For the first time since June 22 (when this most recent exacerbation began), I feel completely non-symptomatic!  For all the griping (most of it justifiable) that I do about Prednisone, it is a pretty good deal.  Twenty or so days of side-effects in exchange for being able to walk without dragging a foot, knocking something over because your arm is shaking, and being able to see 20/20 out of both eyes is an acceptable trade off.  I am on day 9 of 12 (dosage days), and am now at 2 pills per day (down from 6).  Excited that Sunday will be the last 2 pills.  Next week is withdrawal week, so nothing but water to drink (and my daily coffee) and three light, but satisfying meals.

In the past when I took Prednisone, I typically gained weight.  To date, I am net-negative two pounds in that regard, which I count as a big win.  For those who are reading this and faced with Prednisone, let me offer some suggestions (these are the things that I changed in my own diet):

• No alchohol of any type
• Water….lots of it.  (I have been mixing one of the 0-10 calorie packaged flavorings so it would at least help mask the Prednisone taste.)
• Don’t salt your food past what the cook already did
• No dessert (although on a couple of occurences I have snuck a twizzler or a miniature candy bar.)
• Limit processed sugar intake
• When you feel the need to eat something, Apples.  I could actually taste the apple!
• Sensible, single-serving portions

I have the 4 remaining days of pills, plus I’m allowing for 10 additional days of “withdrawal” before I go back to my normal diet (although it will be tinkered with as well).  As I said, the Prednisone has done the trick and put me back on firm ground, for which I am thankful.

The Copaxone prescription is in the works.  Dr. Boop’s office is working directly with the fine folks at Shared Solutions (more on them in a second) to get through all of the various insurance pieces.  We are, quite literally, just along for the ride on this one.  As I mentioned before, Copaxone is a very expensive drug, if you don’t have insurance.  We are very grateful that we have good insurance (I know, I gripe about the bureaucracy (and occasional ludicrousness) of it, but I am truly thankful).  We have been able to determine that once approved, the Copaxone will only cost us at a maximum $500/year (it’s almost $30,000/year if you have to pay 100% out-of-pocket).

I’ve talked a couple of times now about Copaxone, but let me give you a little bit more insight (as I understand it):

• It is a daily injection.
• Compared to the other MS treatment options, it appears to be the one with the least and most manageable side-effects.
• The other MS drugs are called Interferons while Copaxone is a Glatiramer Acetate.  Which basically means that the two drugs accomplish the same basic function, yet do it in remarkably different ways.
• It is produced by Teva Neuroscience, and was first recommended to the FDA for approval in the US on September 19, 1996.
• It has been studied in depth in the longest-running clinical trial for any of the MS treatments — over 15 years.
• For a very good overview of the drug, how it works, it’s approval process, and roadmap for future research, I recommend Chapter 11 of Dr. Howard L. Wiener’s book “Curing MS: How Science Is Solving the Mysteries of Multiple Sclerosis” (available at your local library or here).

Teva Neuroscience has established a team of RN’s who hold certifications in MS, as well as a team of Social Workers with training in Insurance, Counseling, and other assistance type programs.  They call this group “Shared Solutions.”  Their job is to assist with the insurance approvals, answer any patient (or family questions), and provide in-home patient training and assistance as needed.  I have spoken with the Nurse (who is also a MS patient on Copaxone), and once we receive our first shipment of drugs, she will come to the house to teach us all about Copaxone and daily injections (something that I am sure that eksimants is excited about).  When I was speaking with our Case Worker at Shared Solutions, I learned that they have a secondary discount with our prescription provider that might make us eligible for $50/refill discount, which would reduce our out-of-pocket from $500 to $350 annually.  Not sure if we meet all of the qualifications, yet we are optimistic.

More to come on the Copaxone front, as more is learned.

That brings you all up-to-date.  Overall things are going very well.

For those of you whom I knew in 1997 (and for the education of everyone else), 12 years ago this past Monday I was admitted to the hospital in Tulsa with the initial exacerbation, and my first spinal tap was 12 years ago this evening.  The knowledge that has been gained in the field of MS research in the last 12 years is nothing short of astounding (again, I refer you to Dr. Weiner’s book).  We have learned so much about how the disease works, how the drugs help, and so many other factors.  However, two key things remain unknown: cause and cure.  Many of the researchers, that I have read, seem to all agree that we are inching ever closer to knowing those two elements, but we are obviously not there yet.  So, we continue to hope and pray.  I urge you to take some time and check out a few websites to educate yourself:

• National MS Society
• MSAA
• MS Foundation
• Nancy Davis Foundation

If you have any questions about it, please ask and I’ll see if I can answer or help point you in a good direction.  The more we know, the better we are.  I am fortunate that I have access through my PhD program to all kinds of research journals that discuss MS.  I have hundreds of pages of research that I plan to read in my next quarter break.

On a non-medical note, sksimants, eksimants and cesimants are all doing well.  eksimants and cesimants had their baptism this past Sunday, it was a beautiful day.  Both sksimants and I have photos on our Facebook pages, so check them out there.  We are all doing well, and good things are afoot.