Recently found article about e-patients… good read


I actually found this on facebook from another fellow lupie. This is interesting because it discusses whether we as patients should become better consumers of our own health. Enjoy and share your opinions…

Healthcare & Social Media: Are e-Patients Crossing the Line?


What line? Where is the line? In former times the line was malpractice. Honestly, that was the only solution to an inadequate or inept doctor. If a patient had a doctor that did not listen and the patient got even sicker or died as a result, he or his family could sue. It was simple. Everyone knew his role.

Patients asked doctors for answers. Patients paid the doctor for answers. Patients had questions and doctors had answers. If patients were harmed in the process, a lawsuit could be filed.


Today, it’s complicated. Patients who don’t get answers from their doctors can persevere in other ways. They don’t have to accept a suspect or inadequate answer. They can research information online. They can network with other patients. They can conduct online polls on their blogs. And they can search for doctors who are better equipped to manage their cases.

So, where are the lines today? Are patients who read medical journals out of line? Are patients who share their own experiences with others out of line? When do e-patients cross some kind of line of what is acceptable? How do they know when they violate the unwritten law, transgressing into a sacred realm of medical knowledge?

Two ways to look at e-patients

There are two ways to look at the modern scenario. There is the “Us versus Them” mentality where doctors and e-patients square off against one another. They draw lines between “our side” and “their side.” Alternately, there is the partnership model where healthcare becomes a collaboration between patients and doctors. Both have knowledge, one as an expert in his field (the doctor) and one as an expert in himself (the e-patient).

Most patients have their own examples of struggles to get answers from when doctors do not adequately address the concerns of patients. I will use two that affected me personally. I choose them because they demonstrate the dead end of drawing “lines” that sound too much to me like “Don’t drink from this fountain” or “Sit in the back of this bus.”

Two examples of un-empowered patients

My first example came when my husband was entering seminary. Money was tight and healthcare was pay as you go. On a retreat weekend, I experienced a sudden onset of excruciating joint pain I had not experienced before. At first, the pain was in my neck accompanied by redness. I suspected a spider bite since we were in the woods. Large doses of ibuprophen only helped a little. When the pain spread to other joints, the VIP’s at the event became concerned and insisted I seek medical attention.

My visit with the urgent care doctor was short. I described my symptoms and showed him the lacy red rash that covered my legs. He told my husband there was nothing wrong with me. My husband paid him one hundred dollars. I felt powerless to argue.

There was a happy ending: I arrived home to see that my little girl had a red face that looked like sunburn. If you hadn’t guessed it by now, I’m sure that gave it away. I had Fifth disease caused by Parvo virus. Our pediatrician recognized it immediately. The virus resolved without treatment. But I would have been more comfortable with prednisone.

Maybe it didn’t matter that I was embarrassed or spent money I didn’t have to be insulted by an incompetent doctor who did nothing to make me more comfortable. However, a similar scenario ended tragically. My grandmother was in a car accident when I was young. When the emergency room doctors released her as healthy, she continued to experience pain. When she returned repeatedly, she was assured that she was only upset. My grandmother was bleeding internally. She didn’t recover. My family sued.

I believe that her story could have ended differently today. I believe that the bright woman could have been an e-patient if she had the opportunity. It was not a door she could have opened herself, but she could have walked through it the same as hundreds of women I see on my blog or Facebook every day. None of the doctors viewed my grandmother as a partner in her treatment. Her assertions went unheeded. Doctors and patients who are leading the way today toward patient empowerment are working to change sad endings like that.

So, are e-patients crossing the line?

I don’t believe e-patients want to usurp the role of doctors. They just want to get well – or see their loved one live on. Certainly patients should trust doctors’ judgment, but some doctors got C’s in medical school or are too busy to read the latest study or just have poor listening skills. Collaborating with patients could make them better doctors.

Are e-patients crossing the line? If so there will there be new lines. I think the roles are changing. I wear the e-Patient label proudly – for the time being at least. I don’t care what we are called – as long as we can be partners.

Kelly Young is the author of the Rheumatoid Arthritis Warrior website. Kelly’s e-patient story is on Her Twitter is @rawarrior.

Note: The link it the Tweet referred to a blog written by Martin Young, MD. I do not believe that Dr. Young meant to imply that patients are crossing lines inappropriately by being e-patients. I take him at his word when he states that he supports e-patients as a concept and as individuals. He has personally been supportive of me and my work as a patient advocate. I have had discussion with him and I do believe that he is honestly concerned for our welfare as patients.




This is the medication I have been on at various times in my disease process. I have asked not to take it anymore because of the wide range of side effects I manifest while on this medication. Each person is different in what may or may not mainfest in them during treatment. I have heard from a great many patients that while taking this, if they also take folic acid, it keeps the side effects to a minimum.

There are many lupus patients who have had great results with this medication as well. It is best if you and your doctor determine the course for your particular pathway of lupus. Always discuss these things with your doctor and do not self medicate.

This is a powerful medication for most people, yet one of the most used as well. While it is so effective in treating many different things in the autoimmune spectrum, it is still to be considered powerful. Please read the following information if you would like the basic information on this medication.

I got this information from Wikipedia. Their information follows:


In cancer chemotherapy

Methotrexate was originally used as part of combination chemotherapy regimens to treat many kinds of cancers. It is still the mainstay for the treatment of many neoplastic disorders including acute lymphoblastic leukemia.

Medical termination of pregnancy

Methotrexate is commonly used (generally in combination with misoprostol) to terminate pregnancies during the early stages (i.e. as an abortifacient). It is also used to treat ectopic pregnancies.[7] In the case of early missed miscarriage (particularly a blighted ovum), in which fetal demise has occurred but the body has not expelled the fetus, methotrexate may be used to help the body begin the miscarriage process.

Other uses

It has come into use as a treatment for some autoimmune diseases, including myasthenia gravis, polymyositis, dermatomyositis, inclusion body myositis, ankylosing spondylitis, Crohn’s disease, psoriasis, pustular psoriasis, psoriatic arthritis, rheumatoid arthritis, Wegener’s granulomatosis, Adult-onset Still’s disease, and scleroderma (see disease-modifying antirheumatic drugs). A parallel use with TNFα blockers, such as adalimumab, infliximab, or etanercept, has been shown to markedly improve symptoms.[8]

It is also sometimes used to treat a rare condition called Behçet’s disease where it is taken weekly, along with folic acid daily. In the case of immune disorders, such as Behçet’s disease and rheumatoid disorders, it is believed that the clinical goal of the low dose methotrexate regimen is to inhibit AICAR transformylase, which leads to increased AICA ribose (AICAR transformylase’s substrate). The AICA ribose inhibits adenosine deaminase, resulting in a build-up of extracellular adenosine. Extracellular adenosine inhibits the expression of IL-2 receptors on circulating T-lymphocytes, causing a suppression of the immune system, and thus ameliorating the effects of the immune disorder.

Drug Interactions

There is a risk of a severe adverse reactions if penicillins or related antibiotics are used alongside methotrexate. There have been numerous case reports of possible decreased urinary excretion of methotrexate due to competition by some acidic drugs like beta-lactams (penicillins, cephalosporins, carbapenems, and monobactams) for secretion in the renal tubule, with toxicity resulting due to increased blood methotrexate concentration.


It can be taken orally or administered by injection (subcutaneous, intramuscular, intravenous or intrathecal). Although daily preparations are occasionally used, most patients take weekly doses, which decreases the risk of certain side-effects. People taking this medicine must get appropriate tests done regularly, especially older people, to make sure no potentially fatal damage is being done to blood cells and immune system.

Adverse effects Possible side effects can include anemia, neutropenia, increased risk of bruising, hair loss, nausea and vomiting, dermatitis and diarrhea. A small percentage of patients develop hepatitis, and there is an increased risk of pulmonary fibrosis where dry cough can be an important sign.

The higher doses of methotrexate often used in cancer chemotherapy can cause toxic effects to the rapidly-dividing cells of bone marrow and gastrointestinal mucosa. The resulting myelosuppression and mucositis are often prevented (termed Leucovorin “rescue”- as this is the folic acid based drug used).

Methotrexate is a highly teratogenic drug and categorized in Pregnancy Category X by the FDA. Women must not take the drug during pregnancy, if there is a risk of becoming pregnant, or if they are breastfeeding. Men who are trying to get their partner pregnant must also not take the drug. To engage in any of these activities (after discontinuing the drug), women must wait until the end of a full ovulation cycle and men must wait three months.

Reports of central nervous system reactions to methotrexate especially when given via the intrathecal route which include myelopathies and leucoencephalopathies. It has a variety of cutaneous side effects, in particular when administered in high doses.

Generally, the more “non-specific” action a pharmacological substance has, the more possible side effects can be expected. Methotrexate has like all “cell toxic” substances a broad array of possible adverse effects. Care should always be taken to read the manufacturer’s original instructions for the preparation in question.

Here is a more thorough list of potential side effects for Methotrexate:

Most frequent Ulcerative stomatitis, leukopenia, nausea, abdominal distress.

Other frequent Hair loss, malaise, undue fatigue, chills and fever, dizziness and lowered resistance to infection.

Other rarer reactions (related to or attributed to Methotrexate) nodulosis, vasculitis, arthralgia/myalgia, loss of libido/impotence, diabetes, osteoporosis, osteonecrosis, sudden death, reversible lymphomas, tumor lysis syndrome, soft tissue necrosis, anaphylactoid reactions.

By organ system:

Alimentary system Anorexia, nausea, vomiting, diarrhea; Gingivitis, pharyngitis, stomatitis, hematemesis, melena, gastrointestinal ulceration/bleeding, enteritis, pancreatitis.

Blood/lymphatic system Anemia, aplastic anemia, pancytopenia, leukopenia, neutropenia, thrombocytopenia, lymphadenopathy and lymphoproliferative disorders. Hypogammaglobulinemia.

Cardiovascular system Pericarditis, pericardial effusion, hypotension, thromboembolic events (cerebral thrombosis, deep vein thrombosis, retinal vein thrombosis, thrombophlebitis, and pulmonary embolus).

Central nervous system Headaches, drowsiness, blurred vision, transient blindness, speech impairment including dysarthria and aphasia, hemiparesis, paresis and convulsions. Occasional reports of transient subtle cognitive dysfunction, mood alteration (depression), unusual cranial sensations, leukoencephalopathy, encephalopathy.

Hepatobiliary system Hepatotoxicity, acute hepatitis, chronic fibrosis/cirrhosis, decrease in serum albumin, liver enzyme elevations.

Immune system (infections) Fatal opportunistic infections (Pneumocystis carinii pneumonia, pneumonia, sepsis, nocardiosis, histoplasmosis, cryptococcosis, Herpes zoster, Herpes simplex hepatitis and disseminated Herpes simplex).

Musculoskeletal system Stress fracture.

Ophthalmic Conjunctivitis, serious visual changes (without known cause).

Respiratory system Respiratory fibrosis, respiratory failure, interstitial pneumonitis, and chronic interstitial obstructive pulmonary disease. Dry cough possibly being a symptom of these aforementioned conditions..

Dermatologic Acne, rashes (Erythematous rashes), pruritus, urticaria, photosensitivity, pigmentary changes, alopecia, ecchymosis, telangiectasia, furunculosis, erythema multiforme, toxic epidermal necrolysis, papular eruption, Stevens-Johnson Syndrome, skin necrosis, skin ulceration and exfoliative dermatitis.

Urogenital system Severe nephropathy or renal failure, azotemia, cystitis, hematuria; defective oogenesis or spermatogenesis, transient oligospermia, menstrual dysfunction, vaginal discharge, and gynecomastia; infertility, abortion, crystalluria,fetal defects



This is another of the medications I am taking. It is used to treat malaria and autoimmune diseases. It does have some serious side effects though. It also can take time to kick in and help. From the website, webmd here is the informaiton on Plaquenil:


Hydroxychloroquine is used to prevent or treat malaria infections caused by mosquito bites. It does not work against certain types of malaria (chloroquine-resistant). The United States Center for Disease Control provides updated guidelines and travel recommendations for the prevention and treatment of malaria in different parts of the world. Discuss the most recent information with your doctor before traveling to areas where malaria occurs.

This medication is also used, usually with other medications, to treat certain auto-immune diseases (lupus, rheumatoid arthritis) when other medications have not worked or cannot be used. It belongs to a class of medications known as disease-modifying antirheumatic drugs (DMARDs). It can reduce skin problems in lupus and prevent swelling/pain in arthritis, though it is not known exactly how the drug works.

OTHER USES: This section contains uses of this drug that are not listed in the approved professional labeling for the drug, but may be prescribed by your health care professional. Use this drug for a condition that is listed in this section only if it has been so prescribed by your health care professional.

This medication may also be used for other types of infections (e.g., Q fever endocarditis).

How to use Plaquenil Oral

Hydroxychloroquine is usually taken with food or milk to prevent stomach upset. The dosage and length of treatment are based on your medical condition and response to therapy. In children, dosage is also based on weight. For malaria prevention, take this medication by mouth once a week on the same day of the week, or as directed by your doctor. Mark a calendar to help you remember. This drug is usually started 2 weeks before entering the area with malaria. Take it once weekly while in the area, and continue taking it for 4 to 8 weeks after leaving the area or as directed by your doctor. To treat malaria, follow your doctor’s instructions.

For lupus or rheumatoid arthritis, take this medication by mouth, usually once or twice daily or as directed. Your doctor may gradually increase your dose. Once you have been taking the medication for a while and your condition has improved, your doctor may instruct you to lower your dose until you find the dose that works best with the fewest side effects.

Use this medication regularly in order to get the most benefit from it. If you are taking it on a daily schedule, take it at the same time each day. Take this medication exactly as prescribed. Do not stop taking it without talking with your doctor, especially if you are taking it for malaria. It is important to continue taking this for the length of time prescribed. Stopping prevention or treatment too soon may lead to infection or a return of the infection.

Inform your doctor if your condition persists or worsens. It may take several weeks or months to see improvement if you are taking this for lupus or arthritis. Hydroxychloroquine may not prevent malaria in all cases. If you experience fever or other symptoms of illness, seek immediate medical attention. You may need a different medication. Avoid exposure to mosquitoes. (See also Notes section.)


Nausea, stomach cramps, loss of appetite, diarrhea, dizziness, or headache may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly.

Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.

Tell your doctor immediately if any of these unlikely but serious side effects occur: arm/leg/back pain, fast heartbeat, hair loss/color change, mental/mood changes (e.g., anxiety, depression, hallucinations), ringing in the ears/hearing loss, worsening of skin conditions (e.g., psoriasis).

This medication may infrequently cause serious (sometimes permanent) eye problems or muscle damage, especially if you take it for a long time. Seek immediate medical attention if any of these unlikely but very serious side effects occur: sensitivity to light, vision changes (e.g., blurred vision, seeing light flashes/streaks/halos, missing/blacked-out areas of vision), muscle weakness.

Tell your doctor immediately if any of these rare but very serious side effects occur: severe stomach/abdominal pain, severe nausea/vomiting, easy bleeding/bruising, signs of infection (e.g., fever, persistent sore throat), seizures, shortness of breath, swelling ankles/feet, extreme tiredness, dark urine, yellowing eyes/skin.

A very serious allergic reaction is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction may include: rash, itching/swelling (especially of the face/tongue/throat), dizziness, trouble breathing.

This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.

Stress and Lupus


I am writing this post because I have become overwhelmed with stress lately. Big dramas in our family, big sicknesses, big deaths, I mean, it has been some few months lately. I tried to take a time out day and turned my phone off and all that, but they found me! It ended up being more stressful than if I were not having one (a time out day). So, in the interest of research, I went looking for something about lupus and stress. Here’s hoping your stress is mild and short duration… I would just like a smaller load please…

This first bit is from the Womens Health Zone.

Lupus Flare-Ups Brought On By Stress

It is known that women who have Lupus can experience flare ups due to stress. Lupus symptoms normally include fatigue, stiffness, joint pain, fevers, or a general lack of well being. When stress is experienced, these symptoms can become worse, or flare up.

You may be feeling perfectly fine and then one stressful episode will throw you into the throws of several lupus symptoms. Doctors are learning that stress has a significant impact on the disease.

For this reason many doctors are recommending stress management as a treatment to alleviate lupus symptoms.

While stress may or may not be a direct cause for lupus it is widely believed that it does have an impact on the quality of life Lupus patients experience. While stress cannot always be eliminated from daily life, it is possible to reduce it.

In order to live a healthy lifestyle, with less symptoms of lupus, you should try to learn stress management techniques, and reduce or eliminate stress triggers from your life.

You may find that exercises such as yoga or meditation can help to reduce stress levels and therefore reduce the symptoms of lupus.

From the website comes this information:

Daily Stress Must Be Managed in Lupus Patients

Monday September 3, 2007

Animals and People with chronic diseases


I am repeating this post because, believe it or not, while I was at the doctor’s office today, the Arthritis Today magazine had an article about pets and arthritis. Ironic, but I figured it made for a re-posting of this older post. Enjoy!


I have a cat. Her name is Shelby. She was a foundling who adopted me. She is also so much more than just a feline friend.

Shelby has an intuitive nature that allows her to see when I am ill and respond to me. When I am in bed, like now, she is laying next to me. When I am asleep, she lays either next to me or above my head. Some days, she is not around and that is usually when I am feeling good. She goes about her business as she normally would do.

When my lupus is acting up, though, she is right by my side, purring and rubbing on me and trying to help me feel better. It is uncanny, (or should I say, uncatty) how she knows without me saying a word, that I feel awful. She is not overly in my face, but she is on the periphery should she be needed.

While my cat is unique, she is not the only one who is intuitive. I read a story a few years back about a nursing home that had “adopted” a stray cat. The cat was allowed to roam the halls and “visit” with the residents. This cat had an intuitve nature too. It was discovered that the cat would go to a particular resident who was imminently ready to pass away. When a resident was at this point, the cat could not be coerced to leave the room of the resident. It would stay until the person passed away. It became noticible to the staff and they would know by the cats behavior, whether there was an impending death or not. They felt that the cat didn’t want the person to be alone, so it would stay on the bed with the person until after they passed.

I also saw a story about cats and patients with AIDS. The story said that those patients who had cats, tended to live longer than those who did not have a pet cat. Cats were the pet of choice because they did not require as much work as dogs and chronically ill people may not be able to give a dog the exercise they need.  Who knew?

So, my Shelby has this same empathy, but for me. She has been a true and loyal friend in my down times and always helps me with her presence. She is not a “talker” type of cat, but she is always here, by my side, when I need her most. She does not judge me, or make me feel I am worthless when I cannot do things. She is just here, faithfully, making me fell loved.

Funny that a cat can do that and so many humans can’t. We should take a lesson from the animals on this one!