :-(
My Neurologist, up at the Muscular Dystrophy Clinic, appointment is scheduled for Monday, November 11 and depending on on how my next couple of days goes, I may go to see Dr Danning, the rheumatologist, before the end of this week.:-)
My Drs have been so good to me. I really appropriate all they do.
So thankful for all I can do...
-------------------------
Today's Bible Study
By Dr. Charles Stanley
Some choices should be based solely on Scripture. We don't need to pray about whether or not to commit adultery, steal from our employer, or avoid paying the taxes we owe. For each of these, God has clearly laid out instructions for us in His Word. But on areas where Scripture is silent, the Holy Spirit desires to guide our steps along the specific path the Father has chosen for us.
For instance, whom should you marry? Which career should you pursue? What home should you buy? True, the Bible gives a few guidelines on these topics. It tells us to marry only fellow believers, to steer clear of jobs that require unethical behavior, and to avoid overspending. But we also need specific guidance from God in these areas.
The Prompting of the Holy Spirit
After we have received Jesus as our Savior, the His Spirit dwells within us to direct our steps—the choices and decisions we should make, the work we should undertake, and the new attitudes and opinions we should adopt. Jesus said that one of the primary roles of the Holy Spirit is to guide us into all truth (John 16:13).
When God wants to clarify the next move He has for us or lead us in a new direction, He often uses what I call a "prompting." This is like a flash of lightning in a person's spirit that creates an almost immediate knowing of which way to turn, what to do, or how to respond. It comes with a deep assurance and confidence that the choice or decision is right.
Whenever we sense the Holy Spirit's prompting, our all-wise God is communicating that He loves us enough to direct our steps in a particular situation. Much of what the Spirit directs us to do involves a potential loss or gain of something we deem important—either for ourselves or for others.
There are things we should avoid, discard, ignore, or put away. There are things we should reach out and receive, pay attention to, or act upon. On occasion, the Spirit also prompts us not to act or speak. At times I have clearly felt the Holy Spirit instructing me, "Sit down and don't say a word." Because His guidance differs moment by moment and person to person, it's vital for each believer to look to Him for guidance.
How do you develop sensitivity to God's leadership? Ask Him to increase your ability to discern His will in each situation. It's His work, not yours, to impart sensitivity. When you experience His prompting, act on it immediately. Don't second-guess what God tells you to do. Those who fail to act on the Holy Spirit's gentle nudges never learn how to follow His leading.
If you have heard correctly, you will feel a growing peace and confidence regarding your choice. If you have heard incorrectly, you will feel unrest in your spirit. As with most things in life, we learn by trial and error.
An Example of God's Prompting
I knew a young woman who was facing a decision about which college to attend. She had narrowed the choices to four Christian schools. When she visited the first two, she sensed a clear "no" from the Holy Spirit. After just a few hours on each campus, she felt ill at ease. Although these were good schools with excellent reputations, she knew in her spirit that they were not right for her. It wasn't anything a specific person did or said; she just felt restless in her heart.
The last two colleges, however, seemed almost equal. She finally decided to attend the college that was closer to her home. Right before bed one night, she announced her choice to her family. She later recounted what happened: "I was awake most of the night. I tossed and turned and felt miserable. I had a nagging sense that I was making a mistake."
The next morning, the young woman confessed to her mother, "I think I made the wrong choice. I'm changing my decision." She felt peace all day long, and by evening, she knew she had made the right choice. After one semester at the college, she wrote a letter to her parents, saying how happy she was at the school and expressing gratitude that instead of deciding for her, they had encouraged her to seek God's direction.
This young woman had experienced a series of promptings that led her to the final decision, which was God's best for her. Now let me ask you: Do you believe this young woman has a much clearer understanding about how the Holy Spirit speaks in the human heart and prompts a person to move into right actions or decisions? Absolutely. She has learned a tremendous lesson about what it means to hear from God and to walk wisely.
If you are a believer in Christ Jesus, the Holy Spirit lives inside you to provide step-by-step guidance into God's personalized plan for your life. Will you sometimes misunderstand His guidance? Yes. But if you seek daily to obey God's still, small voice, you will experience His very best.
Adapted from "Walking Wisely: Real Guidance for Life's Journey" (2002).
