This excitement was short-lived, however, for more than half of the individuals who are incapacitated from this cruel condition.
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.
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 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.
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:
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.....
The following is information about dichlorphenamide (keveyis) from the pharmaceutical company, including some of the side effects:
More information about diamox:
Side effects for children:
Acetazolamide and Kidney Stones