Hiring a Doctor


Say What? Hiring a doctor? Yup, that’s what I said. Did you know that many doctors seem to forget that we in effect “hire” them for their services? They fit the definition of an employee, or sub contractor even because we pay them for their time and services rendered.  So, why bring this up? Let me explain…

When you have a chronic disease, like lupus, you become well versed in medical terminology, procedures, testing, and of course medications. It is par for the course due, in part, to the fact that depending on your disease course you will be under the care of different doctors for different things that can arise.

For example, I see my family practitioner for everyday things like colds and flu. I see my rheumatologist for my joint pain and other “lupus” related things. I see my neurologist for the brain associated effects, like periphreal neuropathy and migraines. I have also seen orthopedic surgeons, general surgeons and a host of ER doctors. I also see a therapist, because I am depressed. Go figure.

In the course of this disease, it is important for all the doctors that you see to share their information with each other so they can all stay on the same page as it were. Otherwise, you may find that medications and or treatments may be harmful because one does not know what the other has prescribed.

Here is where the hiring comes in. You need to see a family doctor. If the one you currently see feels the need to belittle you or act as if your disease is not real, then fire them and find one who listens and is proactive. Same goes for all the other doctors you may see. I personally have fired a few doctors in my time. Right now I am awaiting an appointment with a new neurologist for example, because my last one did a slew of tests and whenever I tried to get in to see him to discuss the results, there was always some excuse for having to reschedule my appointments. So, I got a new one and I hope he is a good one. Time will tell.

If you learn as much as possible about your condition, then you are a well informed consumer and are able to discern whether or not your particular doctor is right for you. If your doctor does not like the fact that you are well informed, then find another one who does. This is YOUR body, YOUR disease, and YOUR treatment. Not the doctor’s. Knowledge is power. A good clinician will not only encourage you to become informed but will welcome any questions you may have about a certain treatment or procedure or medication without making you feel stupid. Yes, some doctors seem to like the POWER, but YOU are the one paying them so if you are not comfortable, find another one.

When dealing with a chronic disease it is important to remember that YOU are the most important player in this game. Your team consists of your doctors, nurses, support groups, therapists, friends and family. Making sure they all share their information is one of the most important things you need to do in your managed care of your disease. It is vital to stay on top of it, even if it means the occassional phone call or appointment to discuss the finer points of  your treatment.

Ultimately you are in control of  your care. Being a well informed patient has never been more important than now, when you are dealing with a chronic, non-curable disease. Stand up and be assertive for your own health and well being. No one knows how you feel more that YOU. So if that doctor acts like it is all in your head (and yes, I had a few who mentioned it must be because I was a woman looking for attention) then RUN out of that office and find one who listens and respects your symptoms and who wants to find out why! I did and now I have a pretty good team assembled. It is up to you to take care of this.

The Ride is Getting Bumpy


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 and weight gain


There are many reasons people are given the corticosteroid prednisone. They run the gamut of medical conditions. While most people only use a short burst, such as a medrol pack, for a limited amount to make the illness better. I am not talking aobut these types of things. I am talking about the use of long term, months of steroid use in treatment of a disease.

I found this article on the mayo clinic website which discusses the results of long term steroid use and weight gain. It is interesting to me because I personally have gained weight and lost weight and gained weight while taking these medications. I am sharing it for those others who use these medications long term. I hope you enjoy it.

Prednisone and other corticosteroids: Balance the risks and benefits

By Mayo Clinic staffCorticosteroid medications — including cortisone, hydrocortisone and prednisone — have great potential in the treatment of a variety of conditions, from rashes to lupus to asthma. But corticosteroids also carry a risk of side effects. Working with your doctor, you can take steps to reduce these medications’ side effects so that the benefits of treatment outweigh the risks.

How do corticosteroids work?


Illustration showing adrenal glands  Adrenal glands

Corticosteroids mimic the effects of hormones your body produces naturally in your adrenal glands, which sit atop your kidneys. When prescribed in doses that exceed your body’s usual levels, corticosteroids suppress inflammation, which can reduce the signs and symptoms of inflammatory conditions, such as arthritis and asthma.

Corticosteroids also suppress your immune system, which can help control conditions in which your body’s immune system mistakenly attacks its own tissues.

How are corticosteroids used?

Dozens of corticosteroid medications are available today. The drugs are front-line treatments for rheumatoid arthritis, lupus, asthma, allergies and many other conditions. They also treat life-threatening conditions such as Addison’s disease, in which the adrenal glands don’t produce enough steroids, and help prevent organ rejection in transplant recipients.

You can take corticosteroids:

  • By mouth. Tablets, capsules or syrups help treat the inflammation and pain associated with certain chronic conditions, such as arthritis and lupus.
  • By inhaler and intranasal spray. These forms help control inflammation associated with asthma and nasal allergies.
  • Topically. Creams, ointments and roll-ons can help heal many skin conditions.
  • By injection. This form is used to treat such signs and symptoms as the pain and inflammation of tendinitis.

What side effects can corticosteroids cause?

Like all medications, corticosteroids carry a risk of side effects. Some side effects can cause serious health problems. When you know what side effects are possible, you can take steps to control their impact on your health.

Side effects of oral corticosteroids
Because oral corticosteroids affect your entire body instead of just a particular area, this form is the most likely to cause significant side effects. Side effects depend on the dose of medication you receive. Within days or weeks of starting oral therapy, you may have an increased risk of:

  • Elevated pressure in the eyes (glaucoma)
  • Fluid retention, causing swelling in your lower legs
  • Increased blood pressure
  • Mood swings
  • Weight gain, with fat deposits in your abdomen, face and the back of your neck

When taking oral corticosteroids longer term, you may experience:

  • Cataracts
  • High blood sugar, which can trigger or worsen diabetes
  • Increased risk of infections
  • Loss of calcium from bones, which can lead to osteoporosis and fractures
  • Menstrual irregularities
  • Suppressed adrenal gland hormone production
  • Thin skin, easy bruising and slower wound healing

Side effects of inhaled corticosteroids
When using inhaled corticosteroids, some of the drug may deposit in your mouth and throat instead of making it to your lungs. This can cause:

  • Coughing
  • Hoarseness
  • Dry mouth
  • Sore throat

If you gargle and rinse your mouth with water — don’t swallow — after each puff on your corticosteroid inhaler, you may be able to avoid mouth and throat irritation. Although some researchers have speculated that inhaled corticosteroid drugs slow growth rates in children who use them for asthma, studies show that they don’t affect their final adult height.

Side effects of topical corticosteroids
Topical corticosteroids can lead to thin skin, red lesions and acne.

Side effects of injected corticosteroids
Injected corticosteroids can cause side effects near the site of the injection. Side effects may include pain, infection, shrinking of soft tissue and loss of color in the skin. Doctors usually limit corticosteroid injections to no more than three or four a year.

Reduce your risk of corticosteroid side effects

Despite their side effects, corticosteroid drugs remain an important medical treatment. To get the most benefit with the least amount of risk:

  • Try lower doses or intermittent dosing. Newer forms of corticosteroids come in varying strengths and lengths of action. Ask your doctor about using low-dose, short-term medications or taking oral corticosteroids every other day instead of daily.
  • Switch to nonoral forms of corticosteroids. Inhaled corticosteroids for asthma, for example, reach lung surfaces directly, reducing the rest of your body’s exposure to them and leading to fewer side effects.
  • Make healthy choices during therapy. When you’re on corticosteroid medications for a prolonged period, talk to your doctor about ways to minimize side effects. You may need to reduce the number of calories you eat or increase your physical activity to prevent weight gain. Exercise can help reduce muscle weakness and osteoporosis risks. And taking calcium and vitamin D supplements and prescription bisphosphonates, such as alendronate (Fosamax) or risedronate (Actonel), can minimize bone thinning due to corticosteroids.
  • Take care when discontinuing therapy. If you take oral corticosteroids for prolonged periods, your adrenal glands produce less of their natural steroid hormones. To give your adrenals time to recover this function, your doctor may reduce your dosage gradually over a period of weeks or even months. If the dosage is reduced too quickly, you may experience fatigue, body aches, lightheadedness and difficulty recovering from minor illnesses.

Weigh the risks and benefits of corticosteroids

Although they may cause a range of side effects, corticosteroids may also relieve the inflammation, pain and discomfort of many different diseases and conditions. If you work with your doctor to make choices that minimize side effects, you may achieve significant benefits with a reduced risk of such problems.

Topamax for migraines


This is yet another new medication my neurologist prescribed for me. I have found that researching medications is helpful to see how it affects me and why it is prescribed in the first place. This information I found on the website, www.healthcentral.com. Let me know if you have taken this and if it worked for you. Thanks!


Learn more about the side effects, dosage, and details of Topamax, one of only four medications approved by the FDA for the prevention of Migraines.

Topamax (Topiramate)

by Teri Robert, MyMigraineConnection Lead Expert

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Topiramate is a neuronal stabilizing agent (aka anticonvulsant medication) that has proven effective as a Migraine preventive for some patients. It is one of only a few medications to have been approved by the FDA for Migraine prevention. As with other drugs in this category, patients should start at a low dosage and slowly taper up to therapeutic levels. The daily dose should be taken in two divides doses approximately 12 hours apart. If discontinuing this medication, it is essential to slowly taper off rather than discontinuing abruptly.


Type of medication: Rx, preventive, neuronal stabilizing agent (anticonvulsant )


Special Notes:

  • At the Migraine Trust’s 14th biennial International Research Symposium, noted Migraine specialist Dr. Stephen Silberstein noted:
    • The best results were achieved at a dosage of 100 or 200 milligrams of topiramate per day, a lower dosage than that used to treat epilepsy.
    • The most commonly experience side effects were nausea and tingling of the extremities.
    • “What was amazing in this trial was the effect on weight. The patients who got topiramate lost, on average, 3.8 percent of their body weight.”
  • In an interview with Teri Robert, Dr. Silberstein elaborated:
    • “The key to success with Topamax is a very slow titration up to the therapeutic dose. Patients should begin taking only 15 mg, once a day, and taper up slowly from there, being sure to take it in a split dose.”
    • “The effective dosages are lower than you might think. Many patients achieve good results at only 50 mg per day.”



  • Seek immediate medical attention if you experience blurred vision, changes in vision, or pain in or around the eyes during treatment with topiramate. These may be early signs of a serious side effect.
  • Do not stop taking topiramate without first talking to your doctor, even if your symptoms have improved. It is important to continue taking topiramate to prevent seizures from recurring.
  • Carry or wear a medical identification tag to let others know that you are taking topiramate in the case of an emergency.