Tuesday, November 29, 2011

Tapering Steroids after Solumedrol

As you know, I have had a recent MS relapse.  This one wasn’t one which I just wanted to “wait it out” for.  I’ve done that with very minor bumps/relapses along the road during the recent years.  In fact since switching drug treatment two years ago, my MS relapses had been more subtle and my MS has been more stable.

After this round of steroids (four days IV total and two days already high-dose orals), I needed to make a decision.  Whenever you have MS, it seems that there are always decisions to be made.  This one - to use an oral steroid taper or not.

The general consensus is that if a patient receives five days of IVSM, then an oral taper is highly recommended.  The drop-off of steroids is drastic after you’ve just had the equivalency of 5000mg of prednisone pumped into your body, then nothing.  But when a patient takes only three days of IVSM, then the taper may be skipped if desired by patient and doctor.

Thursday morning, Thanksgiving morning, I slept in a little later than anticipated.  After getting up early the previous three mornings to go to the neurology clinic for steroid infusions, I was glad to not have to set the alarm.  I knew I would be awake early enough anyways because of the steroids, so it seemed important to me to start off the day taking care of myself and to let my body do what it needed to naturally.  No alarm clock.

I also needed to decide whether to take some Decadron or not (Decadron is my oral steroid of choice as prednisone and I don’t get along too well).  I was right in between the two scenarios of whether to taper or not, but actually having had six days of steroids already (with the oral float over the weekend).  I was debating with myself. 

Read this post in its entirety:

To Taper or Not To Taper: Plummeting Steroid Levels

Sunday, November 27, 2011

Having a Relapse? When to Call the Doctor?

As a patient living with MS, knowing when you are experiencing a relapse is not such an easy task. I used to think that the objective definition - new or worsening symptoms present for more than 24 hours - was a clear enough definition to inform me if my MS was relapsing or not. I was mistaken.

During the first few years of living with MS, relapses did seem to be more clear-cut. It was apparent when something new occurred or when previous symptoms got worse and I would call the nurse. Each time, she scheduled me to see the doctor the next morning and I knew what was coming. I would be sent down the hall to the infusion suite to begin a new round of intravenous steroids.

By the time I called the office, I had been experiencing the symptoms for a number of days. It was undeniable that they were not going to go away on their own. The new and/or worsening symptoms needed the help of steroids to get gone. There was only one thing which would have prevented the need for steroids and that was if a urinary tract infection (UTI) were present. So providing a quick urine sample to be tested was warranted. By the way, only once did I have a UTI when I thought I was having a relapse.

Read this post in its entirety:

Identifying the MS Relapse: When Should I Call the Doctor?

Thursday, November 24, 2011

Carnival of MS Bloggers #102

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Thanksgiving, Gratitude, and Faith

by LauraX of Shine the Divine

It has been a week of gray skies, and gray emotions. Looking back and reflecting on these photos from October, the bright blue sky, reds, golds, greens and browns lifts my spirits. I'm so grateful to live in a place abundant in beauty.

by Judy of Peace Be With You

A loved one’s presence
provides prized companionship
and valued support.

Buoyed by precious love,
one’s spirit takes flight and soars
past stressful moments.

Though hard times exist,
a sense of kinship prevails.
One is not alone.

by Mary of Travelogue for the Universe

Wait a minute,
just a slice of time,
does it look like a pickle slice?

Wait a minute,
catch your breath,
can you hold it,
in your hands?

Wait a minute,
did you ever hear,
"Wait a minute,"
and it really meant to

Wait a minute,
60 seconds,
how far does Earth travel
in that time?

Wait a minute,
adult time out,
wait a sec is
another way to say,

Wait a minute,
or a second,
take a moment,
for a change.

by Michael from Perspective Is Everything

I wrote this more than three years ago and came across it again recently. In today's world, it seemed appropriate to publish it again. I hope you think so too.

Sick or healthy. Rich or poor. Thin or fat. Tall or short. Curly haired or bald. None of it matters when it comes to waking up happy everyday. What does matter is gratitude and perspective.

What makes a man rich? It is not money. There are plenty of poor people – “economically challenged” – that feel wealthy in ways that are beyond their wildest dreams. They are ‘loaded’ with family and friends, rich in experiences, and participate in life like tycoons. They are showered in immeasurable riches of making a difference to someone and to the world in which they live. These are the people whose vocabulary does NOT include phrases like “I will be happy when…”, or I would e happy if…”

These people know that there are two keys to happiness. Those keys are gratitude and perspective and they go hand in hand.

Gratitude comes from the recognition of just how much you already possess. Gratitude is the opposite of taking things for granted. The challenge for most people is that they don’t know what to be grateful for or where gratitude begins. There are hundreds of items on my list. Below are some of my favorites.

1. Eyes to see and read
2. Ears to hear and listen
3. Arms to hold. Hands to touch
4. Mind to think and understand
5. Heart to feel and care
6. Roof overhead & bed to sleep in
7. Food to eat and tongue to taste
8. Friends to care for & care for me
9. Family to love & spend time with
10. All of my good health. (Other than my MS, I have a lot of good health that I don't take for granted.)

These are all items that you can’t buy and that cannot be taken away from you. Even if I lost one of these, say sight or hearing, there is still much to be grateful for.

Recognizing the value of these assets is a matter of perspective. What’s your perspective? Where does your gratitude begin? Just how rich are you? It is my hope that if you are reading this, you are already a very wealthy person.

Participate. Make a difference. Live a life that matters.

A Problem of Faith
by Kim of Doc, It Hurts When I Do This...

Neurological diseases are a matter of science. They are measured and they are measurable, recipes so nuanced that had they been capable of being reproduced by gifted chefs, it is easy to imagine that Julia Child might have retired much sooner had she bungled early attempts to recreate them at Le Cordon Bleu.

Multiple Sclerosis, for example, involves a complex batter of CNS inflammation, brain and spine lesions, axonal degeneration, a certain number of oligoclonal bands, various clinical anomalies, fatigue, phantom pain, optic neuritis. The recipe is not exclusive; other diseases share some of these ingredients. Lyme disease, PML, Transient Ischemic Attacks, Diabetes, bone and blood cancers, atherosclerosis, migraines, Fibromyalgia, thyroid diseases, herpes zoster varicella, Parkinson’s. Think of how many recipes use eggs, milk, flour and butter. The light-weight chef might easily set out to make a perfect cheese soufflé and wind up with cheese bread. The dish might look and taste like a soufflé, but only the sophisticated palate of Jacques Pepin could vet this concoction and advise the staff as to whether today’s special is soufflé de fromage or pan de fromage.

The palate of a gifted neurologist can usually vet a cluster of neurological symptoms, evaluate the location and shape of lesions, count the oligoclonal bands in the spinal fluid and compare them to those in the blood serum, review the patient’s history of probable flares. The criteria for an MS diagnosis are quantitative as well as qualitative: four o-bands, three lesions, two flares. The degree of disability is measured by numbers on the EDSS, the number of new lesions and their sizes are measured, the number of flares is measured, and the speed of electrical impulses from the eye to the brain is measured. It is science and it is measurable, which suggests that, after a diagnosis is confirmed, it continues to be measurable. And if it is measurable, we assume that the measuring will continue to yield new epiphanies. We assume that these epiphanies will support the narratives we speak to ourselves about how to live.

One narrative is that taking medication will help us live better. The neurologist whose palate identified the sour taste of MS recommends a sweet and protective dressing of disease-modifying therapies. These recipes, too, are science. They are measurable. Their mechanisms have been studied and the dosages have been tested in FDA trials. Interferons, glatiramer acetate, natalizumab, fingolimod. Each has its way of preventing T-cells from damaging myelin. Clinical trials show a 30 percent reduction in relapses compared to placebo. The narrative we tell ourselves is that if we take these drugs then we will have 30 percent fewer relapses. The narrative bespeaks a slowdown in disease progression over our lifetimes. We assume that our improvement will be measurable and that these outcomes will support the narratives we tell each other about how to live well with MS. We do not need to have faith, we have science.

But this is not true.

The more we learn about the therapies, the more gray areas we encounter. Clinical trials, for example, showed a 30 percent reduction in relapses compared to placebo. But this means that the 600 people who took the drug had 30 percent fewer relapses than the control group of 600 people who took a sugar pill. The trial subjects all had a history of at least one flare per year. Their histories of frequent relapses made their outcomes easier to measure.

In real life, we all relapse at various intervals. Our relapse rate on any of the disease-modifying therapies will not reflect that of the trials. If we have a history of relapses that occurred every four or five years, we will have no way of knowing whether the drug is working until many years have passed. We know that relapses follow no particular pattern. The attacks are random. We have no way to measure the number of relapses that might have been had we not taken the therapy. The drug maker asserts no claim that the therapy will actually work at all. If there is a faith narrative within the research community conducting a trial, it is part of the method, the hypothesis that must be tested and then quickly abandoned if the measuring fails to support it.

Science extends no faith narrative to the patient community. Not faith, but rather, hope. We eagerly pick up on the hope narrative. Hope for a cure, new hope for experimental therapy, renewed hope for a cure. We hope that our new therapy will slow the progression and buy us time until there is a cure. HOPE 4 MS is the most common name for MS support groups. Hope can distract us from the breakdown of other narratives. Taking my medications will make my life better. The more compliant and knowledgeable I become, the better I will be, both physically and emotionally. I’m feeling worse than ever, but I have hope that a better therapy will come along.

Belief in a higher power offers both hope and faith. Religious narratives are useful and comforting. If I remain faithful to God, I will be rewarded. I pray to God and he hears me. Doing good will put me in favor with God. I prayed that God would restore my vision and after four years of blindness, he blessed me by restoring my eyesight. The most pious among us acknowledge no gray areas. Your prayers will be answered. If you give yourself to Jesus you will be saved. Tragedies happen for a reason; God wants us to learn something important from them. Evil is always punished; good is always rewarded.

The positive thinking narrative works similarly. It is the single loudest narrative in American culture. If I think good thoughts then good things will happen. Stay positive. A happy person is a healthy person. If I believe strongly enough that my cancer will be cured, then it will. The premise of positive thinking is denial. I’m going to beat my Stage IV cancer, I don’t care what the statistics say. Depression can be avoided if people would just get a positive attitude. I never get sick because I don’t believe in disease. It’s mind over matter.

When we speak these narratives to each other and to ourselves, in what, exactly, do we have faith? When our faith breaks down, what is it that makes us fall apart?

The core of our faith is in the belief that our narratives are true. Ten million people can’t be wrong. We lose our minds when we fear that something we’ve heard and repeated so many times was only wishful thinking.

The responses to this breakdown are many. Depression, drug and alcohol abuse, suicide. But the majority of us respond with denial. For most of us it is a necessary choice. The devout Christian doesn’t abandon her belief in Jesus for very long. Religion is useful and comforting and loopholes abound. God works in mysterious ways. Yes, of course, she says to herself, there is so much I don’t understand. She begins to feel better, her terror all but forgotten. Many of us can abandon the untrue narrative and embrace a new one, something that might be true. Copaxone wasn’t working after all, I’m going to stop. But Gilenya has a better relapse rate, this might be the one.

The bravest souls among us are also the boldest. Not only do they abandon the narratives they find false through a crisis, they regularly analyze their narratives and willfully cast out those they feel no longer serve them. They search for no substitutes. They are not unhappy people, only brutally honest. They can live in the moment and say what they observe, knowing that everything could change the moment they finish a sentence. They need no god or hope or platitudes to feel secure. Security itself is a false narrative.

Multiple Sclerosis constantly challenges our life narratives. Disease happens to other people, not to me. I’m going to be one of that 33 percent of MS patients who will never need a wheelchair. I’m not having a flare, just a bad day. I’ve had MS for twenty years and never had optic neuritis, so I’ll never have optic neuritis. I’ve taken Avonex for nine years, so this new problem with seizures must have been caused by something else.

The patient with chronic disease waits for science to catch up to the hope. Whether we embrace, abandon, or modify our narratives is a matter of coping and it is very personal. Our relationship with science is circular; through our life narratives, we maintain our faith that science will triumph, and this brings us hope. Science feeds our hope. The more it advances, the simpler the recipe becomes. Less is more. This new cancer treatment kills only the abnormal cells.

The murmur of new MS narratives can already be heard—the rest can be easily imagined. The MS treatment of the future will be individualized; we’ll know the person’s bio-markers, her blueprint, if you will, and deliver the two or three designer molecules to the right spot and presto, she’ll run around the block again. It’s so simple. Why didn’t we see it before?

This concludes the 102nd edition of the Carnival.  Thank you for making this such a wonderful community online.

The next Carnival of MS Bloggers will be hosted here on December 8, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 6, 2011.

Thank you.

Tuesday, November 22, 2011

My Recent Relapse

Living in Denial

In the past week or more, I have been feeling not my best.  Each day symptoms would begin to flare and I would hope to wake up the next morning feeling better.  One such evening, it was my eyes which were out of whack.  The color pink was beginning to fade, but the next morning things were back to normal.  There was no pain to report but one eye did appear darker than the other.  (Denial.)

More annoyingly, spasticity has been increasing behind my left leg.  The muscles have felt knotted and trying to stretch them out has been painful.  Baclofen had returned to a twice a day medication with modest benefit.  For me, when spasticity increases, my knees begin to hurt from the increased pull on them.  Living with joint pain anyways, that is one which takes me a while to associate in a timely fashion.  (Denial.)

I started having more difficulty getting up from a seated position and walking up the stairs.  I didn’t come up with a good excuse for that but just thought my symptoms were “acting up.”  But Thursday’s yoga class was very difficult for me.  My legs tried to convince me that I weighed two tons, but I told them back that there were sorely mistaken.  Some of the stretches focusing on the legs almost made me want to tear up.  (Less denial.)

Read this post in its entirety:

Denying Denial: Admitting to an MS Relapse and Taking Action

Monday, November 21, 2011

Blogger Missing in Action

Wow, where have I been?!  It's been 2.5 weeks since I posted on Brass and Ivory.  I don't really have much excuse except that I haven't been motivated to get stuff up.  I may have to "go back in time" and take care of that big gap.  LOL.

One thing which has been lacking is motivation on my part.  After the new engagement, I have actually spent a little bit of time researching wedding ideas online.  Then I discovered some new computer games which have been fun to conquer.

And during the past week, my MS decided to make a definite presence in my legs.  I'm actually having a relapse, the first real one with no question of steroid need in two years.  I started IVSM on Friday and took oral steroids over the weekend.  Then I'm continuing with 3 additional days of IVSM this week before Thanksgiving.

Already improvement is evident so treatment is totally worth it.  However, I am trying to keep my mood level as even very kind helpfulness and concern creates a deep need for isolation inside.  It's like the moodiness doesn't want to smile, even if I might.  At least I know that this will be over soon and I'll have strong legs once more. 

More posts to come soon.

Thursday, November 17, 2011

Before the Doctor's Visit

If you live with MS, you will see the inside of a doctor's office more often than you might prefer. It is part of living with any chronic disease. My neurologist likes to see his patients at regular intervals and the longest I've gone between scheduled appointments was six months. Visits were much more frequent during the first year.

A positive benefit of having so many appointments is that I've developed a system of preparation which works well for my doctors and me. Ahead of time I create a “doctor visit sheet” on my computer which is then printed out to take to the appointment. It helps me to keep track of what's going on with my health, gives me a dated record, and helps my doctor in giving me the best care possible.

Creating the doctor visit file:

Using your word processing software, create a new file and label it with the name of the doctor and the date of the office visit, for example “Simsarian, 04 April 2011.” Save that file in a new folder labeled “Medical Visits.”

What information should I include on the doctor visit sheet?

Read this post in its entirety:

Preparing for Your Doctor's Visit

Monday, November 14, 2011

RA and Antibiotics

In honor of Get Smart About Antibiotics Week, November 14-20, 2011, we are delving into the subjects of bacteria, viruses, appropriate use of antibiotics, and avoiding infection.

Bacteria and Antibiotics

Before the discovery of penicillin in 1928, bacterial infections were a major cause of death.  Bacteria are single-celled organisms which can live both inside and outside of the human body, including on the surface of non-living objects.  The bacteria, streptococcus pyogenes which is responsible for strep throat and some skin infections, was previously the cause of half of all post-birth deaths before penicillin (an early antimicrobial medication) came into common use.  The bacteria, staphylococcus aureus, was fatal in 80 percent of infected wounds.  Tuberculosis and pneumonia bacteria were also horribly dangerous.

Antimicrobial medications, or antibiotics, have saved countless lives during the past 80+ years.  However, when they are not used appropriately, bacteria can become resistant to medication.  An example is the frightening methicillin-resistant S. aureus bacteria, also known as MRSA.  As a bacteria becomes resistant to one medication, a stronger antibiotic must be developed to attack the evolved bacteria.  Improper use of antibiotics is how “super bugs” are created.

Read this post in its entirety:

Antibiotics, Bacteria, Infection, and Rheumatoid Arthritis

Thursday, November 10, 2011

Carnival of MS Bloggers #101

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Unexpected Surprises

by Laura of Inside MyStory

Have you ever done something that you felt was a pretty useless effort but you did it anyway because it was the right thing to do, never dreaming that you would get a better outcome than you should dare hope for?

Fourteen years ago I took the time to plant three white pine saplings in the back yard.  These were those free trees that are given to school children to take home and plant as part of Arbor Day celebrations. Trees is a liberal use of the word, they barely looked  like  trees, they were more like a piece of greenery that could be used in a floral arrangement than something that should be planted; a  little tuft of pine needles on the end of a stick. The fine roots at the end of those sticks were barely visible.

Rather than ignore them in their sad state, wrapped in a plastic bag, I followed the attached instructions and dug shallow holes in the back of my yard  for these three sticks.  Much to my surprise, all three of them took root.  Had I known they would actually grow, I would have planted them differently, but I had assumed they wouldn’t thrive in my care and dug three holes about three feet apart .

A few years pass, and to my surprise all three sticks survived but  I had  planted them too close together, and told a good friend to come and take the small one away to her yard, to give the others the room to grow.  She made the move while I was at work, and to my dismay she had taken the wrong tree.  Instead of the runt of the group, she had removed the middle sized white pine, a tree that had already grown to  a height of over 6 feet.

That middle sized  tree didn’t survive the shock of the move to her yard and quickly lost all its needles and was once again just a stick, just a lot taller than its humble beginnings.   The 2 foot runt was still in my yard, in the shadows of the biggest tree, which was quickly hogging all the sunlight and water.

Looking out in my yard today, I can still see that runt, struggling to grow in the shadows of the other sapling, which has now reached a height of almost 40 feet and is a magnificent specimen.   The runt is merely a dwarf version of the big tree, and has the same perfect shape in all of its now  8 foot glory.

They were the same when they went in the ground, planted in the same location, and given the same care.  I could not have projected this surprising outcome or tell you why one thrived while the other remained fairly static.

I didn’t expect these sticks to grow, but it provides me a reference as to how sometimes I go through the motions anyway of what is expected, and I end up being pleasantly surprised.

Looking at these two trees remind me of why I continue to take my daily disease modifying drug.  I’m not sure that those daily injections will ultimately make a difference in the course of my disease.  But I keep planting that needle, just in case I’m wrong. And I’m open to being pleasantly surprised.

from Travelogue for the Universe

from the clinic,
nearly left it
on the table,
by my diary,
of my shots
i have had
4 years
but the letter,
had a feel there,
out of place,
i had a
it was not a simple
but a message
my study
end soon.

I told
my patty,
my sweet voice
who monitors
it was
being told after
4 years
that this will all
She said,
everybody felt
that way.
Seemed like I was just getting used to it,
having more faith that this is the right
Knowing the
has a lot to do
and politics,
is right up there too,
and when we feel
it is because
stay tuned, you know as much as i do.
will find the results of my study in January
and discuss next steps.
4 years no exacerbation,
hope they keep me on what i am on,
whatever that turns out to be.


by Diane J Standiford of A Stellarlife

I used to think secondary progressive MS was the worst thing that could happen to me. I mean, after all, if you start at relapsing remitting, the progression to secondary is the end of the line---all downhill from there. Well, that may be true, but I'm not living it yet. In fact, I feel better than I used to.

Back in 1990, after my initial diagnosis, my hopes were on being that 50% who never would rely on a wheel chair. It seemed, for 15 years that I had made it! But, alas, here I sit, power chair at my side---always. Oh well, you takes your chances. I refuse to accept the whole "secondary progressive now you are just a downhill headed snowball" thing. Um, I don't roll like that.

In truth, some functions have come back that I thought were gone forever. Plus, there is a certain tranquillity with not waking up each day and finding a relapse starting. As my neurologist asked me 5 years ago, "When was your last relapse?" I couldn't remember, in fact, without all the blog and Face book reading I do, I'd probably have to really think hard to recall what they were like. Much of the uncertainty of MS is now gone. Here I am. Being 54 leaves me with more health issues to worry about than MS.

Like cancer. Had it once, don't want it again. Liver problems. Had them once, don't want them again. Diabetes runs in my mom and a brother (both of whom I look just like), don't want that.

Then there is mom's Alzheimer's---like a shadow that I see every so often, hanging around...certainly don't want that. My point is that MS has crept lower on my health concerns list. Secondary progressive can do that for ya. It has shown certain limitations, but I will always continue to try and erase those. Bottom line: there is so much more I CAN do than I can't do. My focus is clear for the goal of quality of life.

Back in the '90s, I was working at a job I loved, walking hills of Seattle every day, driving, but my quality of life was pretty sucky. I would never have admitted that then, because who KNEW where I might be in 10 years, but now I can say---it was really difficult.

I feel bad for people diagnosed with MS so early now, I do. Those years BEFORE my diagnosis, almost 8, where today a MRI would have pegged me, were terrible and scary. But they passed and newly diagnosed people now seem so freaked out! (As I would have been. I would never have gotten my job with the city that afforded me such great health benefits. I might even have headed back to UGH Indiana. So MANY things I never would have felt able to do, chances I would never have taken.) Without a CURE, early diagnosis just seems more of a trouble maker.

If I found out today that I will get Alzheimer's---what good will it do me? NONE. I already play all the brain strengthening games, eat the healthy foods, exercise; not a future I'm worrying about.

Secondary progressive MS. SPMS. There are worse things to have.

This concludes the 101st edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 24, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 22, 2011.

Thank you.

Monday, November 7, 2011

Educating for RA Awareness

Nobody would argue that we need more rheumatoid arthritis awareness.  I admit that I didn’t know much at all about RA until I was being diagnosed with it.  Why should anybody know much about RA until it touches someone in your life, family, friends, or public figure?  No real reason unless we’re in medicine.

If you read forums or blogs discussing RA, you will certainly have come across posts which focus on “what not to say….” to patients, or which focus on what bugs us, as a community, the most when others might say it during a social interaction.  I read these posts and can sympathize with those who are frustrated, but honestly I have not encountered the same level of annoyance or anger which is often expressed.

Here are a couple hypothetical scenarios to contemplate:

Scenario #1

You and a friend are in your early 20’s.  You’ve met for coffee and are chitchatting about life - boys, jobs, heatlh.

Read this post in its entirety:

RA Awareness: Be Patient with Your Friends, Educate, Don't Hate

Friday, November 4, 2011

What does Ehlers-Danlos Syndrome have to do with MS?

When researchers, observers, and hypothesizers begin to make connections, it can become very interesting.  I recently came across listings for research studies which involve patients living with one of two disorders: multiple sclerosis and Ehlers-Danlos syndrome. 

What is Ehlers-Danlos Syndrome?
Ehlers-Danlos syndrome (EDS) is the name given to a diverse group of inherited connective tissue disorders involving a genetic defect in collagen.  Ehlers-Danlos syndrome, characterized by joint hypermobility, skin extensibility and tissue fragility, can affect the skin, joints, and blood vessels.  The prevalence of EDS is estimated to be approximately 1 in 400,000 in the United States, but mild cases may be under diagnosed.  In comparison, prevalence of MS is estimated to be approximately 90 in 100,000 in the United States according to the Cleveland Clinic.

There are 11 variants of EDS which have been identified to date, each with differences in genetic, biochemical, and clinical presentation.  The specific collagen defect has been identified in only six of 11 variants or types of EDS.  Overlap between variants is common and more than one third of persons with EDS do not clearly fit into a single type.

Read this post in its entirety:

Ehlers-Danlos Syndrome and MS: Is there a connection?