Tag Archive | Conditions and Diseases

Basic Lupus Treatment and Steroids

Many of us would be surprised at the amount we already know about lupus that the average consumer does not. For example, often we know what our ANAs and ESRs are. We know to compare them with previous ones and we might understand why they might be elevated. For example, often we follow our ESR (erythrocyte sedimentation rate) as a measure of inflammation in our bodies. Well, if it is elevated, it means that there is inflammation SOME WHERE IN THE BODY. More specifically, we might compare our ANAs.

We’ve learned over the years, that treatment for the symptoms of lupus involves treating the inflammation that causes those symptoms. That’s the reason doctors often suggest NSAIDs (non-steroidal anti-inflammatory drugs) like “Aleve” or ibuprofen.

Oftentimes, NSAIDs are adequate to control pain as they decrease inflammation which causes the pain. But, sometimes NSAIDs are not adequate. So, pain is managed temporarily with the steroid, prednisone. Sometimes, a dosepak is prescribed, a burst of an oral steroid followed by decreasing doses of that same steroid for 5 or 6 days.

Steroids should always be withdrawn slowly; we all know that. But do you know why? We might experience symptoms of the withdrawal (weakness, fatigue, body aches, joint pain).

The main reason for weaning from steroids slowly is because the adrenal glands already produce a steroid, cortisol. When you started taking oral exogenous (from an outside source) steroids, the body began to slow down it’s production of them over 2-3 weeks. As time passed, your body became completely dependent on oral steroids as endogenous  (produced from within the body) stops.

When the exogenous steroids are to be stopped and steroid therapy reintroduced, it is important to slowly taper the amount of steroids that you take because it ‘time’ for the adrenals to ‘kick back in’ with their production of cortisol, so exogenous steroids have to be slowly withdrawn. Why? Because cortisol is the steroid responsible for the ‘fight or flight’ response that our body mounts to stress, so something called adrenal insufficiency or adrenal crisis can result. We must be able to engage the fight or flight response, so it is important, very important that steroid tapers be followed exactly as your doctor orders.

http://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923 retrieved from the www: 9/19/2016

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Chronic care involves more than clinical expertise

Who knows you better than anyone else? Not your parents, your husband, wife, children or best friend; but YOU!

But, their many years love for you becomes immaterial when you’re first diagnosed with lupus or another chronic illness or autoimmune disease. Friends and family likely remember their reaction to your diagnosis and their feelings of powerless to protect you from the ravages of lupus or other autoimmune disease.

On the other hand, your doctor remained quite objective, even aloof, through the maze of tests ?

When you were first diagnosed with lupus or another autoimmune disease, you needed some hand-holding, right? At a bare minimum, you wanted the feeling that your doctor is in this for the long haul; you don’t feel those warm fuzzies, those vibes. You only feel ‘cold pricklies.’Why?

Someone needs to be the objective person in the room; and often your doctor is it. Much to your dismay, it’s not his ‘job’ to make you feel ‘good’ about having a chronic illness. His job is to guide you and your family through the maze of tests and explain why, for example, the lab needs 10 tubes of blood for one test! Or, why they need to do a test  that was done just did last month!

You doctor can be the incredibly excellent teacher, he and his team clinically astute, but he doesn’t work alone. He can’t. Instead he relies on your accurate reporting of your symptoms.

He needs more than a statement, “I didn’t get much sleep last weekend.”  He needs a partner, he needs a patient who will give him information like, ” I’ve not slept much more than 4 hours every night for the past 2 weeks and my boss has been on ‘my tail.’ Could that explain my flare?

Unless the doctor knows those little details (which may seem unimportant to you)-how you slept, that you didn’t sleep much, that you were in an unpleasant relationship which didn’t end well, he/she can’t put facts together and create a clinical picture.

A picture like, “Well, sleep causes an inflammatory response in the cardiovascular system. Could that explain the rise in her blood pressure? It also decreases the body’s immune response. Could this explain the frequent colds and flu that I’ve noticed?”

If you don’t let your doctor know things, even things that you don’t think are important, you’re doing yourself a disservice. Keep a journal of the time you rise, the foods you eat and the symptoms you experience and let your physician know more than you think he needs to know. He/she has a way of listening to your story and still getting the facts that he needs to know.

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An interview-WITH ME!

By Maria Mongiardo
Annie is sixty-two and lives with her husband, Rey, in Colorado. Over the years, she was diagnosed with epilepsy, secondary Sjogren’s syndrome, fibromyalgia, lupus, and now complication of these. She has her own lupus blog called The Lupua Guru – Her blog is for people looking for information and advice on lupus and caregiving. She has been living an extraordinary life and shares her inspiring story with us.
How was your diagnosis made?
First, I was first diagnosed with epilepsy at age twelve, but like any kid, I did not think I was ‘different.’ In ways I didn’t know then, that was the first time my life changed. My Father and Mother saw to it that all of my growing needs were met; also, I grew up in a small town with understanding and extraordinary classmates.
Then, one eve in my junior year my life changed forever-again: I was leaning over the tub to wash my hair, had a seizure and hit my head on the unforgiving porcelain as I lost control and suffered major third degree burns. Rumor has it, that my Father, every bit the attorney, grilled the plastic surgeon about his abilities to save my life. At that time, people usually did not survive burns that I had. It was not long after that that my parents arranged tutoring for me, since I had to miss so much school because of reconstructive surgery. Despite my burn scars, I went to the junior prom with the ‘big man on campus,’ class president, and football star of any gal’s dream.
Then, my life changed again when my Father died quite early in life and quite unexpectedly. (how many times can a life change?). I was too young to absorb the meaning of the loss of my father, though I eventually felt the impact and it became one of the greatest losses of my life. I had grown accustomed to more attention from Mom and all of a sudden that attention was rightly divided as she had the responsibility of raising and putting all of us through college.
Then my life changed again.I was diagnosed with Sjogren’s Syndrome while in college, when I had mumps a bit too regularly; an astute clinic physician diagnosed parotitis, a hallmark of Sjogren’s syndrome and referred me to ENT which confirmed After a lip biopsy and other tests a diagnosis of Sjogren’s was made when I was about twenty.
Mom took charge again and saw to it that the medications for epilepsy were changed because my seizures were not controlled. She wanted me to have the life that she and her husband had envisioned for me. Seizures stopped as soon as med changes were made and, boom! I went to nursing school, moved to Chicago and began to LIVE!
My life changed yet again when I was diagnosed with lupus in 2002. With this diagnosis, my rheumatologist explained that it was a mixed connective tissue disease, which knows no bounds as far as the complications I could experience, I was granted a full disability in 2003. We then moved to Virginia for a better job opportunity for my husband and refinished an old house. No sooner did the final coat of paint dry, than Rey called me and told me that he had lost his job. But another job opportunity awaited us in Colorado.
What is your support system like?
For many years I have had tremendous support from my husband who at times has had difficulty understanding what I have had to go through. But for the most part he has always been there as have several very close friends and family. But, it’s hard, because everyone has his/her own life. Part of my issues have been how I emotionally have had to deal with what others have thought of me. As I have gotten older those feelings have not subsided. So my support comes in spades from my tremendous husband and all the wonderful friends I have made along this journey called life.
What do you do for work now?
I co-moderate an online support group for osteonecrosis (avascular necrosis). I edit and review books, was a freelance writer for eight years for national nursing magazines and I have my blog at http://lupusguru.com where I use my background in nursing to discuss topics related to lupus and put them in words that are decipherable to the many who have lupus or the caregivers for someone with an autoimmune disease.
Anyone with chronic illnesses knows that keeping ‘ologists appointments, having regular diagnostic testing, filling medications and all the pressures of this, the physical therapy that may go along with this-can take up too much time or sometimes be a full-time job, making you feel like a perennial patient; not a good feeling!
Do you take any supplements?
I tried acupuncture, Chiropractic was minimally effective, special diets and counseling to get over the many losses I would experience in my life. Counseling was most effective until I found out that the counselor did not HAVE A LICENSE TO PRACTICE! I just tried started to try some essential oils, researched carefully by a nurse friend who knows of my medical condition. Massage only felt good for a short amount of time, but had no long lasting effects, so I am back to only medications.
How do you stay so positive?
I have some wonderful friends; and what is to be gained by being negative, anyway? One of my friends said to me once; “it’s okay to get on your ‘pity pot,’ once in a while;” but “you need to give it a statue of limitations.”
Has lupus affected your marriage?
Other than the recent financial problems, it has strengthened our bond. I was a real active, type A personality and Rey was a type B personality. Before we married, it was agreed that I would slow down a bit and he would pick his tempo up a notch. ! My having lupus has forced him to become closer to the type A mode, because he does all the shopping, all the cooking, most of the cleaning, yard and heavy work around the house: I’ve given him the honorary type A title! Those things (shopping cooking, cleaning, etc.) are things that I would normally do, that I used to be able to do, and would love to be able to do; and now, because I can only do them on a very good day. I feel less a woman, less of a wife. Men, please realize and understand that your wives may feel this, too.
Any advice for people who are married?
The advice I have is for couples who are considering marriage; think about those vows BEFORE you marry, and think how you would react if the ***t were to hit the fan. Really think about the “for better, for worse, in sickness and in health, forsaking all others, till death do us part” part. What if your caregiver got sick? What if you found yourself in the same boat as Rey and me? Claws can come out. During your marriage, something will, maybe not lupus, but something else, possibly more tragic or probably less tragic can happen. If you are not 100% sure that you’ll stick around, do not take the vows. It is not right, nor is it fair, nor is the LOVE real. Remember, it could be you who gets sick and needs help.
Do you have any advice for people with an autoimmune disease?
My advice for people who have an autoimmune disease is to hook up early with a good rheumatologist as soon as you can and learn as much as you can about autoimmunity. This does not need to be all-consuming, but can I suggest a few good reads? “The Lupus Book” A Guide for Patients and Their Families, “ “The Lupus Encyclopedia” by Donald E. Thomas MD and “In Your Own Hands” by Larry Berkelhammer, PhD. The last book is great reading for those who realize the power of the connection between the mind and the body, but ALL of the books are excellent and well sourced. On my these pages, soon, I’ll be writing a review of the 2 latter books.
Is there anything else you do to stay healthy?
I have become the worst at this. I always used to eat and sleep well when I was younger; well, sometimes I missed out on sleep when I partied too hard, but by and large, I was in good shape as a triathlete (Was I good? That doesn’t matter!).
I hooked up with a physician years ago who felt a strongly about the connection between the mind and the body, and it was in teaching one of his classes that I met my husband. But what do I do to stay healthy now? Not as much as I should; the caregiver in me makes sure the needs of others are met BEFORE I meet mine. I have learned how to tell my husband what makes up a well-rounded meal! I participate in “Silver Sneakers” classes, offered by many insurance companies. I know, that’s not enough, but I am also receiving physical therapy for an ankle replacement that I had last October 2013 that sort of precludes strenuous exercise.
Is there anything you specifically would like people on lupuschick.com to know about your fundraiser?
I would like people to know that we planned for our financial future BECAUSE we knew I did not have a great health history and because of my being a nurse, we had an idea of certain worst-case scenarios that could play-out. We knew complications could arise for which we’d need extra money. We planned for long-term care and thought we had most bases covered. But, as John Lennon said,‘ Life is what happens when you’re busy making other plans.’ We planed on unemployment for as long a year, but not three and a half years and we didn’t foresee bankruptcy!
The fundraiser we set up is on GiveForward, an organization based in Chicago. Their mission: to promote medical fundraising. We need to raise money for bills that relate to lupus, medications I take for lupus, Sjogrens and epilepsy and problems they can pose-or medications for them can pose. Our specific site is:
https://www.giveforward.com/fundraiser/xfl4/annie-s-autoimmunty-and-rey-s-move-fund
It is HARD is to appeal to you and to others who don’t know us for help. But, I know if the shoe were on the other foot I’d try my darndest to help others. There is something lupies do: we stick together! Can you help Rey and me start over by donating to our fundraiser? Can you forgo a dinner out, a night at the movies or a movie rental, a few lattes, and donate to our fund? We would be forever in your debt. We need money to pay for a move to where we think there will be more jobs and all relocation expenses, first months rent and security deposit. We know competition for jobs can be stiff; but at least there will be jobs. At our site, there is an online donation form, though, if you are uncomfortable with giving information online, contact me at anowlin7@gmail.com and I will give you my snail mail address. I NEVER thought I would be starting over at 62!
We’ve received donations from people we don’t know. That in itself is so heart-warming. that I don’t know how to express the feeling; but how do you write a ‘thank you’ note to someone you don’t know?
What would you like to see on a website such as lupuschick.com?
In addition to the tremoundously well-orgnized autoimmune/lupus and resource information, I would like to see a financial planning section and a WHY it is so important that people with lupus or another autoimmune disease plan for their financial future, no matter how big or small their income. I should think that CFPs would be only too happy to contribute and they might offer free consults. One last thing for all you lupuschick readers: plan, plan, plan, and revise that plan.
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What causes lupus?

Many scientists, but not all, believe that lupus is the result of a combination of factors within the body (internal triggers -meeting factors outside the body (external triggers). One of those internal factors/agents might be a hormone. An example might be an individual with elevated hormone levels (internal agent) who encounters any number of environmental triggers.

These same scientists have not identified a specific environmental trigger, but their theory seems plausible and from where I sit, possible. Assuming hormones are one of those internal agents, they can make an individual more susceptible to developing lupus, particularly the hormone, estrogen. Both men and women have hormones, but they are present with more regularity in women.

If this hormonal theory is correct, is it any wonder, then, that more women than men (90%) develop lupus? It has also been seen that before and during their menstrual cycles (when estrogen production is higher). This also occurs in pregnancy. But, this cause/effect theory is hard to prove, because there are many women with lupus who take birth control pills (heavy with estrogen), or other forms of estrogens and they don’t see an increase in their lupus symptoms-or many don’t have lupus, at all.

There is no specific gene that one can test for that is a predictor of lupus; but lupus can run in families. A genetic link with environmental factors has some thinking; when fraternal twins are raised in the same environment, only one may develop lupus. But if the twins are identical, there is a much greater chance (about 25%) of lupus developing.

So what of environmental triggers? As discussed earlier, it is hypothesized that susceptible individuals need to be confronted with environmental triggers before lupus develops. What might some of these environmental triggers be? They can be ultraviolet rays from sun and even fluorescent light bulbs. medications which cause sun sensitivity (like tetracycline), sulfa drugs (Bactrim and others), penicillin or some other penicillin-based antibiotics, stresses on the body (physical and emotional) or pregnancy.

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How Can I Learn to Accept My Lupus?

Once a patient learns he has lupus, possibly the next question that arises is how to make a living with lupus. A diagnosis of lupus stays with you for the rest of your life. That is the reason that figuring out how to live with lupus includes making a few changes-physical, emotional, otherworldly and possibly spiritual-inside your family, at work and inside your social circles. As a rule, these changes will change how you see yourself.

It is vital to understand the critical distinction between seeing yourself as a person who happens to have a chronic disease and seeing yourself as a person who is defined by being a chronically ill individual whose ‘lot in life’ is to be sick. I’m here to help you learn to see yourself as that individual who happens to have a chronic illness.

What do I need to do to continue working with lupus?

Whether you were newly diagnosed with lupus or are a long time lupus patient there are some vital points to remember that are critical for your overall well being. Besides, establishing a good relationship with your doctor and having a support from your family and understanding the basics of the disease very well. These are some important tips to towards a happier life with lupus.

  • Maintain a Positive Attitude

Having a positive outlook and forward thinking are perhaps the two biggest steps towards living as happily as possible with lupus.. Your attitude plays a key role in your symptoms because stress, anxiety and negative thoughts impact your overall state of wellness. Choosing a positive attitude and making a commitment to enhance the quality of your life will ultimately lead you to cope up with the daily and ongoing challenges of living with lupus.

Sometimes maintaining that positive attitude is hard, very hard and seems to be impossible, but this is why it is important that you build into your life a support system; this system may include your church, friends and loved ones who understand what lupus is, if only marginally, and how lupus affects what you do and prevents your from doing the things that you used to love to do. They should also understand how not being able to do those things affects you. Equally as important is to understand that as of now, there is no known cure for lupus and that learning to live and cope with lupus and its challenges needs to be part of your lifestyle.

  • Maintain a Healthy Relationship With Your Doctor

Since Lupus is an ongoing, chronic disease you will be spending a great amount of time with your doctor over the years. Learn to make it quality time. It’s also very important to develop an honest relationship with your doctor and develop an ability to discuss each and every issue related to lupus. It is also very important to visit your doctor regularly and follow the medication regimen he or she prescribes; as well has have all the blood and lab tests he deems necessary, on regular basis.

  • Develop Strong Relationship With Employers, Coworkers and Family Members

A strong and reliable support network is important when dealing with lupus. Teaching family, loved ones, employers, coworkers and those closest to you what lupus is, will make them to understand the disease well and what you are going through. This will help them to extend their support and love towards you. They will then understand that you have ‘good’ days and ‘bad’ days and that you can be counted on to ‘give more than your all’ on ‘good’ days.

A strong and reliable support network is important when dealing with lupus. Ssupport group and online networking with other lupus patients will help you to reach out and share the information and inspire each other. Teaching family, loved ones, employers, coworkers and those closest to you what lupus is, will make them to understand the disease well and what you are going through. This will help them to extend their support and love towards you. They will then understand that you have ‘good’ days and ‘bad’ days and you will give more than your all on ‘good’ days. And also, support group and online networking with other lupus patients will help you to reach out and share the information and inspire each other.

  • Take An Active Role to Remain Healthy

Lupus patients need to take an active role to remain healthy throughout their life. One of the best approaches is to keep a diary of how your body feels. Paying close attention to your body, symptoms you may experience and documenting those symptoms is an important way to determine which medications work better for you and what trigger your symptoms.

  •  Include Exercise In Your Daily Routine

Exercising/working out is an essential part to make a happy living with Lupus. Talk to your doctor to the safest exercise options and include them in your daily routine, but some form of exercise is a must. See about including walking, yoga or Pilates are any kind of exercise, which improves your muscle strength and decreases stress.

  • Follow Precautions While You Are In The Sun

It’s best to develop the habit of applying sunscreen while you outside and reapply it for every 2-3 hours while you are in the sun. And also wear a wide brimmed hat to protect your face and neck. It has even been suggested that sunscreen should be worn indoors, too.

Obviously no one wants to have a chronic disease with no current cure. But today people who have lupus are living longer and can set attainable goals. But, ge kind to yourself and know that you are not alone and don’t set unattainable goals. Work closely with your doctors for a wellness plan and reach out to those who love you and stay motived and positive. And if in the case of any emergency please make sure to have an EHIC card with you for a medical treatment if you don’t live in the US.

~Ruby Andrew lives in Bristol, UK and is an avid reader and blogger. Since her early years she’s had a passion for writing. Her areas of interest are food, reviews (Book/Movie), Travel, Fashion, Lifestyle,Fitness and Wellness. She works as a guest blogger on her chosen areas of interest and currently writes on behalf of EHIC Card.




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Talk about a huge slice of humble pie!

It happens. Unfortunately, Rey (my husband) and I have run into a string of bad luck starting with my lupus which resulted in osteonecrosis and Shrinking Lung Syndrome. This economy hasn’t helped as he has been unemployed for the past 3 three 1/2 years. This has given us no choice but to leave these precious Rocky Mountains, which have been such a wonderful backyard and place for many day trips, in search of work elsewhere (of any kind!) and a NEW START! If you can spare the cost of a latte each week or a guilty pleasure or a hug, (we love hugs!) we’d be forever grateful. You’ll be taken to a descriptor page for our internet fundraiser, to donate, simply fill in the box and click “GIVE.”  Thank you and God Bless, Annie

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Causes of lupus

If we knew what caused lupus, finding a cure wouldn’t be far behind, right?  Not so fast! Lupus is not an infection, viral or bacterial, so it cannot be CAUGHT. No particular gene has been identified in lupus patients that people free of the disease don’t have. So,that seems to rule out a complete genetic link, but if there is a gene, it needs a trigger.

Lupus does have a tendency to ‘run in families,’ so that helps make a stronger case FOR a genetic tie, or at least a familial one. Also, certain ethnic groups are more prone to develop lupus: Native-American, African, Asian, native Hawaiian.

Environment can play a role by providing the trigger that genetic and familial predisposition require. Some of those triggers are sun exposure, medication, (medications that sensitizes one to the sun), anything that is a stress on the system, like emotional (like divorce, death in the family) or physical (illness, trauma) stress.

While hormones, mainly estrogen, don’t cause  lupus, they can be associated with it. During a woman’s pregnancy, there is a higher level of estrogen and often,  pregnant women have a worsening of lupus symptoms.

There have been occasions that people have said that their lupus symptoms are worse during times of stress, but this requires more study; aha, it’s only natural that toxic chemicals trigger lupus, right? The NIH is conducting studies on this, but as of now, the answer is again, inconclusive.

Is the cause, something that we eat? There are rumors-and they are unsubstantiated rumors that lupus is caused by aspartame or other artificial sweeteners. Again, this isn’t backed up by any scientific studies.

Common signs and symptoms of systemic lupus er...

Common signs and symptoms of systemic lupus erythematosus. (See Wikipedia:Systemic lupus erythematosus#Signs and symptoms). Model: Mikael Häggström. To discuss image, please see Template talk:Human body diagrams References MedicineNet > Systemic Lupus (cont.) Last Editorial Review: 1/30/2009 (Photo credit: Wikipedia)

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