Placement of Priorities

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Hello once again!

As the title implies, this post is about priorities and listening so they can be placed properly. I have been quite depressed as of late. My lupus is really ugly right now. I am having major issues with my gi tract from top to bottom. I am dealing with drama within my family. I am back on prednisone. Basically, I cannot eat well, cannot sleep well, and am a round moon face sicko.

I had a bright spot yesterday I thought. My rheumatologist wants me to start Benlysta infusions. I was in the drug trial with real drug and it helped me a lot. Once it was approved though, the drug trial ended. So, he wants to do these infusions to try for remission. Remission is a word I have not heard for years!

Back to the story. My rheumy’s nurse called and said she had done the legwork and for me, my insurance would only cover these at an 80/20 ratio. In other words they would pay 80% and I would pay 20%. Ok, what does that mean? It means it is cost prohibitive for me. However, she next tells me that my 20% equals $250 per transfusion. Still cost prohibitive for me. Now she tells me that there is this gateway program that will pay for the med itself. So, I only have to pay the office visit ($40) to begin infusions and as for the $250, I can be billed and pay as I can! Wow! That is great news! Finally it is looking like I might get some type of relief from this all pervasive pain!

So, I decided to share this good news with my husband. I didn’t even finish the details before he exploded and told me that there is no way we can afford this! He also told me to cancel finding out about any thing else related to this! He told me I was wrong to even consider it. Seriously! He said it would be another bill and that we cannot take this on.

He stormed out into his garage room. I was numb. I really was in pain emotionally now. I thought why try anymore? You know, if I had cancer would he do the same thing about a med? Is he really so self centered and blind that he cannot see or comprehend how insensitive he was? The answer, sadly, is yes. I saw a new side of him yesterday. It is a powerful revelation.

I have been here to help him overcome HIS issues and done whatever was necessary to make sure he gets care he needs. You know, the Golden Rule. I saw yesterday that no matter how much I give he will only take. He truly does not seem to care about any of my issues at all. He went so far today to say he didn’t want to hear anything about my call to another doctor regarding a different issue. Guess I know where I stand.

A friend of his passed away yesterday afternoon. (This was after our conversation above had occurred). Now today, he told me his friend isn’t having s funeral. His wishes were to be cremated and his wife was to hold a sort of wake. My husband, the recovering alcoholic, told me he was going and would have a drink for his friend! Wow! It is almost like he was waiting for an opportunity to drink. He assured me he was going to stay sober but only have that one drink. Uh huh, right. He might delude himself but I have seen this behavior before. I tried to reason with him about slippery slopes and how he was all but dead himself a month ago. He refuses to listen. Well, I tried.

I came back here with assurances of sobriety and caring for my well being. Bait and switch. Jokes on me. Bad day. Sorry to bring anyone down but this is my reality right now. I will survive. I will have to go on chemotherapy if Benlysta is off the table. Oh well, I actually want to live so we will see how this plays out. I am just so sad to see and hear how my issues do not matter to him. Actions speak louder than words so if his words match his actions then I am alone on this painful island. Well crap.

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Prednisone Activity

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It is that time of the year again, the time when the weather cools at night and the air is filled with the scents of fall. It is a beautiful time of the year! I love this time of the year! Unfortunately, my body doesn’t like it. The cooler weather triggers flares in many lupus patients. I am one of those patients.

As most of you know by now, I am in a major flare. Fully. I have joint pain, fatigue, blisters in mouth and nose, malar rash, and feel like poo. I called my rheumy and he called me in the poison I hate. Prednisone. Yes, it can work miracles, especially for us lupies. I just hate how my body responds to it. For the first two days, I was still miserable. Days three and four led to a flurry of activity as the prednisone kicked in and the adrenaline kicked in too. Of course, with the increase in activity, it also brings setbacks in other ways.

My body reacts to prednisone in a variety of ways. I almost always get the malar rash breakout when I first start it. Next comes the MAJOR hot flashes! I mean MAJOR! No sleep is another one. I get back spasms too, dunno why for those. Now add in intense itching, extreme hunger and insomnia, and well, you get the picture. Sure, it helps me fight lupus! It gives me energy and shows me how I can feel good sometimes. The minuses are many though and I hate this medication!

Alright, I know, it is a miracle drug that keeps many of us lupies alive. I understand that. I just wish science could find some other medication that does not have so many side effects and yet can stop a flare in its tracks! Until then, we have to get the different poisons, aka medications, and pray for the best.

I am thankful for the meds because seriously, they do help stop the major effects of this disease. The drawbacks come in the form of osteoporosis and others. I know this personally.

So, I have been MIA for a bit because I am either tearing into a project with this energy from the prednisone, or I am sleeping for 24 hours catching up. Such is life in the life of a lupus patient.

The Ride is Getting Bumpy

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I was online earlier tonight talking about how much I have been getting done since I am back on prednisone. I was so happy. I have been accomplishing many of the things on my to do list. I really need to do these things because we are in process of moving into our house and selling our travel trailer and golf cart. A lot of things on my plate. Yeah, I have pleurisy and/or costochondritis. Yes, it hurts. It is getting better each day though. Yay!

Now for the rest of the story… not long after I bragged about feeling good, the pendulum swing changed direction and I was forced to rest in my recliner. I am having pain in my hips and my back. Calcium sucking prednisone is depleting it as I write this.

I guess the biggest thing that has happened is that I saw what I used to be like. These past few days I felt like I should be feeling for my age! I was able to do things that normally take me forever, and do them fast and efficiently. It is sad to realize just how much this disease has taken from my life. I know once I am off the precnisone, things may return to the way they were previously. It is depressing to think about after this glimpse of normalcy. I hate you so much wolfie!

How cruel it is to feel good and enjoy it only to have it taken away again. Yeah, I really am not wanting to go back to that pain and feeling like I am not a whole person. I like being able to get out of the chair and walk into the kitchen and washing the dishes (by hand). I have cooked and cleaned. I have packed and unpacked. I have enjoyed being outdoors watching hubs working on his car. I mean, I was normal. It was great!

I do know the old things are coming back to taunt me after these great days. How do I know you may ask? Because I am in pain now, while still on prednisone. The boomerang effect is occurring. This false sense of well being that prednisone gives me always has a backlash in the end.

I do not think I am the only one this happens to. I have talked with others with this disease and they have had similar experiences as well. When you taper from a high dose to the smaller doses, your body does this boomerang. You start feeling like crap again. You want the higher dosage so you feel good again. It is a cruel thing indeed.

Everytime I am on prednisone, I gain weight in my stomach and face. I get the moon face. I break out in a malar rash (not sure why), and I am one moody person. Despite these not so nice side effects, I like this feeling of well being. It is a sad thng indeed to want to look like a freak and feel good. It is an exchange I guess.

As I go from this high dose back to reality, I hope I can be gracious and kind again and deal with all that comes my way. I will continue this journey and I hope I can do that with dignity and grace. Keeping my head up and fighting the wolf! I may have lupus but lupus will not have me!

Prednisone, my enemy and friend

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I am now getting into the prednisone arena where insomnia is happening. Prednisone is not a nice drug. It makes you swell up, gain weight, and have a terrible moon face. Don’t get me started on the irritability as well. However, it is also a friend in that it helps us to heal and get over a flare. It can save our lives when our body is fighting itself. So many good and bad things about it. The best thing is that it is better than not having it at all.

Common medications for lupus

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These medications will vary from person to person because lupus is different in each individual and only your doctor can decide what is the best line of treatment for your symptoms. This is just an overall guide. Some people will never have to take most of these drugs while others may have to take most of them at some point in their disease. This information is from the Lupus Foundation of America’s web page. Please refer to their page for more information.

Medications to Treat Lupus Symptoms

Anti-Inflammatories

Anti-inflammatory medications help to relieve many of the symptoms of lupus by reducing inflammation and pain. Anti-inflammatories are the most common drugs used to treat lupus, particularly symptoms such as fever, arthritis or pleurisy, which generally improve within several days of beginning treatment. For many people with lupus, an anti-inflammatory drug may be the only medication they need to control their lupus.

  • Aspirin is inexpensive and available over the counter. It has pain-reducing, anti-inflammatory, and anticoagulant (blood-thinning) properties that can control some of the symptoms of lupus. However, aspirin can cause stomach irritation.
  • Acetaminophen, known to most people as Tylenol®, is also used to reduce pain. Although it causes less stomach irritation than aspirin, acetaminophen does not help with inflammation and cannot control any of the disease activity of lupus. Most people have no side effects when taking Tylenol, but in rare cases acute liver failure has occurred.
  • Non-Steroidal Anti-Inflammatory Drugs (NSAIDs) suppress inflammation and are especially useful for joint pain and stiffness. Examples of NSAIDs are ibuprofen (Motrin®), naproxen (Naprosyn®), indomethacin (Indocin®), nabumetone (Relafen®), and celecoxib (Celebrex®). People often respond better to one particular NSAID than another, so you may need to try several different products to determine the most effective one for you.

Like aspirin, NSAIDs can cause stomach irritation. NSAIDs may also cause serious gastrointestinal (GI) complications, such as a bleeding ulcer. To reduce the chance of these problems, NSAIDs are usually taken with food, milk or antacids, or may be accompanied by other medications such as misoprostol (Cytotec®), omeprazole (Prilosec®), lanzoprazole (Prevacid®), and others.

Side effects of NSAIDS, such as abnormal urine test results, occasionally may be mistaken for signs of active lupus. Recognizing this possible complication of NSAID use is important, because the symptoms will go away when the drug is stopped. In general, you should always be cautious about taking too much of any NSAID, as excessive amounts can reduce the blood flow to your kidneys and may interfere with their ability to remove waste from your body.

Corticosteroids

Corticosteroids (also known as glucocorticoids, cortisone or steroids) are synthetic (man-made) drugs designed to work like the body’s naturally occurring hormones produced by the adrenal glands, in particular cortisol. Hormones are the body’s chemical messengers that regulate most of the body’s functions. Cortisol helps regulate blood pressure and the immune system, and it is the body’s most potent anti-inflammatory hormone. Corticosteroids prescribed for autoimmune diseases are different from the anabolic steroids that weightlifters and other athletes sometimes take to increase strength.

Steroid medications work quickly to decrease the swelling, warmth, tenderness, and pain that are associated with inflammation. They do this by lessening the immune system’s response. Prednisone is the most commonly prescribed steroid for lupus. Prednisolone and methyl-prednisolone (Medrol®) are similar to prednisone, and some physicians prefer to prescribe these if you have liver problems.

Most people take steroids in pill form, but topical creams or gels are often used for cutaneous (skin) lupus. Steroids in liquid form are sometimes injected into muscles or directly into joints, and in some cases into skin lesions. Pulse steroids are large liquid doses given intravenously (injected into a vein) over several hours; the beneficial effects can last for weeks so pulse steroids are sometimes prescribed to control a lupus flare, or for people who cannot tolerate steroids in pill form.

Your doctor will try to keep your steroid dosage at the lowest effective level. Once the symptoms of lupus have responded to treatment, the steroid dose is gradually reduced (tapered). As an alternative to tapering, or stepping down the steroid dose, your doctor may choose to have you take steroids on an every-other day basis — one day on, one day off.

Steroids can produce a variety of side effects. The most common are changes in appearance (acne, a round or moon-shaped face, weight gain due to increased appetite, and hair growth). Steroids can cause fluid retention and a redistribution of fat, leading to a swollen face and abdomen, but thin arms and legs. Also, the skin becomes more fragile and bruises easily. Steroids can suppress growth in children. Steroids can also cause irritability, agitation, excitability, insomnia, or depression. These changes in appearance and mood are more apparent with high doses of steroids.

Side Effects of Long Term Steroid Use

  • Increased risk of infections poses the most danger. If you are taking steroids you must take extra care to clean and protect any open wounds. Infections are one of the leading causes of death in people with lupus.
  • Avascular necrosis of bone, which occurs most often in the hip, is the destruction of the bone itself and is quite painful. Relief from pain often requires total surgical joint replacement.
  • Osteoporosis (bones become fragile and more likely to break) leads to bone fractures, especially compression fractures of the vertebrae with severe back pain.
  • Muscle weakness
  • Cataracts
  • Suppression of growth in children

Antimalarials

Antimalarials are used in combination with steroids and other medications, in part to reduce the dose required of the other drugs. Antimalarials are most often prescribed for skin rashes, mouth ulcers, and joint pain, but also can be effective in mild forms of lupus where inflammation and blood clotting are a concern. Antimalarials improve lupus by decreasing autoantibody production, protecting against the damaging effects of ultraviolet light from the sun and other sources, and improving skin lesions.

The two types of antimalarials most often prescribed today for lupus are hydroxychloroquine (Plaquenil®) and chloroquine (Aralen®). Unlike the rapid response seen with steroids, it may take months before antimalarial drugs improve your lupus symptoms.

Side effects from antimalarials are rare and usually mild; they include upset stomach and changes in skin color. These side effects usually go away after the body adjusts to the medication. In high doses certain antimalarial drugs may damage the retina of the eye, causing vision problems. With the low doses of antimalarials used in the treatment of lupus, the risk of this complication is extremely low. However, as a precaution, people treated with antimalarials should see an eye doctor (ophthalmologist) regularly.

Women who are pregnant should continue to take their antimalarial medication as prescribed, in order to avoid a lupus flare. Although this medication can cross the placenta, the possibility of eye and ear toxicity in the infant is very low. In fact, recent studies suggest that the risk of flare for the mother is greater than the risk of fetal toxicity.

Immunosuppressives (Immune Modulators)

Immunosuppressive medications are used to control inflammation and the overactive immune system, especially when steroids have been unable to bring lupus symptoms under control, or when a person cannot tolerate high doses of steroids. However, there can be serious side effects from these drugs, so if you are being treated with immunosuppressives you should be carefully monitored by your physician. Immunosuppressive drugs reduce your body’s ability to fight off infections, and increase the chances that you could develop viral infections such as shingles (chicken pox, or herpes zoster). It is extremely important that you pay attention to even the smallest cut or wound, and let your doctor know if any sign of infection begins, such as redness, swelling, tenderness, or pain. These drugs may also increase your risk for developing cancer.

Each immunosuppressive drug has unique side effects. Therefore it is important that immunosuppressive drugs be given only by physicians who are experienced with the use of these medications.

Cyclophosphamide (Cytoxan®) was developed to fight cancer. Although in its early years of use it was taken in pill form, today Cytoxan is taken through the vein (intravenously, or IV). It has been shown to improve kidney and lung disease, but can affect a woman’s menstrual cycle and can cause bladder problems, hair loss, and sterility.

Methotrexate (Rheumatrex™), also developed to fight cancer, is known as the “gold standard” — the best drug — for the treatment of rheumatoid arthritis. It has also been shown to be very effective in treating skin lesions, arthritis, and pleuritis in people with lupus. However, the drug can cause sun-sensitivity, liver damage, including cirrhosis, and lung infections. If you are taking this drug you should not drink alcohol, especially if you have a history of kidney disease. If you are taking high-dose methotrexate you should not use NSAIDs; caution is also advised when taking aspirin. Nausea, mouth sores, and headaches are the most common side effects of methotrexate.

Azathioprine (Imuran®) was developed to prevent rejection of kidney transplants. It blocks inflammation pathways in lupus and helps to lower the steroid dosage and improve liver and kidney disease. However, it may cause pancreatitis and an allergic form of hepatitis, so liver function tests and blood counts should be done regularly.

Anticoagulant

Because blood clots can be a life-threatening symptom of lupus, these drugs are used to thin your blood to prevent it from clotting too easily. Anticoagulant medications include low-dose aspirin, heparin (Calciparine®, Liquaemin®) and warfarin (Coumadin®). In particular, if you are being treated with warfarin you must be monitored by your doctor to be sure your blood does not become too thin. Anticoagulant therapy may be lifelong in some people with lupus. Very recent research has shown that people’s genetic makeup may influence how they respond to warfarin; specifically, that people with variations in two genes may need lower warfarin doses due to differences in how the body breaks down (metabolizes) warfarin and regulates the ability of warfarin to prevent blood from clotting. Therefore the dosage and administration of warfarin must be individualized for each person.

Frequently Asked Questions

 

I don’t want to go on prednisone. Are there any other treatments available?
In addition to corticosteroids, lupus can be treated with non-steroidal anti-inflammatory drugs, anti-malarial medications, and chemotherapy drugs. There can be situations where steroids are the best choice of therapy and the other medications are not indicated or are ineffective.

What side effects can I expect from taking steroids?
Prednisone is a double-edged sword. It is a very effective anti-inflammatory agent in lupus, and it works fast. But over time, the side effects of higher doses of the medication can be significant. People taking steroids may have side effects that include weight gain (especially in the cheeks and over the back of the neck), acne, hair thinning on the scalp, new facial hair (on the chin or above the lips), mood swings and difficulty concentrating. Your doctor may also discover that your prednisone has caused higher blood pressure, higher glucose levels and higher cholesterol. Prednisone can also weaken bones and damage the blood supply to joints, which usually occurs first in the hips.

Does long-term prednisone use cause diabetes?
Cortisone and its analogues are “stress hormones” that prime the body for times of challenge. Thus, the rise in sugar in the body is a natural byproduct of a preparation for stress in tissues of the muscles, brain, and heart for example. This is why an increase in the stress hormone results in an increase of the body’s stores of glucose. Long-term prednisone use can cause diabetes in someone who has a tendency to be diabetic. Moreover, the higher the dose of prednisone, the greater the likelihood that the blood glucose (sugar) level will rise. Obesity and a genetic background that includes diabetes also gives a person a greater chance of developing diabetes.

 

Woohoo!

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Well, today I felt a little better than I have in some time now. I am choosing to magnify the positive and eliminate the negative today. I was so fortunate to get quite a bit accomplished and feel better for it. I think the prednisone is kicking in, although still in lots of pain yet. I am hoping the doctor will help me out on that one somehow. At this point, I will go back on the chemotherapy if that is what it takes. I am sick and tired of being sick and tired!

Lupus is so not fair and so not fun! I know, we are not promised to have happiness and light all the time but you know, I wish I could have a few good days in a row! I am beginning to think I am going to have to deal with this wolf in a much more aggressive way for a time. My doctor knows how bad I hate and detest using prednisone, but when I am on it, it does help so I  will  take the moon face and weight gain if it gives me more time to spend with my family.

It is an ironic trade off. My joints hurt more with more weight, yet the medicine to help me makes me gain weight. The paradox is that prednisone is the least of all the “poisons”, or as we lupies call it, the meds, we have to take. High doses create problems like osteoporosis (which I have) and can cause you to have side effects as described below (from wikipedia)

Prednisone’s side effects are legendary in both the medical and patient communities. Patients usually ingest this non-synthetic corticosteroid drug orally. However, doctors administer prednisone in the form of intramuscular injection, too. Medical professionals prescribe prednisone for many medical conditions.

Prednisone turns into the steroidal product prednisolone after the liver has processed prednisone following administration. Its most common use is as an immunosuppressant that acts on almost the entire immune system. This makes it very useful in the treatment of autoimmune diseases, inflammatory diseases like severe asthma, severe poison ivy dermatitis, ulcerative colitis, rheumatoid arthritis and Crohn’s disease.

Doctors also use prednisone to treat the symptoms of many kidney diseases such as nephrotic syndrome, and to avoid and reverse tissue rejection following organ transplantation. The usual adult dose at the beginning of treatment ranges from 20 to 80 milligrams per day. The dose for children may be 1milligram per kilogram of body weight, with a maximum dose of 50 milligrams.

The side effects of prednisone include adrenal suppression, which can occur with periods of prednisone use to surpass seven days. Adrenal suppression refers to the body’s inability to synthesize natural corticosteroids, resulting in a dependency on the prednisone taken by the patient. This is why doctors do not recommend the cessation of prednisone when the patient has taken it for longer than seven days. They reduce the dose gradually over a few days in the case of short-term prednisone use, and over weeks or months in the case of long-term treatment. Stopping prednisone treatment abruptly can cause the life-threatening Addison’s disease, in which in the body no longer produces sufficient amounts of adrenal steroid hormones

The short-term side effects of prednisone use include high blood glucose levels. This happens most commonly in patients that are already has diabetes mellitus or is using medications that increase blood glucose. Other short-term side effects of prednisone include insomnia, euphoria and, in some cases, even mania. Using prednisone for long periods can cause side effects such as Cushing’s syndrome, weight gain, osteoporosis, glaucoma and type II diabetes mellitus. Upon withdrawal of prednisone after long-term use, patients also suffer from depression. Almost all long-term users of prednisone experience a reduction in their sex drive, as well.

Prednisone use can affect the eyes as well. The most common side effects in the context are glaucoma and cataract formation. These usually occur with topical or intraocular administration of prednisone, but they can also appear with oral, intravenous, or even inhaled administration.

Prednisone use of any period can give rise to many other side effects such as unnatural fatigue or weakness, abdominal pain, blurring of vision, peptic ulcers, infections, pain in the hips or shoulders, osteoporosis, occurrence of acne and sleeplessness. Some of the less serious side effects of prednisone include weight gain, stretch marks on the skin, swelling in the face, nervousness, increase in appetite and hyperactivity.

Doctors treat these side effects of prednisone symptomatically, since it is not always feasible to stop prednisone administration even when severe side effects occur. These are situation where they have to weigh the disadvantages of using a drug against the advantages and make an informed decision. One must remember that while prednisone definitely does give rise to many side effects, it is also a life-saving drug.

It is not to be taken lightly, this drug and yet, it is only the front line defense for lupus. Systemic lupus erythrematosis, or SLE, is not a pretty disease. While some are lucky enough to not develop a lot of issues with lupus, some have lots of issues. For each person it is different. That is why, when you meet someone with lupus, you never know the battles they are having.

So, in conclusion, I hope if you read this, you are a little more educated on one of the drugs used to treat lupus. I am hoping to educate anyone who reads this blog. It is my ultimate goal. In the meantime though, I will write about life experiences and share them here so others may learn the value of life and living, and treat others with dignity and empathy.