The Truth About The “New” Drug For Periodic Paralysis:
It Is Not New And It Is Not For Everyone
A member of our Periodic Paralysis Network Support, Education, Advocacy Group asked me today for my personal opinion of the “new” drug approved by the FDA, which is now available to treat “Periodic Paralysis.” I myself have received no fewer than fifty Google alerts about this new “wonder drug” touted to treat Hypokalemic Periodic Paralysis and Hyperkalemic Periodic Paralysis. I have seen no articles discussing the truth about this drug in relationship to what Periodic Paralysis really is and how the paralysis and other symptoms in individuals are created with this condition. My reply is as follows addressing these issues.
I want to begin by saying we at PPN are a patient advocacy group as well as a support group and educational group. It is our desire and duty to provide information to keep each of our members informed, safe and to be the "best each person can be." For that reason I am passing along this information.
The “new” drug, now approved by the FDA to treat Periodic Paralysis, dichlorphen-amide, which will also be known as keveyis, is basically another carbonic anhydrase inhibitor (a diuretic) and it is sulfa-based. It is exactly the same as diamox (acetazolamide) so if someone has a problem with those drugs they most likely cannot take the new drug.
- 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 continue to flow into the muscles.
- Or the normal pores in the muscle cell walls just do not work correctly.
More than one half of all of the individuals with the various forms of Periodic Paralysis will not know what mutation they have due to poor, limited, narrow or biased DNA/genetic testing or because many of the mutations have yet to be discovered and research in this area has been halted. Without knowledge of which form a person has, taking these drugs is very risky.
What is a carbonic anhydrase inhibitor?
A carbonic anhydrase inhibitor is a diuretic. It works by causing “increased excretion of bicarbonate with accompanying sodium, potassium and water, resulting in an increased flow of alkaline urine. They inhibit transport of bicarbonate into the interstitium from the proximal convoluted tubule. Therefore less sodium is reabsorbed, causing greater sodium, bicarbonate and water loss in the urine.”
From the pharmaceutical company itself about dichlorphenamide/keveyis:
”Keveyis is not for everyone. Do not take Keveyis if you:
Are on a high-dose aspirin regimen
Are allergic to sulfa-based drugs
Have liver, kidney, or certain lung conditions
Are pregnant, planning to become pregnant, or nursing
Are under 18 years old”
”Your body may produce too much acid or may not be able to remove enough acid from body fluids while taking Keveyis. Your doctor will run tests on a regular basis to check for signs of acid buildup and may reduce your dose or stop your treatment with Keveyis.” (This means it can cause the development of metabolic acidosis, which nearly everyone with a form of Periodic Paralysis is prone to and develops due to the nature of Periodic Paralysis. It is a mineral metabolic disorder.)
”Keveyis may also increase the risk of falls, especially in elderly patients and patients taking high doses of Keveyis. Use caution when driving, operating machinery, or performing any other hazardous activities while taking Keveyis, as this medication may cause drowsiness.” (Most individuals with Periodic Paralysis already have issues with balance, weakness and possibly falling.)
I personally cannot take it... keveyis is sulfa based (I cannot take sulfa-based drugs) and diamox/acetazolamide nearly killed me for that reason and others.
Even for individuals who take diamox/acetazolamide and it helps them reduce episodes, most still have symptoms, and side effects; both short term and long term. These effects can be very serious and even deadly. It can cause liver disease and kidney stones as well as metabolic acidosis, very serious conditions.
In my personal opinion, I do not suggest that anyone take either of them. That being said, however, some people do fairly well but not without new problems. This is something each person must decide for himself or herself. One will not know unless he or she tries it. But like I said, some of the effects are over time and at quite a cost.
One of our members developed kidney stones, and then had to have surgery and it nearly killed her due to the anesthesia and other issues. She cannot do it again and they did not get all of the stones. She is in constant pain and will never be as well as he was before taking the drug.
I am so sorry to be so biased...but I want everyone to be safe...and I do not believe these drugs to be safe for anyone of us with Periodic Paralysis.
The truth is that dichlorphenamide, which will also be known as keveyis, is another carbonic anhydrase inhibitor, a diuretic that is a sulfa-based drug. It is the same as diamox/acetazolamide; it is nothing new or different. It is just more of the same.
But to be fair, some people do well on these medications and we are not telling anyone to stop taking them if that is the case.
I did find this in one study:
However, as previously discussed, others do not do well and/or they may develop side effects from these drugs, which can be harmful and can become life threatening. If that is the case, there is more information here for you to consider. If you have been given a prescription for one of them, you may want to read the information here before you start it, so you will know what to expect or what to look for, in order to be safe.
I have included many links to articles and studies regarding these drugs:
The following is information about dichlorphenamide (keveyis) from the pharmaceutical company, including some of the side effects:
The following is some information about diamox/acetazolamide use in individuals with Periodic Paralysis:
between liver disease and carbonic
It has been linked to liver disease ranging from acute hepatitis to severe injury with acute liver failure or prolonged jaundice.
Articles and information about issues related to acetazolamide and diamox.
Contraindications for oral diamox
More information about diamox:
Side effects for children:
"This medication should not be used in children less than 12 because it may affect normal growth."
Acetazolamide and Kidney Stones
PPN Blog Articles written about the effects of
drugs/medications/pharmaceuticals/anesthesia in Periodic Paralysis