New MS Patients, Solumedrol, and Conversation

Over the weekend, I was working on a couple of posts for MultipleSclerosisCentral.com.  None of them are complete just yet and on Monday morning I was trying to finish at least one.  I even took my computer with me to the neuro’s office to get some work done while I was tied to an IV pole, but it didn’t work.

Why was I at the neuro’s office?  It was time for my monthly dose of IV Solumedrol.  The infusion center was packed full.  Part of that was due to patients fitting in their treatments before the Thanksgiving holiday (like me), the other part was due to the number of patients experiencing relapses.

I walked in at 9:20 AM and found only one empty chair out of six.  The seventh chair was full of pillows and a couple of blankets.  These are important items, so they deserve a chair of their own.  LOL.

Read this post in its entirety:

Monday Morning at the Neurology Clinic: New MS Patients, Solumedrol, and Friendly Conversation

The World Keeps Spinning

Oh my goodness. What has the world come to? It has been six days since I last posted and I don't feel guilty at all.

Well, hardly anyways.

It's sad. I didn't even give you links to material I've posted on HealthCentral recently. Maybe I'll "recreate" part of the week and do just that.

Or the incomplete posts of new MS bloggers. The list is getting longer and longer and I need to get on the ball.

I'm so far behind. :)

But...the world has kept spinning and all is fine.

One holiday down, and just a couple more to go. Hope all my friends in the US had a lovely Thanksgiving.

We had a nice dinner. Also played a good game of cards between turkey and apple pie. I insisted that we do something besides watch TV to entertain ourselves while we were digesting. It was fun.

Did anybody go out shopping at 3AM for the Black Friday specials? Not me!!!

I was nicely asleep at that time of day and planned to do so late into the morning. However, an incident occurred during which two people rolled over in bed at just the same time causing the unfortunate meeting of an elbow and an eye. That kinda cut short the cozy sleeping atmosphere and required some ice.

Today I should buckle down and do some actual writing. At least that or get my Christmas shopping done online.

Oh, and it just occurred to me, I should go downstairs and decorate the music studio. We have only three more lessons (weeks of lessons) before the official winter break and it would be nice to look festive.

I also need to decide what to do for the kids. Every year I have given the students a small gift at Christmas time. Nothing extravagant, but something tasty or fun. I may actually have to go to a store for this task.

Now my list of "to do's" is getting longer. I should probably stop now before I think of the many other things which need to go on that list.

So that's it for now. I hope that everybody did have a nice Thanksgiving and are enjoying the weekend. The sun is out and although it is cold, it looks to be a lovely day.

P.S. How many times can one person use the word "lovely" in one post? Believe it or not, I edited out a few occurrences upon re-reading. Must be the word for the day....Lovely.

Avoid Exhaustion During the Holidays

Are you ready for the holiday season?  Is everything shopped, shipped, and wrapped?  Have you decorated, cooked, partied, and cleaned up?  Are you traveled out, partied out, and fatigued-ly down for the count?

WAAAAAAIIIIIIIIIIITTT!!!.....Hold on, it’s not January yet.  We’ve only just begun the holidays. So far, we’ve had the Canadian Thanksgiving Weekend and Halloween.  Next up, this week, is the American Thanksgiving family/food/football/shopping extravaganza.  Then Chanukah, Christmas, and New Year’s.

Six weeks of go-go-go, high expectations, exhaustion, shopping, gatherings, more exhaustion, chronic illness, and an apparent no-end to the need to have fun, be merry, and to celebrate with an overabundance of, well, everything 

Did I mention exhaustion?  An excess of that, too, if we’re not careful.

Those of us who live with chronic illness, especially rheumatoid arthritis, know that the holidays can be anything but merry if we are not careful to pace ourselves and be smart along the way.  The best piece of advice I could give is to take care of yourself first and foremost.


Read this post in its entirety:

Living Well with Rheumatoid Arthritis During the Holidays - Avoid Exhaustion and Have More Fun

November Update - RA, MS, Weight Loss, and Holidays

Correction - Jen is another person who has commented positively on the weight loss. Thanks, Jen, you rock!!

Carnival of MS Bloggers #76

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

Fall Inspiration, MS Paradoxes, Bowel Management

Nature's Glorious Gifts, Like Music for the Soul

by Lisa Emrich of Brass and Ivory

Colorful leaves have been falling to the ground for weeks.  Rainfalls have drenched the ground.  The combination has left a gorgeous 'painting' upon my front sidewalk.  The gray stone is etched with images of leaves now blown away on the wind.

Nature is truly beautiful.  In fact, the universe works in glorious ways.

I am often the beneficiary of forces which keep my life balanced and moving forward, always leaving a smile on my heart.

Read this excerpt from my Monday's post on MyRACentral:

My voice has gotten stronger over the years since disease has moved in.  I used to be a shy person who never spoke up or tried to draw attention to myself.  However, I was fairly comfortable when I had a musical instrument at my hands to speak for me.

Lately, I’ve not been performing music on stage as frequently, but I have been using my voice to speak to people....

Many times in my life, I have experienced a minor disappointment, such as a student quitting lessons, only to have two new potential students call the next day asking about lessons.

So Monday I mention publicly that I haven't been performing as much lately.  Then Tuesday, I receive an email offering me the opportunity to perform in a concert this Sunday.  Unfortunately one rehearsal is scheduled on Saturday morning, during the very same time that I have a prior commitment.  I tell the contractor about this conflict, but mention that I am available for the other services (rehearsals and performance) if he still needs me.  The contractor asks me to reserve those other dates, just in case.

Thursday, I was traveling out of town to speak on a panel of health activists at a conference.  While at the event, I happened to meet up with someone and we had a long conversation during which I talked about being a musician.  He asked about the types of groups I play with and I mention my favorite gig - performing with the National Gallery of Art Orchestra.  I even mention that they have a concert this coming Sunday.

After leaving the conference and sitting on the train coming home, I get a chance to check my email.  What do I find?  The confirmation that I am needed to perform with the NGA orchestra this Sunday although I will miss one of three rehearsals.

In general with all of the traveling I've been doing, I have been practicing less.  My playing 'chops' are a bit mushy and out of shape (to be honest).  I was almost relieved that I might not be able to play this concert but not for the reason of turning down the opportunity.

However, I am needed to play.  I need to play.  I need to be able to play.  I spend some time Thursday night exercising my lungs and chest, breathing into the horn.  Coaxing a warm sound from the cold metal, vibrations traveling upon the air.  Praying that the body takes over and demonstrates more strength than I should be allowed to expect with the neglect it has suffered.

Friday (today) I go to rehearsal, music unseen awaiting me on the music stand.  I find music from composers unknown, horn parts both exposed and transparent.  Any wobbles or mishaps will be glaringly apparent.

But then rehearsal begins.  The lips cooperate, the abs stay strong and firm.  The blend of sounds created by different instruments reminds me of the falling colorful leaves outside.  I breathe in the warm air of beautiful music.  It feels good to my body.  Good for my soul.

I needed this gentle reminder from the universe that I really am a musician, an artist deep down.  Just as nature has left a piece of art on my sidewalk, the universe continues to color my life with surprises and affirmations.  For this, I am eternally grateful. 

The Paradoxes Of MS

by Blindbeard of Blindbeard's Multiple Sclerosis Blog

Right now I can think of 2 major paradoxes of MS. I'm sure there are more, but these are the 2 that are torturing me at the moment.

1. I'm always tired but I can never get any sleep. Sure, I sleep for about 5-6 hours a night, and sometimes I can squeeze in an hour nap, but more often I can't get any decent sleep. I probably wouldn't even get those 5-6 sub par hours of sleep at night if my night meds didn't knock me out. Even in the haze of my night drugs, I still get up 2-3 times to pee each night. I have cut down all liquids after 6 pm, but my bladder still wants me to get up to drain those 3 drops that it has produced in the 2 hours since my last bathroom visit. I wake up throughout the night and check the time to see how much sleep I've gotten since the last time I checked the clock. It's never as much as I had hoped to see. And lately, I have been getting up in the 3's instead of the 4's as I used to in the days of yore. I try and stay in bed until 4, but it is a struggle. One morning I spent 25 minutes messing with the dogs before I had to raise the white flag and get out of bed. In those 25 minutes I got the dogs so wound up by plucking hairs off their fluffy buns and trying to stick them up their noses, that it was get out of bed or risk being covered in stinky dog spit. I chose to get up with only 75% of my body covered in stinky dog spit. I didn't want the dogs to start plucking hairs off my fluffy buns and try to stick them up my nose. I can dish it out but I can't take it.

2. My MS Hug squeezes me so tight that the only way to get any relief is to wear something tighter. Across my back and chest, right where a bra strap goes, is a line of pain and tightness that is only made bearable by squeezing the sh*t out of it. I have been wearing my tightest cast iron sports bra to help ease the pain. It is so supportive that I could use a jackhammer all day and not get the slightest jiggle out of my unmentionables. Even now, I have an Ace bandage wrapped so tightly around my chest that I can't draw a deep breath, but if I don't wear it, I can't draw a deep breath from the pain and tightness from the hug. I have Sugarbowl and Princess beat on my back and rub it as hard as they can. The pure ecstasy from that makes me moan and groan like I'm in the deepest throes of passion -- not exactly something I want to do with my sister and niece. They are good sports about it and take turns so one can rest her arm while the other beats the crap out of me. Sometimes abuse feels sooooo good! Sugarbowl is the best when it comes to any MS related help I need. She has the arm support thing down just right. She understands that I need a strong arm that I grab, not grabbing my arm like my mom does. My mom grabs a hold of my arm and runs off, dragging me behind. Sugarbowl lets me take her arm and lets me set the pace. You would think that a woman who works in a nursing home would know better than to drag a gimp along, but she hasn't figured that out yet. Sugarbowl also has the beating of my back down to a science. She knows to work it across the line of pain with a combination of hard rubs and deep pounding of her fists. I was in so much pain the other day, but she had to go to work, and I wished I could afford to pay her to stay home and work me over like she was tenderizing meat. Alas, I could not afford to have her stay home so I wore a corset of Ace bandages all day, waiting for her to get back home and abuse me some more.

Like I said, these are the only 2 paradoxes that come to mind right now, only because they are the 2 that won't let me forget they exist. If you have others, please let me know. I'm always interested in others' sufferings, even though I feel like I'm running a huge risk by asking. I'm afraid that my body will decide that it needs to add those problems to my already impressive repertoire of pain and agony.

Regulation, Instigation, of Constipation in My MS

by Diane of A Stellarlife

Constipation affects many people with multiple sclerosis.  I read all the "...most of the people..." symptoms as soon as I got my diagnosis and began my planning.

All my life I had been very regular.  Up in the morning, deposit in the loo, off for a run, home for my day to begin.  Even as a child, up in the morning, loo, on with day.  I took it for granted.  Never imagined anyone else had a problem.  Then I saw a photo of my uncle Arthur sitting on the john, chin in hand and written on the back was: "The Thinker."  My questions about why that was so funny led to my first understanding that for some a daily quick deposit is not so quick.

Then I read "the word" in an MS pamphlet.  Next I read how to avoid this problem, just in case it struck me.  I could understand how easily it might happen, since our ability to move becomes compromised.  When I needed my first scooter, I experienced the big C.   (Well, I DID experience Cancer at that time, but for this story that "C" is constipation.

WARNING GRAPHIC WORDS AHEAD
I no longer found the morning dump so reliable and I learned (after 40 years) that the word my mother taught me was "Grunty", NOT "Grunny."  Imagine my shock and embarrassment.  I had never needed to "grunt" before, but I certainly heard that a lot in my work place restroom.  (I kept asking friends, "Are they SICK?"  But, learned it was expected during most deposits. SHOCK)  So, then I had to take action.

First I analyzed my stools. (I warned you--this is not for the meek.), and noticed they were very dark.  Dark and hard as a rock.  I then examined my diet.  Yes, eating enough fruits, vegetables, whole grains...so I increased them all.  No change.  I swore Mr. Hankey was hard as iron.  LIGHT BULB MOMENT!  My multi-vitamin was IRON PLUS!  I thought that would be good for my MS.   Switched to non-iron.  Started reading labels of all the cereals and food I ate "iron-enriched" UGH!  I would probably explode in my next MRI!!

After a month of no extra iron, my stools returned to normal!  But, moving the bowels was still not quite right.  I remembered reading in Katherine Hepburn's autobiography that she had something called, "Psyllium," every day and she started her day with a bowel movement and dip in her lake.  I told this to my partner, who laughed and explained that was what Metamucil was.

AH!  I had seen many ads for this Metamucil stuff and although I lacked a lake, I would take it every day like my hero-actress (heroine-actor? eesch) Kate.  I began.  Not much happened. I called my doctor, "Could I take a higher dose?"  He agreed that might do the trick.

While I didn't like the consistency or color (orangish) of my poo (I WARNED YOU) I was once again going very easily.  Too easily.  It would come too fast and without warning.  What a messy situation for someone using a walker and unable to run to the loo.  I was starting to get discouraged.  Then, another light bulb---my belief was that simply drinking all the water necessary for the Metamucil dose was way more water than I'd ever drank at one time---what if I upped my water to that level and dropped the psyllium?  My fiber intake had been enough for many years...

It worked.  My bowels now move daily and are of perfect color and consistency.  I can even control what days I might want to hold off (like for doctor appts.) and up the next days water.  Such a simple fix.  I still have a nervous bowel---if I am anxious about something (like a visit from strangers) all bets are off and I can't ALWAYS make it in time to the loo, now that I must use a power chair, slow moving lift chair, transfer---but I am getting better each year at knowing when to start heading for the loo.

Yes, I discussed this with my doctors.  The nasty neuro I dumped, explained how MS effects the bowels and she showed me a poster on her wall that points out all the nerves there--wow!  Who knew?  She offered NO solutions or suggestions. My primary guy was his usual, "That is interesting."  He is still learning.   AND he is open to anything.  He KNOWS he is not God.  He also knows ME and how I experiment on myself.  My current neuro just brushed me off as usual.  She doesn't even see me anymore--has shoved me onto her rehab doc.  (I refused to be scared by her dire predictions for me and refused her drugs of choice.  She hates the sight of me.)

So...water, water, water, every other day 64oz, 32+ in between. Looking back, I really don't think this is MS related for me at all.  As a child I rarely drank and got my water from food, hense, I was over-weight.  When I got a handle on my weight, I began drinking water whenever I felt hungry.  I was not hungry, I was thirsty.  Since moving became difficult, I lowered my water intake without realizing it.  (To avoid extra trips to loo.)

When people tell me they just got DX MS, I tell them to drink more water.  Now, with the idea that iron is backing up across the blood-brain barrier, I wonder if that hurt me.

Too much IRON BAD.  WATER GOOD.  True for just about everyone!


This concludes the 76th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 2, 2010. 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 30, 2010.

Thank you.

Comments for this post.

Of the 75 Tysabri patients who developed PML, 15 patients have died to date.

The number of Tysabri patients who have developed PML (progressive multifocal leukoencephalopathy) has reached 75 as of November 2, 2010 says Biogen Idec, Inc.  The company also reports that an additional death among Tysabri/PML patients has occurred, bringing that total number of cases to 15.

"The number of PML cases is important because if the infection rate climbs too high, the drug's sales growth may drop. Regulators have said that they watch the cases, but have concluded that the benefits of the medicine to MS patients outweigh the risks.

The overall global PML rate is about 0.96 per 1,000 patients, a company spokeswoman said, which still falls within the 1-in-1,000 rate previously seen in clinical trials and implied on the drug's label. But the rate has been rising, and multiple Wall Street analysts raised concern about the trend on Wednesday as the MS market is becoming increasingly competitive."

Biogen reports that as of Sept. 30, 2010, there are 55,100 patients using the drug around the world and that approximately 75,500 patients have used the drug since its launch.  Of the 75 total cases of PML, 33 cases were in the United States, 38 cases were in the European Union, and 4 cases were in other areas. 

"The most recent data update translates to a rate of 1.49 cases per 1,000 for patients on the drug for a year or longer, but rises to 1.97 per 1,000 for those on the drug for two years or longer.

Looked at another way, the rate is about 1.49 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.37 case per 1,000 patients in those using it for one to two years, and it is essentially nonexistent in patients using it for less than a year."

According to these growing numbers, the death rate of Tysabri/PML patients is at 20%.  I wish that we knew the condition of the other 80% of PML patients.  Unfortunately, I do not know the breakdown of the location of the 15 PML-related deaths.


Source: Multiple Sclerosis Resource Centre and  NASDAQ Copyright (c) 2010 Dow Jones & Company, Inc. (18/11/10)

Edited to Add:
The distribution of PML cases and number of deaths reported by Biogen and/or FDA is as follows:
Month reported; Total # PML cases; # in USA, # in Europe, Other; # Deaths
Nov 2010 - 75 total - 33; 38; 4 - 15 deaths
Oct 2010 - 70 total - 29; 37; 4 - 14 deaths
Sep 2010 - 68 total - 28; 36; 4 - 14 deaths
Aug 2010 - 63 total - 25, 34; 4 - 12 deaths
July 2010 - 58 total - 22; 32; 4 - 12 deaths
June 2010 - 55 total - 20; 32; 3 - 11 deaths
May 2010 - 49 total - 19; 27; 3 - 11 deaths
April 2010 - 46 total - ?; ?; ? - 11 deaths
Mar 2010 - 42 total - 15; 24; 3 - 9 deaths
Feb 2010 - 35 total - 11; 21; 3 - 8 deaths
Jan 2010 - 31 total - 10; 19; 2 - 8 deaths
Nov 2009 - 27 total - ?; ?; ? - 5 deaths
Sep 2009 - 24 total - 8; 16; 0 - 4 deaths
July 2009 - 11 total - 3; 8; 0 - 1 death

Here is the Morning Equity Briefing published on Davy Research website regarding the new PML cases and their impact on Tysabri usage.

Elan Corp (ELN US)
Monthly safety update on Tysabri
Jack Gorman
Closing Price: $5.55 Rating: Outperform 30/06/09

FACTS: The latest safety update on Tysabri was released last night (November 16th). Five new PML cases were confirmed during October and this brings the total to 75. Four of the cases were in the US, bringing the total there to 33. There have been 38 cases in the EU and four in the rest of the world. Fifteen of the 75 patients (20%) with PML have died.

ANALYSIS: The new cases have increased the overall incidence of PML in those patients exposed to Tysabri to 0.96 per 1,000 from 0.91 per 1,000. Observing the data by treatment epoch, the new cases look to be in patients with at least 25 infusions.

Distribution of PML patients by treatment epoch has stayed broadly consistent for some months now (note that all data are per 1,000 patients exposed). For 1-12 months, the rate remains at 0.01, indicating little or no PML. For 13-24 months, the rate is 0.37 compared to 0.38 previously. For 25-36 months, the incidence rate remains highest at 1.49, up from 1.44. The 37-48 month increased from 0.93 to 1.01 but remains lower than the 25-36 month cohort.

The data also outline, to 95% statistical confidence levels, what the estimated upper and lower bounds may reach for each of the treatment epochs. There is little change in the mix here and it continues to hover close to 2.0 for the longer durations.

DAVY VIEW: We would not expect that this monthly data will materially change physicians' or regulators’ views on Tysabri’s risk/benefit profile, as there looks to be no sharp increase in either the actual PML rate or the statistical upper bounds of incidence.


UPDATE: Biogen announces updated Tysabri/PML statistics.  The total number of cases is now at 85 patients with the addition of 6 new cases reported in January 2011.  The number of deaths holds at 16 patients.  Of the total PML cases, 36 were in the U.S., 44 were in the European Union and five in other areas.