WHAT IS LUPUS?
Lupus is widespread and chronic autoimmune disease that, for some reason, causes the immune system to attack the body’s own tissue and organs, including the joints, kidneys, heart, lungs, brain, blood or skin. Lupus is one of America’s least recognized major diseases, despite the fact that hundreds of thousands of Americans suffer from it. Ninety percent of those affected with lupus are women between the ages of 15-45, and of those, two-thirds are people of color. It is far more common than well-known diseases such as leukemia, multiple sclerosis, muscular dystrophy and cystic fibrosis combined. Lupus causes a wide variety of devastating symptoms. It can affect nearly every organ in the body with no predictability, causing widespread infections and inflammation. As of yet, lupus has no cure but advances in the medical and research community, as well as, treatments are making steady progress. This blog will focus on one such treatment, H.P. Acthar Gel, and will delve into the benefits, risks, and questions you should ask your doctor before starting it.
WHAT IS H.P. ACTHAR® GEL?
H.P. Acthar Gel is a FDA approved medication that contains a highly purified and naturally occurring hormone called ACTH (adnreocorticotropic). It is believed to work by helping the body to stimulate production of its own steroid hormones, like cortisol. Cortisol is one of the hormones produced by the adrenal glands to help the body ward-off and control inflammation. Since lupus and it’s overlap condition rheumatoid arthritis are inflammatory conditions, through this process, it can be used during a flare or as a maintenance therapy treatment in some cases of SLE and RA.
WHAT YOU SHOULD KNOW BEFORE STARTING H.P. ACTHAR® GEL?
You should not take Acthar if you have:
- Scleroderma or bone density loss
- A infection (bacterial, fungal or viral)
- Ocular issues
- Had recent surgery
- History of stomach ulcers or currently suffering from ulcers
- Cardiovascular problems
- Hypertension (high blood pressure)
- Recently received a vaccine
- If you suffer from adrenal issues such as Cushing’s syndrome (too much cortisol) or Adrenal insufficiency or Addison’s Disease (too little cortisol)
It is very important to be open with your doctor about any nonprescription medication, supplements and vitamins you are currently taking. Additionally, speak your healthcare professional if you have any of the condition listed above or any other health concerns.
WHAT ARE THE BENEFITS?
A 2016 article from Lupus News Today stated some significant positive findings from patients in the Phase 4 Acthar® study. Their findings indicated a drop in corticosteroid use in all groups tested who took Acthar, from 67% to 54% among those with RA and from 73% to 58% among those with SLE. These findings led doctors and researchers alike to believe patients may benefit from treatment from Acthar Gel when other therapies have been unsuccessful, and can ultimately help with a reduction of steroid use and disease activity. Therefore, ACTH(1–39) gel could be considered as a therapeutic option for the treatment of lupus flare in patients who may be in need of treatment alternatives.
Here some other helpful facts about Acthar Gel:
- It is not a steroid
- It is FDA approved to treat lupus flares and for disease maintenance.
- It can be used for lupus overlap diseases and other inflammatory autoimmune diseases such as rheumatoid arthritis and psoriatic arthritis.
- It is given as an injection under the skin or into the muscle. You can self-inject, or have a caregiver, nurse or doctor assist you.
- Though it is considered a “gel” at room temperature, it changes to an injectable liquid.
- Only your doctor will know if Acthar is right for you and how much you should take depending on the severity of your lupus/RA symptoms.
- Because every person with lupus is different, responses to Acthar treatment can vary from person to person.
WHAT ARE THE SIDE EFFECTS?
The most common side effects include:
- Fluid retention
- Changes in blood sugar
- Increased blood pressure
- Behavior and mood changes
- Changes in appetite and weight
Note: the side effects are similar to that of taking corticosteroids. The above side effects are not all the possible side effects of Acthar. Tell your doctor right away if you experience any side effect that is bothersome. It is always important to call your medical care professional or pharmacist about questions regarding side effects.
Acthar is approved by the FDA to treat lupus flares and control disease activity. It is something your doctor may suggest if you cannot tolerate other lupus treatments or have found them unsuccessful. Though still somewhat of a mystery regarding how it specifically works, it has been shown to reduce steroid use. If your doctor has suggested trying Acthar® Gel is an alternative treatment, and you have questions or concerns, here are some resources to help at no cost to you from the H.P. Acthar website:
Acthar Support & Access Program (A.S.A.P.)
- Works directly with your doctor and insurance company to help you get the best insurance coverage with the lowest possible copay
- Offers Acthar at no cost if you qualify
- Arranges delivery of Acthar
Home Injection Training Services (HITS)
- Schedules an injection training visit from a nurse
- Helps you get comfortable with the injection process
- Includes training a care partner if you are not going to self-inject
Patient & Acthar Coaching Team (ActharPACT)
- Offers a toll-free 24-hour nurse helpline
- Gives you tips to help you cope with your lupus
- Provides follow-up materials with useful information about Acthar treatment by email or mail
*All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus. **All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your medical provider with any specific questions or concerns.
Author: Kelli Roseta
All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.
All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.