Lupus Awareness Month Fact 3

Butterflies of Hope – Flight of the Butterflies

Spreading Lupus Awareness One Butterfly at a time
Let this butterfly flutter all over cyberspace!

May 3rd Lupus Fact

The history of lupus begins in 1828 when the French dermatologist, Biett described the disease. For the next 45 years, studies of the disease showed nothing more than descriptions that emphasized skin changes. In the mid 1800’s, Pierre Cazenave was the first person to have a comprehensive description of lupus. The disease was named because of a wolf-bite shaped rash (the butterfly rash) that appears across the nose and cheeks of many lupus patients. “Lupus” is the Latin word for wolf.

This is your third Butterfly of Hope.
We need awareness! We need a cure!
Encourage everyone you know to let it FLY!

LupusInColor #ButterfliesofHope #FlightoftheButterflies #SpreadLupusAwareness #LupusAwarenessMonth

Lupus & Hydroxichloriquine

Many may not understand how Hydroxychloriquine (Plaquenil) can help lupus warriors. There are three anti-malarial drugs that are prescribed for lupus symptoms. Hydroxychloroquine (Plaquenil) is the most commonly prescribed because it is generally believed to cause fewer side effects; chloroquine (Aralen) has a reputation for more serious side effects, but it may be prescribed in situations where hydroxychloroquine cannot be used. Quinacrine (Atabrine) is another alternative, but it is prescribed less often because it can sometimes cause a yellow discoloration of the skin. It is sometimes given in addition to hydroxychloroquine if the patient does not respond to Plaquenil alone. Quinacrine tablets are no longer manufactured and can only be obtained through a compounding pharmacist. Your doctor will advise you on how to obtain quinacrine if this becomes your advised method of treatment.

Treating Lupus with Anti-Malarial Drugs

  • Hydroxychloroquine (Plaquenil)
  • Chloroquine (Aralen)
  • Quinacrine (Atabrine)

What are anti-malarial drugs, and why are they used to treat lupus?

Hydroxychloroquine (Plaquenil), chloroquine (Aralen), and quinacrine (Atabrine) are medications that were originally used to prevent or treat malaria. However, during World War II it was also found that these medications were effective in treating the symptoms of lupus. Specifically, anti-malarial medications have shown to improve muscle and joint pain, skin rashes, pericarditis (inflammation of the lining of the heart), pleuritis (inflammation of the lining of the lung), and other lupus symptoms such as fatigue and fever. These medications may also prevent lupus from spreading to certain organs, such as the kidney and central nervous system (your brain and spinal cord) and may help to reduce flares by as much as 50%. Plaquenil and other anti-malarials are the key to controlling lupus long term, and some lupus patients may be on Plaquenil for the rest of their lives. For this reason, you can think of anti-malarials as a sort of “lupus life insurance.”

Hydroxychloroquine is taken in tablet form, with or after food.

A doctor will advise you about the correct dose. Usually you will start on a full dose of 200–400 mg daily, and later your doctor may reduce this. When your condition is very well controlled you may be advised to take hydroxychloroquine only 2–3 times per week.

Hydroxychloroquine doesn’t work immediately. It may be 12 weeks or longer before you notice any benefit. Because it’s a long-term treatment it’s important to keep taking hydroxychloroquine unless you have severe side effects:

  • even if it doesn’t seem to be working at first
  • even when your symptoms improve (to help keep the disease under control).

Side effects and risks

Side effects aren’t usually common. However, in some people hydroxychloroquine can cause:

  • skin rashes, especially those made worse by sunlight
  • feeling sick (nausea) or indigestion
  • diarrhea
  • headaches
  • bleaching of the hair or mild hair loss
  • tinnitus (ringing in the ears)
  • visual problems.

There’s a small risk that hydroxychloroquine can damage a part of the inside of the eye called the retina. And this increases with long-term use and higher dosage.

Research has shown that your risk of developing retinopathy is higher the longer you are taking Plaquenil. In fact, the incidence of retinal toxicity rises sharply in people that have taken it between 5 and 7 years. As a result, baseline testing should occur within the first year of taking the drug and then annually at the five-year mark. Personally, we recommend a full evaluation every 18-24 months during the first five years and then annually after five years.

It is recommended that every single person on Hydroxychloriquine (Plaquenil) get a visual field 10-2 test, plus one of the three other highly sensitive screening tests: the FAF (fundus autofluorescence imaging), the SD-OCT (spectral domain optical coherence), or the multifocal electroretinogram (mfERG)

Sources: https://www.hopkinslupus.org/lupus-treatment/lupus-medications/antimalarial-drugs/

https://www.versusarthritis.org/

#LupusInColor #educate #inspire #encourage #empower

MIDWEEK REFUEL 12-25

MIDWEEK REFUEL 12-25
HOPE H.ealing O.ver P.ain Everyday

The holidays are so hard to deal with as you battle lupus. You may be battling depression, grief, anger, or sadness. It’s so easy for someone to say just think about the good in your life to get over it all. The reality is, it’s not that easy. What I can tell you is this, sometimes you won’t be able to get over the hard times.  Especially during the holiday. It will take you releasing those feelings just to get through some tough memories and moments. It will take you realizing that those feelings aren’t bad, they are just a part of an experience you have had. It will take you a few moments to get out of your feelings and into your living in the now beyond it all. Take the time to get through and then make time to live beyond. As I said it will not be easy but it will surely be worth it for you in the long run. Just by making a conscious decision to make life liveable makes a difference in the way you walk through your fires. These issues may never go away but you can lessen the effects they have on your life. Through it all, make sure you always have HOPE. HEALING OVER PAIN EVERYDAY!

This has been your MIDWEEK REFUEL for Christmas December 25, 2019. Whatever you do for the rest of the night, make sure you are educated, inspired, encouraged and empowered beyond the pain and issues of lupus. #educate #inspire #encourage #empower  #LupusInColor #MidweekRefuel

Survive The Holidays

Seven Tips to Survive the Holidays With Lupus

The holidays can be fun, but they can also be stressful. While we all are getting so excited about seeing loved ones and hosting events, there can be real fears that can and will bubble up in side of us. There may be fears of missing out, getting sick, or not being able to reach expectations put on us by family members or friends. The anxiety can be high, the worry can be off the charts and the depression may increase.

It’s important as we battle lupus to take it one step at a time. To not become overwhelmed and to not overdo it. If you already find yourself in a crazed frenzy of the holidays, it’s time to take your life and holiday sanity back.
Below are some helpful tips that may help you in finding your calm in the midst of the holiday storm.

  1. Remember, you don’t have to look at the whole forest. You don’t even have to look at a whole tree. Focus on the branch, the leaf, the bark. Breaking things down into smaller, manageable tasks is a great way to get started.
  2. Make a realistic list. Divide it between URGENT tasks that must get done, stuff that can wait a few days, and things that you should do, but that can be done at any time.
  3. Setting a time limit with a built in reward can be a great motivator. For example, put the dishes away while the tea kettle boils. Do a small task, like writing a thank you note, as you can while you wait for food to finish cooking.
  4. Ask for help – Reach out. Ask others for help. It can be scary, but more often than not, people are grateful to help. People like to feel useful.
  5. Take a deep breath. Take another. Drink some water and open the blinds. Put on fun music. Making your environment welcoming will help get you moving and ready to start the day.
  6. Say NO. This one is so hard for so many people especially lupus warriors. If you feel yourself getting stretched thin, or there’s absolutely no way you can do one more thing, you can say NO. Remember you are not responsible for another person’s bad time management. You don’t have to be a “Yes” man or woman to try and please others.
  7. PACE YOURSELF AND REST. This is hard especially for lupus warriors that may be feeling better and have some energy. Warriors tend to overdo it and then have to pay for it later on. I know many are excited, but it’s important to pace yourself and rest before you overdo it and end up in a bad flare.

Having lupus is challenging and when the holidays roll around it can be overwhelming and difficult to handle. The main thing to stay holiday flare free is to make it a collaborative effort. Don’t think you have to do it all yourself or make an extravagant party that will take you months to recover from. Let your need for perfection go. Remember, your first priority needs to involve doing what you can to protect your health. Don’t stress out and overwork yourself and you will have a nice holiday season.

#LupusInColor

May 17 Lupus Fact

Butterflies of Hope
Flight of the Butterflies
Spreading Lupus Awareness One Butterfly at a time
Let this butterfly flutter all over cyberspace!
May 17 Lupus Fact

“Lupus headache” refers to a specific type of headache that occurs with Lupus warriors where the disease is active and there is actual inflammation around the brain that causes discomfort and headaches.

This is your seventeenth butterfly of hope.

We need awareness and a cure!

Encourage everyone you know to let it FLY!

#LupusInColor #ButterfliesofHope #FlightoftheButterflies #SpreadLupusAwareness

May 11 Lupus Fact

Butterflies of Hope
Flight of the Butterflies
Spreading Lupus Awareness One Butterfly at a time
Let this butterfly flutter all over cyberspace!

May 11 Lupus Fact

About 50 percent of people with lupus have antiphospholipid antibodies. Antiphospholipid antibodies interfere with the normal function of blood vessels and can lead to narrowing of the blood vessels or blood clots. These complications can lead to stroke, heart attack, and miscarriage.

This is your eleventh butterfly of hope.
We need awareness and a cure!

Encourage everyone you know to let it FLY!

#LupusInColor #FlightoftheButterflies #SpreadLupusAwareness #LupusFacts

May 9 Lupus Fact

Butterflies of Hope
Flight of the Butterflies
Spreading Lupus Awareness One Butterfly at a time
Let this butterfly flutter all over cyberspace!

May 9 Lupus Fact

Lupus is a disease of flares and periods of quiescence (quieting).

Lupus flare-ups can be mild, or they can be severe. At least 75% of people with lupus have arthritis and skin rashes. Half have kidney problems. Cardiovascular issues can occur more in people with lupus and this with lupus are also more vulnerable to infection than most people.

This is your ninth butterfly of hope.
We need awareness and a cure!

Encourage everyone you know to let it FLY!

#LupusInColor #FlightoftheButterflies #SpreadLupusAwareness #LupusFacts

May 7 Lupus Fact

Butterflies of Hope
Flight of the Butterflies
Spreading Lupus Awareness One Butterfly at a time
Let this butterfly flutter all over cyberspace!

May 7 Lupus Fact

Lupus can be difficult to diagnose as the symptoms come and go and mimic many other illnesses. It can take 3-5 years for a firm lupus diagnosis. Lupus is NOT AIDS. Lupus is NOT cancerous, NOT contagious or rare.

This is your seventh butterfly of hope.
We need awareness and a cure!
Encourage everyone you know to let it FLY!
#LupusInColor #FlightoftheButterflies #SpreadLupusAwareness #LupusFacts

LIVIN’ La Vida Lupie

April 27, 2019 • 2p-4:30p

Glen Allen Library Small Conference Room

Butterflies of Hope Lupus Support Group

LIVIN’ LA VIDA LUPIE

Practicing living a mindful Peaceful life beyond lupus.

Lupus Warriors: Attend a great encouraging support group in a warm, caring, fun environment for you, your family members, caregivers, and loved ones. Come out & share experiences & methods of coping with insights into living well with lupus. #LupusInColor

It’s okay

Too many times warriors beat themselves up and feel guilty for feeling good and walking in that power. They don’t want to get too excited for fear of the moment changing. As you beat lupus, you are allowed to be okay. Sometimes it might feel like you don’t deserve to feel okay, but you do! You deserve happiness beyond lupus. #LupusInColor