Invisible Illness Week!! Periodic Paralysis Awareness!!

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 along!!!

There is hope at:
www.periodicparalysisnetwork.com
http://livingwithperiodicparalysis.blogspot.com/
https://www.facebook.com/PeriodicParalysisNetwork
https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

Our Latest Book: "A Bill Of Rights For Periodic Paralysis Patients" the first in our A.S.E.A.Series

The Periodic Paralysis Network is excited to introduce our latest book, "A Bill Of Rights For Periodic Paralysis Patients" the first in our ***A.S.E.A.Series!!!

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 acronym A.S.E.A.

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

A Bill Of Rights For Periodic Paralysis Patients
Amazon:
https://www.amazon.com/Susan-Q-Knittle-Hunter/e/B00HVEBSSQ/ref=dp_byline_cont_pop_book_1

CreateSpace:
https://www.createspace.com/5705192

"New" Drug For Periodic Paralysis $163.80 For One 50mg Tablet!! (Revision)

"New" Drug For Periodic Paralysis $163.80 For One 50mg Tablet!!

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 the announcement.

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 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 the world.

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 long term.

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. The following is the edited version…)

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).

This excitement was short-lived, however, for more than half of the individuals who are incapacitated from this cruel condition.

 It 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.

Another 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.

During 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.

 So 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 for everyone!

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 death.

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.

• Paralysis results from potassium moving from the blood into muscle cells in an abnormal way,
• Paralysis results from problems with the way the body controls sodium and potassium levels in cells.
• Paralysis results when the channel does not open properly and potassium cannot leave the cell.
• Paralysis results when potassium shifts within normal ranges.
• The sodium channels close much too slowly and the sodium, potassium, chloride and water continues to flow into the muscles.
• Or the 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 apiece 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 expensive.

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 share.

The second representative never did get back to 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 support group.

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 KILL THEM.

I hope it is true that Sun Pharmaceuticals Industries Ltd. is going to provide this drug to those who cannot afford it, anything else is wrong.....

Links about the drug Keveyis and the pharmaceutical company:

http://www.business-standard.com/article/companies/positive-news-flow-propels-sun-pharma-115091600272_1.html

http://www.moneycontrol.com/news/buzzing-stocks/sun-pharma-uptaros-keveyis-launch-36100mn-sales-seen_3063181.html?utm_source=ref_article

http://www.businesswire.com/…/FDA-Approves-Taro%E2%80%99s-K…

Here is some more information about dichlorphenamide:

http://www.drugs.com/mtm/dichlorphenamide.html

http://www.drugs.com/drug-class/carbonic-anhydrase-inhibitors.html

 http://www.ncbi.nlm.nih.gov/pubmed/6855804

http://www.webmd.com/drugs/2/drug-8770/dichlorphenamide-oral/details/list-sideeffects

http://www.drugs.com/mtm/dichlorphenamide.html

https://books.google.com/books?id=46Yo31V0Ie0C&pg=PA411&lpg=PA411&dq=dichlorphenamide+rare+side+effects&source=bl&ots=VkhunCNmmL&sig=b2qjABrQEhW8AIq1dvBomh19mhg&hl=en&sa=X&ved=0CFMQ6AEwCWoVChMIy_bHx864xwIVxKyACh2NRACz#v=onepage&q=dichlorphenamide%20rare%20side%20effects&f=false

http://fdb.rxlist.com/drugs/drug-8770-dichlorphenamide+Oral.aspx?drugid=8770&drugname=dichlorphenamide+Oral&source=0&pagenumber=6

The following is information about dichlorphenamide (keveyis) from the pharmaceutical company, including some of the side effects:

www.businesswire.com/news/home/20150810005655/en/FDA-Approves-Taro’s-Keveyis™-dichlorphenamide-50-mg#.VdZBTvRS6ih

http://livertox.nih.gov/CarbonicAnhydraseInhibitorDiuretics.htm

Articles and information about issues related to acetazolamide and diamox. 

Contraindications for oral diamox

http://www.webmd.com/drugs/drug-6753-Diamox+oral.aspx?drugid=6753&drugname=Diamox+oral&pagenumber=5

http://www.webmd.com/drugs/drug-6753-Diamox+oral.aspx?drugid=6753&drugname=Diamox+oral&pagenumber=7

More information about diamox:

http://www.webmd.com/drugs/drug-6753-Diamox+oral.aspx?drugid=6753&drugname=Diamox+oral&dmid=1363&dmtitle=CARBONIC+ANHYDRASE+INHIBITORS%2fBRINZOLAMIDE&intrtype=DRUG&pagenumber=9

http://www.webmd.com/drugs/drug-6754-Diamox+Sequels+oral.aspx?drugid=6754&drugname=Diamox+Sequels+oral

Side effects for children:

 http://www.webmd.com/drugs/2/drug-6753/diamox-oral/details#precautions

I understand that in some cases it may be the best of two evils...a very tough decision...but you must be aware of the possibilities...

https://www.riverpharmacy.ca/faq/are-there-any-side-effects-to-acetazolamide-diamox-avva

http://www.drugs.com/sfx/diamox-side-effects.html

http://en.wikipedia.org/wiki/Acetazolamide

Acetazolamide and Kidney Stones
http://epilepsy.med.nyu.edu/treatment/medications/acetazolamide-0#sthash.5ItPjcBR.dpbs

PPN Blog Articles written about the effects of drugs/medications/pharmaceuticals/anesthesia in Periodic Paralysis

http://livingwithperiodicparalysis.blogspot.com/2013/11/pharmaceuticals-are-not-answer-for-some.html

http://livingwithperiodicparalysis.blogspot.com/2013/12/triggers-december-1-2013.html

http://livingwithperiodicparalysis.blogspot.com/2013/12/idiosyncratic-and-paradoxical-reactions.html

http://livingwithperiodicparalysis.blogspot.com/2013/12/why-people-with-some-forms-of-periodic.html

http://livingwithperiodicparalysis.blogspot.com/2014/01/permanent-muscle-weakness-in-periodic.html

http://livingwithperiodicparalysis.blogspot.com/2014/02/some-forms-of-pp-worsened-by-diamox.html

http://livingwithperiodicparalysis.blogspot.com/2014/02/rhabdomyolysis.html

http://livingwithperiodicparalysis.blogspot.com/2014/02/periodic-paralysis-and-anesthesia.html

http://livingwithperiodicparalysis.blogspot.com/2014/06/beware-of-off-label-drugs.html

Over 425 Members Now!!!

Congratulations to us all at the Periodic Paralysis Network Support, Education and Advocacy Group!!! We now have over 425 members!!!!!!!! Thank you all for your support!!!

The following are the services and features of our PPN forum:

PPN Support, Education and Advocacy Group:
https://www.facebook.com/groups/periodicparalysisnetworksupportgroup/

PPN Website: www.periodicparalysisnetwork.com

PPN Books: "Living With Periodic Paralysis: The Mystery Unraveled" and "The Periodic Paralysis

Guide And Workbook: Be The Best You Can Be Naturally"

(Found on our website http://www.periodicparalysisnetwork.com/books.htm)

PPN Blog: http://livingwithperiodicparalysis.blogspot.com/

PPN Book Discussion Group:
https://www.facebook.com/groups/periodicparalysisnetwork/

The PPN Learning Center and Workshop:
https://www.facebook.com/groups/1416848568618404/

PPN Genealogy-Genetic Discussion Group:
https://www.facebook.com/groups/580168915344191/

PPN Website Facebook Page:
https://www.facebook.com/PeriodicParalysisNetwork

PPN Author's Page:
https://www.facebook.com/SusanQKnittleHunterauthor

Email: periodicparalysisnetwork@gmail.com

Please check out our PPN Members World Map: http://www.multiplottr.com/?map_id=55083