This blog is designed to educate the world about Periodic Paralysis a rare, inherited, hard to diagnose, debilitating and cruel metabolic disorder. I have a variant of this condition and my life is filled with constant challenges as I attempt to manage my symptoms to stay alive. My husband and I are co-founders of the Periodic Paralysis Network, Inc. This blog is an extension of our educational and support network at www.periodicparalysisnetwork.com .
This is Invisible Illness Week so we at the Periodic Paralysis
Network created a poster to share with everyone about Periodic
Paralysis, which for most of us is an invisible illness...Please pass it
The Periodic Paralysis Network is excited to introduce our latest
book, "A Bill Of Rights For Periodic Paralysis Patients" the first in
It is an easy read and a great educational tool for anyone who wants to
know more about, or better understand, the rare mineral metabolic
disorder, Periodic Paralysis.
The members of the ‘Periodic Paralysis
Network Support, Education and Advocacy Group’ inspired "A Bill of
Rights For Periodic Paralysis Patients." The members, now over 425
worldwide, share daily their heart-breaking and frustrating experiences.
They relate frightening symptoms, years of painful and costly testing, a
lack of being believed, abuse by
doctors, denial of diagnoses and denial of proper treatment. These
courageous and very ill people are under-recognized, under-diagnosed,
misdiagnosed, misunderstood and mistreated by the medical professionals
with whom they must deal and depend upon for their care. Their general
rights; diagnostic rights; the right to proper treatment in the
laboratory, by doctors and in the ER; the right to research and
awareness and issues related to insurance rights have been and are being
violated in many cases. This needs to stop.
For these reasons a bill of rights for individuals with Periodic
Paralysis has been created, by the PPN. The information used to outline,
describe and explain these concepts and rights are referenced and can
be found at the Periodic Paralysis Network, Inc. Website, Blog Articles,
Discussion Groups and Books.
***This series, called "The
Periodic Paralysis Network A.S.E.A. Series," is designed to bring
awareness of Periodic Paralysis to the world; to provide support to
individuals with all forms of Periodic Paralysis and their family
members; to educate individuals about all aspects of Periodic Paralysis
to include medical professionals and to provide advocacy for those with
the condition and their family members and caregivers. The PPN was
created and exists to provide Awareness, Support, Education and Advocacy
to and for all individuals with Periodic Paralysis, their family
members and caregivers as well as all medical professionals, thus the
Table of Contents
About A.S.E.A. vi Preface viii Acknowledgements ix Introduction x What is a Bill of Rights? 13 The General Rights 29 The Diagnosis of Periodic Paralysis 41 Treatment in the Laboratory 55 Treatment by Doctors 63 Treatment in the ER and Hospital 75 Research and Awareness 99 Insurance 105 Conclusion 109 Periodic Paralysis Forum 110 About the Authors 111
"New" Drug For Periodic Paralysis $163.80 For One
I have written two blog articles in recent weeks about the
drug Dichlorphenamide, also known as Keveyis, made by Sun Pharmaceuticals
Industries Ltd (Taro Pharmaceutical). The first article was to announce a new drug, which had been
approved by the FDA to treat Periodic Paralysis (PP). The second article was
written after the facts were discovered about the new drug. Today, I find it
necessary to write a third article since the cost for the drug has been
announced and the stock market is showing gains for Sun Pharmaceuticals after
I want to explain a few things before I continue, however. The Periodic Paralysis Network (PPN) was
created to help individuals who have been diagnosed with Periodic Paralysis or
those who are not yet diagnosed but have symptoms of Periodic Paralysis. Due to
the nature of a mineral metabolic disorder, most drugs are harmful and even
deadly for those with the varying forms of PP. The major way that the PPN has
chosen to help others is to share natural methods to manage the symptoms and
paralytic episodes. We have grown to be an organization to provide support,
education, and advocacy to our members and attempt to bring awareness of PP to
We are members of an international medical advocacy
association working to provide safe and appropriate medical care, so as an
advocacy group, we feel it is our duty to attempt to keep our members as safe
as possible and to advocate for their medical rights. At least fifty percent of
our members cannot take the“new” drug
due to terrible short term and long term side effects. Due to the reasons above
and for liability reasons, we have chosen to refrain from discussing drugs in
our support group and opt to discuss the natural and common sense methods.
When the new drug announcement was disclosed, we wanted to
be fair and hoped for the possibility of something “new” and different, so we
were happy to discuss it. However, we found out it was the same as the other
drug already being used, which causes harm to a portion of our members. At that
time, we felt in necessary to warn our members of the facts…a mistake with
drugs can kill some of us…so it is a serious issue. In both articles, to be
fair, we mentioned that some of us do well on it and we are happy for those
members, but regardless of that, nearly one half of those individuals who do
get some relief from it, continue to develop side effects, both short term and
When the outrageous cost was announced, as well as the
benefit this would have for the Pharmaceutical Company involved, and because we
are advocates for ALL individuals with Periodic Paralysis and the members of
our forum, we felt it necessary to write about this. I, myself, cannot take it,
so the cost does not directly affect me, but some individuals with Periodic
Paralysis can and do want to take it and some rightfully, want to try it. We
support these individuals but warn them to use caution.
Information has come to me today that indicates the pharmaceutical company is now saying that the drug will be available for
everyone, even if he or she cannot afford it. I hope that is the case, we will
see in the future if that is true or not.
For those who wish to take the drug but cannot afford it;
and for those who need to know or would like to know about the individuals for
which the drug was created and for the pharmaceutical company that has seen fit
to charge $163.80 for one pill that could change the lives of some very ill
individuals, if they could afford it; I have written the following:
(I have edited my original article. This following is the
This drug has been touted as a new drug and the first drug
approved by the US Food and Drug Administration (FDA) to treat a group of
metabolic disorders known as the Periodic Paralyses. Until now, off-label drugs
(drugs used for other purposes) had been used with some success for some of the
individuals with this disabling and serious medical condition.
For the community of people who suffer
the horrible effects of this disorder, also known as an ion channelopathy, this
was big news…a new drug AND it is approved by the FDA!
This brought rejoicing and hope to the more than (under-estimated) 5,000
individuals in the United States with various forms of Periodic Paralysis (PP).
excitement was short-lived, however, for more than half of the individuals who
are incapacitated from this cruel condition.
turns out that Keveyis, also known as Dichlorphenamide, is not new at all. It
is the same type of drug as the off-label drugs being used by some individuals.
Some are having great success, but not without short and long term side
effects. Dichlorphenamide is a carbonic anhydrase inhibitors (a diuretic) and
it is sulfa-based. Some individuals with other forms of PP cannot use it
without serious side effects. Some have nearly died from it and deaths have
been reported from its use.
issue is, it is not new to Periodic Paralysis and has been used previously by
patients with Periodic Paralysis for many years at a cost of about the same
amount as a bottle of aspirin, but was pulled from the market while studies
were done over several decades. Before that time some people had success with
it, but others had terrible side effects from it.
those years, many people with PP were involved in studies using the drug. Many
of those individuals did well, but when the study was completed, the drug was
no longer given to the patients. They had to go without any treatment or take
the off-label drug that was not as effective.
we have a “new” drug
that is not “new” at all,
which was taken away from individuals who really needed it and were doing well
with it. Then we had twenty-three years of studies being done at which time
people with PP were using it and feeling some relief from their horrible
symptoms and episodes of paralysis and gradual permanent muscle weakness. After
that, the drug was taken away and the patients were left to fend for
themselves, with the promise that sometime in the future, the drug would be available
The drug is touted as being a treatment for “periodic
paralysis”…to mean all forms…this
is misleading. There are many forms of Periodic Paralysis. This drug can only
be used for a few forms, or genetic mutations of this condition. To the
remainder of those with the “wrong”
mutations and who cannot take it, there are serious side effects and possible
There are several forms of Periodic Paralysis and many genetic mutations for
each form. The different types cause the paralytic episodes, muscle weakness
and other symptoms in varying ways. Potassium shifts in the body abnormally
either in low, high or within normal ranges caused by many triggers. This
happens as follows depending on the various forms.
results from potassium moving
from the blood into muscle cells in an abnormal way,
results from problems with the
way the body controls sodium and potassium levels in cells.
results when the channel does not open properly and potassium cannot leave
Paralysis results when potassium
shifts within normal ranges.
channels close much too slowly and the sodium, potassium, chloride and
water continue to flow into the muscles.
normal pores in the muscle cell walls just do not work correctly.
Knowing this information, my question is
as follows, “How can one drug possibly treat and
correct all of these possible malfunctions?”
These realizations were very disappointing to many of us. We were hoping for
more research and for possibly some new forms of treatment…not drugs, because
most of us cannot take any form of drugs.
Then came the day with the announcement...The “new” drug is now available for
use in the United States of America. The cost??????$163.80 for one
50mg tablet!!! Most individuals need more than that a day, so for two
tablets a day it is estimated that the cost will be $120,000.00 per year, for
each person!!! Imagine a family with several people with the same condition?
After all, it is an inherited disorder. Most insurance companies will not pay
for this drug.
Most people who suffer from Periodic Paralysis are disabled and live on Social
Security. This drug will never be available for them to use.
Many of those who wanted to try it were going to take a risk just to see if it
might help, knowing the probable side effects. But now, this opportunity has
been taken from her.
In the past year, I was contacted by three pharmaceutical representatives
seeking information about and from individuals with Periodic Paralysis. I was
told there was a “new” drug for Periodic Paralysis that was about to be
released. They wanted the names of the members of our PPN Support Group so they
could be interviewed about this 'up and coming' “new” drug.
I told each one that I could not give out the names of my members and that I
wanted to know more about the drug before revealing such information.
I did not want to give false hope to our members. I know that most drugs
are harmful to us. I did an interview myself with the first team. I personally
explained the facts to them about the issues with the use of drugs with a
mineral metabolic disorder. I explained that most of us needed other things to
help manage our symptoms.
We need potassium readers that cost $350.00 a piece and are not paid for by insurance.
We need other medical devices to monitor our vital signs when in paralysis
because during episodes of muscle weakness or paralysis, which may last many
hours, there may be serious heart arrhythmia, fluctuating heart rate and blood
pressure, choking, breathing issues and low oxygen levels. A patient may stop
breathing or go into coronary or respiratory arrest or both and therefore, the
patient must never be left alone during an episode and all vitals must be
constantly monitored. I described the diet we must follow and how we need to
avoid triggers, which can trigger the paralytic episodes. These include but are
not limited to: most drugs including antibiotics, food fillers and dyes,
pesticides, sugar, salt, gluten, stress, anesthesia, IV’s, stress (good and
bad), exercise, exertion, carbohydrates and much more. I explained that, for
those reasons, we need a special, natural and organic diet, which is very
I continued to explain that we have to pay for these things out of our own
pockets because insurance does not cover them. I explained that if they really
wanted to help us they could research ways to help us to get what we need and
for insurance to pay for them. I discussed how most doctors, even the
“specialists” know little about the condition. We need a way for all medical
professionals to be trained properly about Periodic Paralysis for better
recognition, diagnosis and treatment in a timely manner (my own diagnosis took
over fifty years!) If they want to really help us, these are the things we
need…not another drug we cannot take.
This team never did tell me about the drug or its name, so I did not pass along
the information to the members of our Support Group since I had nothing to
The second representative never did get
back with me after I asked him about the drug. He said he was not allowed to
tell me about it, yet he wanted the list of names of all of the members of our
The third representative approached me in a different manner and caught me off
guard. She praised my writings on our blog and was terribly “moved” when she
read my story. She wanted me to do an interview about the new drug and I told
her all of the same information. She was allowed to tell me that at the end of
the interview that the “new” drug was actually another carbonic anhydrase
inhibitors and knew that it could not help me, or many of the others, from the
information I had given to her. She seemed sincere and she assured me that they
wanted to gain more information to know of other ways to help those of us who
cannot take the “new” drug or any drug. I thought and hoped she was sincere. I
now doubt it.
With a heavy heart, I would like to say
to her and the pharmaceutical company, which she represents, for those
individuals with Periodic Paralysis, who either want to take the drug, or at
least try it, and for those of us who cannot take it:
ARE YOU KIDDING!!!!!!!! $163.80 FOR
A 50mg TABLET!!!! MOST PEOPLE WILL NEED AT LEAST TWO PILLS PER DAY!!! THAT IS
$120,000.00 FOR ONE YEAR FOR ONE PATIENT!!!! NO ONE WHO HAS PERIODIC PARALYSIS
CAN AFFORD THAT AND IT IS UNLIKELY THAT INSURANCE WOULD PAY FOR
IT!!!!!!!!!!!!!!! THIS IS UNCONSCIONABLE!!! THE PHARMACEUTICAL COMPANIES SHOULD
NOT BE ABLE TO DO THIS TO THE SICKEST PEOPLE ON EARTH!!! WE ARE ALREADY
DOWN!!!!! JUST KICK US SOME MORE!!!!!!!!
IF YOU REALLY WANT TO HELP US CREATE A DRUG OR A TREATMENT THAT CAN HELP ALL OF
US, AND UNTIL THAT TIME BUY EACH FAMILY A POTASSIUM READER AND /OR AND OR AN
ISTAT, AS WELL AS, ALL OF THE MEDICAL EQUIPMENT WE NEED FOR MONITORING DURING
AN EPISODE, PAY FOR THE SPECIAL DIET WE MUST EAT, PROVIDE US WITH THE ADAPTIVE
EQUIPMENT WE NEED, PAY FOR THE OXYGEN WE MUST USE WHEN OUR BREATHING BECOMES
TOO SHALLOW DURING PARALYTIC EPISODES, PAY OUR MEDICAL BILLS AND COPAYS, AND
MORE…YOU CAN ALSO PAY FOR TRAINING ALL OF THE DOCTORS AND MEDICAL PROFESSIONALS
WHO DO NOT KNOW OR UNDERSTAND PERIODIC PARALYSIS.
ACCORDING TO THE STOCK MARKET REPORTS WE ARE RECEIVING, ABOUT SUN
PHARMACEUTICAL INDUSTRIES LTD, THE INTRODUCTION OF THE NEW DRUG KEVEYIS AND THE
AMOUNT THAT EACH PILL WILL COST HAS RAISED THE VALUE OF THE STOCK/COMPANY ON
THE STOCK MARKET! THE HEADLINE FROM AN ARTICE TODAY SAYS:
“POSITIVE NEWS FLOW PROPELS SUN PHARM’
THAT MEANS THE CEO’S AND STOCK HOLDERS WILL HAVE SOME EXTRA MONEY THAT THEY CAN
DONATE TO THE EXTREMELY ILL AND DISABLED INDIVIDUALS WITH PERIODIC PARALYSIS.
AFTER ALL, THEY WILL BE MAKING IT OFF OF THEIR BACKS; THE BACKS OF SOME OF THE
MOST ILL AND MISTREATED INDIVIDUALS ON THIS PLANET WITH A DRUG THAT MAKES MANY
OF THEM WORSE, HAS HORRIBLE SHORT TERM AND LONG TERM SIDE EFFECTS AND CAN EVEN
I hope it is true that Sun Pharmaceuticals
Industries Ltd. is going to provide this drug to those who cannot afford, anything else is wrong.....
Links about the drug Keveyis and the