ELLIE'S BLOG on Living Well with MS

Cures?..  Total relief from  MS Symptoms?..  Progression prevention? The answer is no to all of these. 

We with MS do get a shorter duration and decrease frequency of a relapse which is helpful.  And there does appear to be a decrease in the progression of the disease  and irreversible damage from these drugs. But the response is individual. Some people get more help from them than others. But when it comes to a cure these drugs are not it. It looks like the "cure " is a long way away.

So why are these Interferon's and other drugs so expensive if they're not curing us or keeping relapses and progression totally under control?  People with MS are taking these drugs every 1-3-7 days or every month for years and years. And the costs are increasing yearly on all the drugs.Whenever a new drug comes onto the market of course the price is higher.  But then all the others increase their prices too. It's like a cartel.

There is finally increased reporting in the National Media as well as Professional Journals and web sites regarding this issue.

If I mention to someone that my MS drug costs (especially my interferon) are awfully high. Their response sometimes is to question me why I don't take generics. When I explain to them there are no generics and tell them the cost of these drugs ($35-45,000 a year)some people don't believe me. They can't understand how a drug could cost so much if it wouldn't be a cure or at least prevent relapses or progression by taking them.

I myself started on the MS interferon drug Betaseron in the late 90's when it cost $10,000.a year.  It didn't cure me but it did decrease the length, severity and frequency of my relapses.  However gradually over a 10 year period it became less effective and I was progressing.  I happened to change neurologist's at this time and was switched to a different MS interferon drug Rebif .

This again slowed down my progression, decreased the frequency and severity of my relapses and I was able to gain back some the functional ability that I had lost.  So to me these drugs are a miracle!!  They do give me and my family a better life. A life which I do not want to lose. However, when I stop to think of the cost of these drugs I am beginning to question how cost effective are they for what they are giving me.

By the time I had reached the age of 60 I found working even part time  with MS very difficult.  So I stopped and went on Social Security Disability. Then two years later I was in Medicare.  I read in one of the MS magazines that Betaseron was offering people who did not have prescription drug coverage like those on Medicare financial help. The cost of the Drug Betaseron was then $1200 a month with the last two months free.  This was wonderful and as I was also taking some other expensive drugs it helped immensely.  Then when I turned 65 I received a phone call from the Betaseron Financial Assistance program. I was told they could no longer cover me because I was now available to receive NY State EPIC program for Seniors. And from my financial statements they felt I would fit into the EPIC program.

I did apply and from then on until January 1 of this year I received  total coverage of all of my drugs at an extremely reasonable co-payment price. This was offered along with either a quarterly fee or a deductible dependent on your income.  And as drug costs were skyrocketing and my need for prescription drugs increased as I also became a diabetic I would thank God for Epic in my prayers at night. 

There was a lot of talk when Medicare D was passed that Epic would not be able to be used with Medicare D.  This was a quandary but Epic continued to cover us until it  was determined that all State's Prescription Drug programs for seniors would be able to wrap around the Medicare D program.  And when I joined Medicare D my costs went down slightly. But Epic's cost for my drugs would have gone down dramatically.

As cuts were occurring in States across the country due to the recession I did wonder if we might have to pay a larger co-pay or fee . But Epic kept saying we will always be here for you. However this year Governor Cuomo's budget dropped a bomb by essentially gutting Epic. They are now only offering help in the doughnut hole not a wraparound. The first prescription drug I filled this year was Rebif. I was immediately in the donut hole.

All the articles I read reported that seniors would only have to pay $1000 more a year for their drugs.  They certainly weren't talking about people with expensive drugs like MS or Cancer.  My drugs will now cost me over $5,000.00 a year.  And most likely  more because the prices keep going up. The AARP Bulletin had a long and thorough article on this in their Dec. 2011 Bulletin . aarp.org/bulletin .  They stated they plan to address this and try roll back the cuts when the NY state legislature reconvenes in January . Meanwhile they suggested people check out NeedyMeds.org  or the assistance programs of pharmaceutical companies or charities.

My research on alternative ways to lower my drug costs is bringing up more questions than answers. This could become a full time job for a person with 2 chronic diseases and who take many drugs. You have to look for help for each drug on different sites as requirements for eligibility are all different and having Medicare D doesn't help. For me my MS interferon drug  Rebif is foremost as it is the most expensive.  If it was just my Diabetes drugs that would be manageable. But it's the MS drugs that just bust the budget .

There is research going on now where they are using 2 drugs together to increase effectiveness. And they are speculating that a cost of $100,000 might be too high for most patients with MS.  You think so...Really!!

In my research for checking my Medicare D plan I also researched what could be done about the outrageous costs. I knew most European Countries and Canada pay much much less for these drugs. And I had heard that the VA costs and retired federal workers too pay less for these drugs. So why are the disabled, seniors and disabled seniors on Medicare paying so much?   If is competition that bring down prices it's not working . The prices in the private sector are all going up!  And as they are manufactured for all countries the same why are we paying so much more than everyone else?

I've read many articles about this. But the article that seem to cover all my questions was a recent article by  Tom Valeo in the American Academy of Neurology Medical Journal.

A recently published study by the ANN concluded that the cost of the MS drugs in the U.S. lowers their cost effectiveness scores significantly.  They were not saying they were not effective or that they shouldn't be used by people who need them . But it's the costs of these drugs that are the problem.  They did a study of 910 patients for 10 years and determined cost effectiveness using a complex formula . They found that lowering the price of drugs to the levels in other countries would improve cost effectiveness markedly here in the United States.

Dr. Corboy of the University of Colorado School of Medicine and a Fellow of the ANN reported that the cost of these drugs have almost doubled since 2008. (I look back to 1998 where it's a 3-4 times increase).   Dr. Corboy feels one of the reasons for the high cost of medications is the fact that Medicare is prohibited from negotiating prices with the drug companies as other nations do.

But here in the United States  the Veterans Administration, the Department of Defense, the Public Health Service, and the Coast Guard may negotiate. And they do receive dramatic discounts. "For them glatiramer acetate and the interferon's cost about $14,000 as opposed to $41,000 per year" Dr. Corboy says.  And he goes on to state that the costs are even lower in Canada and in Europe. And even if you do qualify for financial assistance the cost to you can still be too high for you to be  able to afford the drug. The last remark in the article by Dr. Corboy sums up my feeling exactly.

" It's like reverse capitalism.  In other businesses, when competition goes up, prices usually go down but it's the opposite with drugs." -_JOHN CORBOY.M.D. To read the informative article that much of my information came from go to:

<http://patients.aan.com/resources/neurologynow/? event=home.showArticle&id=ovid.com:/bib/ovftdb/01222928-201107060-00005

This is a problem that needs fixing.  Up until 15 yrs. ago there was no specific drug to slow down relapses and progression in MS. Then we had Betaseron, followed by Copaxone, Avonex, Rebif and Tysurbi and now Gylenia. This is so promising. And there are many more drugs in the pipeline. But will their costs prevent many of us to be able to take them and live better productive lives? With all my heart I hope not!

Well it's time to take my expensive interferon injection:

It's too expensive but I don't want to give up what it does for me!

Have a good 2012 everyone.

ellie 

It's hard to stay up when MS is pulling you down.  Whether it's pulling you down due to lack of energy including that terrible MS fatigue or because you haven't come out of an exacerbation speedily yet. Lets be honest you can be upbeat and positive for only so long and then it's gets to be difficult. And your veneer is coming off and  you know you're not any fun to be around. 

I find that at this time I gravitate to a little more spiritual reading and my poetry  books are open again as well as trying to take time to just be quiet and meditate.  It does help. What also helps is trying to look extra nice every day  adding favorite jewelry or scarfs to my wardrobe which I coordinated nicely with color.  Of course I'm not going anywhere. I'm just trying to look nice for myself and maybe my husband too.

This morning when I woke up it had snowed and covered the  very tall old evergreen trees around our area. The snow was wet and it was just clinging and dripping from the big branches. After a snowless dark winter it quite took my breath away. And as the local kids were going to school they were joyfully scooping up the wet snow and rolling them into big balls.

Then I went on to my computer and looked through my messages and found the MSIF mailer.  They had a new edition on fatigue which was both interesting and depressing.  But the next article was very uplifting. The MSIF World MS Day film "Beautiful Day" won second prize in the Social Spot award in Germany.  If you haven't seen this short film do it now!  It helped make my day today. It could help make yours too!

Beautiful Day

And to add to your enjoyment go to my son Sean's video 1st episode of  "Sage The Mage". Then invite some children to watch it with you. I guarantee your mood will be lifted!

Sage The Mage

enjoy,  ellie

RELUCTANCE

To go with the drift of things.

To yield with a grace to reason.

And bow and accept the end.

Of a love or of a season.

Robert frost

This is one of my favorite poems and many times I refer to it.  I remember all the lines and repeat them to myself when I need them. 

I think it keeps coming back to me because in many ways people with MS live in many different seasons.  It also reminds me of my mother.  And then I think of the summer season's we spent in our cottage on the beach.

Here I am with my younger brother Bill and sister Ruth

Every year when we arrived after school closed we would rush to see what the Fall, Winter and Spring seasons had done to the landscape. Had the ocean storms and the winds drifting the sands changed it. Was the sand dune in front of our cottage higher or lower?  We played all kinds of childhood games on that dune in front of our house. And the height of the dune affected those games we played.

Then we would rush to see how  the brook that ran from the pond to the ocean had changed. When we were young the brook was very important. We learned to swim in it. When we could swim safely in the brook we could accompany an older brother or sister to the ocean to swim. But the big thing with the brook was how deep would it be as it opened onto the ocean. There were times when it's mouth opened onto the ocean with deep water.And then we could dive from the sand banks into the brook. At other times it was just a profusion of rivulets.

So depending on our age the situations could be perfect or disappointing for each of us. And if they were disappointing we would moan and complain until my mom would sympathetically point out we couldn't change what nature does. And maybe we should put our energies into getting around the situation with a little creativity.

We who have MS also have seasons in which we are at natures whim.  And the season's of MS can be very different in each of us and in how it effects our lives. This requires us to be patient and also learn to be creative to help us to go with the flow.

In my case with my current meds I usually have a best ever season which can last for a month or two . I can walk 400-500 steps, my arms and trunk are great and my thinking is good. At this time I can do so much more it's amazing.  I'm in a full remission.

Then I have another season where I can only take a step or two,  sometimes the arms and or trunk are really bad also. And I'm just plain exhausted, cognitively spent as well as really achy.  And that can last 2-3 days or a week or more. I'm in an exacerbation.

Then  a third season where basically I start to get better but it's kind of of 12 to 20 steps, and the arms and cognition get better as well as the fatigue level.  But it doesn't last if I do any activity all.  Rest will help the return of some of what I've lost but never all of it. 

And then there's the fourth season where I slowly get better up to 80 to 300 steps but then the next day I could be down to two steps. But then it's back up again . The same happens with my arms,trunk,cognition and fatigue levels. I call it my up and down season .

I have found that if I try to be as active in my great season when I'm in an up and down season I only  defeat myself. This is the season where I really can't plan ahead. And the one where I probably can have the most disappointment in my life socially.

If I am in the real down season I know I just have to rest and I'm too fatigued to do anything else anyway. However, I know it doesn't last that long and I will eventually get better.

When I'm in my middle type of season where I'm better but not all better I can plan ahead many times to go out and do things if I rest the day before and before I go out.

When you have MS you have to learn to adjust and go with the flow of the season your in. At times this can be very difficult.  Not only in the activities that you normally do but those special extras you hoped to do. It also has a big effect on your family, friends and on planning socially.

I remember talking to an old acquaintance at a preview of an art show at our local college. She knew I had MS (I was in my WC) and confided in me the concern she had of the difficulty she had in maintaining her friendship with 2 old friends who also had MS. She stated she did not want to lose their friendship but they varied so much from time to time it made it difficult to plan. One friend sometimes was walking and the next time in a wheelchair. And with her other friend it was her cognition that varied that made it just as difficult to plan . And of course there was the question when they were good when would the fatigue kick in.

I felt she wanted me to tell her how she could handle it better. I tried to but there's no special way. I suggested to try to understand and go with the flow or drift of her friends disease. Try to be there when they were really not good and let them know you understand and you'll be back when their better. Also let them know that when they're in a really good season you'll try to be there to do things with them.  She looked at me and said: " It's not easy for you and other people with MS is it? "

It's true it isn't.  I was out lately for dinner with my husband and his tennis friends. It was a good season and day for me I was walking with my walker and it was nice. And then a couple mentioned to us that they would like to go out to dinner with us some time. Of course we said we would love to. And we would.  Then of course a couple of days later I went back into a relapse. So I'm hoping they won't call until I'm out of it. Then I don't have to decline and not be able to set a definite date. And if I feel up to it but need my wheelchair they will be people who can just go with the flow of what nature's doing to me.

Have a creative and happy New Year 

ellie

I was taking my afternoon nap in the MRI machine the other day.  With all the banging , bells and whistles that you endure from that machine scanning your brain and cervical spine it can be nerve wracking.  But I had the technicians turn on nice music, put a blanket over me and  took off my shoes. Then when I was really comfy with positioning a very nice thing happened.

When the MRI first started it's banging I suddenly remembered a movie by Fellini staged in 1914  "And The Ship Sailed On".  As the movie had a lot of similar noises I was able to relive one of my favorite movie's with sound effects .
I meditated but I was soon off again in another movie "The African Queen" with Humphrey Bogart. I took Katharine Hepburn's place of course. And again the MRI noises made for perfect sound effects for a Riverboat going up the Nile. 
A little more meditation and I was on another Riverboat this time going up the Mississippi. I replaced Ava Gardener falling in love with the charming gambler played by Howard Keel. And the bang bang of MRI sounding like the paddle wheels of a River Boat continued.

By that time I was exhausted from my adventures and almost went to sleep. But as I had to stay awake so I was sure I didn't move I was relieved to see the end coming soon.

After it was finished I felt refreshed and relaxed believe it or not. I think it was conditioned by the feeling I had of being in control.

This was not my first MRI so I was well prepared. But being so relaxed that reliving those movies said a lot for my emotional state. And lets face it when you feel your losing again in MS you can feel emotional. And I know that meditating helped too just as it has in the past. For more information on MS and the MRI click to see recent video by the NMSS

In my last blog I mentioned my concern about my MS condition. And when I did see my Neurologist he felt it was time to reassess treatment. He took me off my monthly-sol-u-med as it was losing it's effectiveness and I am a Diabetic. Sol-u-med increases blood sugar levels. He also ruled out the new oral drug Gilenea also due to diabetes and other vision problems I have. Soooooooo there is always Tysurbi to consider.

As welI as the MRI I had 10 vials of blood taken for tests. I felt like I had a blood letting (or bleeding ) like they did in the old days. Next I'm scheduled for cognitive testing. Then I'll see the Psychologist to review the results. I see my Neurologist in February. And in between I see my ophthalmologist and my family physician and check my glucose levels etc.. Then in January I  have a Urodynamic Testing with my Urologist.

Happy Holiday Season ?  I think this is a time to remember.....

"It isn't what happens to us that causes us to suffer: it's what we say to ourselves about what happens."

-Pema Chodron

Be well, ellie

When someone asks me "how are you?"  I always say" I'm fine" even if I feel like an October wilted vine. Then if someone suggests that I'm looking tired I usually  say "I'M FINE" even if I feel like a November crumbling vine.  And if I'm never around that's  usually it's because" the vine" like in December has fallen apart and it's time for me to hibernate too. 

It's no fun for me to be around people when I'm very very tired due to MS fatigue. I feel that when I look tired it's harder for other people too. If I'm tired and don't look tired which I make an effort to do it's manageable. Which is good otherwise I would be a recluse.

If you have read my previous blogs you will know that I have been much better this past year since I started taking Ampyra. In August I started down hill again. As I always get better I expected the same slow but definite recovery. But one week after my monthly Sol-u-med instead of maintaining higher functioning I really went into a relapse and I was so very very tired and achy. Also I kept losing and ended up spending more time in my electric wheelchair as I could only take 2-4 steps. Of course I waited hoping for my body to recover.

But then I had had it and called my Neuro's office on a Friday afternoon to request an earlier sol-med treatment the following week. After checking with the Doctor they got back to me Monday morning and asked how I was. Of course I said "I'm fine". Then I realized and laughed and said: " No I am not fine." And as the Doc had approved my earlier sol-u-med and we set up my appointment.

I've been thinking about my saying "I'm fine" when I was requesting an earlier sol-u-med treatment. It sounds like a ridiculous statement in the circumstance. But it was my automatic response to "how are you". I think I respond that way meaning 'I'm handling this emotionally and making necessary adaptations, resting more, using assistive equipment etc. and I did feel less tired'.  But I  called my Doc because I needed more help as I felt I should be getting better.

When  I was having my sol-u-med treatment  the nurse in charge understood what I meant by  saying "I'm fine".  "It's you attitude" she said.  "Your MS symptoms are worse but your not falling apart. Your handling it.  And that's what really matters when you have a chronic progressive disease like MS."

And what also helped was knowing they would get back to me with help. I was also asked if I wanted to see my Neuro both on this last visit and the prior month as I wasn't doing as well. I declined as I always expect to get better. But they did reschedule me with an earlier visit with my Neuro Doc .

Now when I got home after my sol-u-med treatment my walking ability increased.  And it lasted for the next 2 days I could take up to 300 steps. But then I was right back down  again to 2-4 steps and arms too! That has never happened before since I started on sol-u-med but I hung in and I was better after 3-4 day's. Then again 3 days later I was back down again. I do keep a record so I will be prepared for a talk with my Neuro on my coming visit.

It's so important to be positive about what you can do and accommodate your MS in your life.  But it's also important to recognize when a negative change is occurring and to act on it. I am a Diabetic too so sol-u-med  can not be given in a large or successive doses.

I have done well on Rebif but I also did well on Betarseron than it stopped helping. This may be what's happening. They call it a Breakthru. So I may be thinking about a new immuno-modifying drug change. Or maybe something else or just a patiently wait and see.  Luckily I have a great trust and respect for my Neurologist.

I'm fine but my MS symptoms are not fine and I need help of some kind.

                                                                      ellie