The Truth About The “New” Drug For Periodic Paralysis: It Is Not New

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.

Periodic Paralysis is a mineral metabolic disorder (ion channelopathy). Until this “new” drug, there were NO drugs recommended or approved by the FDA for the treatment of Periodic Paralysis. The ones typically used, diamox/acetazolamide, are strictly "off-label" (made and used for other conditions). These drugs were and are unsafe for most individuals with Periodic Paralysis due to serious, sometimes harmful side effects, short term and long term. They are carbonic anhydrase inhibitors and are sulfa-based diuretics.

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.

Regarding the condition of Periodic Paralysis itself, some things need to be explained in order to understand how this drug may or may not work. 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 continue 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?”

Another serious issue is related to the lack of knowledge that many individuals with Periodic Paralysis must deal with regarding the diagnosis of the condition.

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.

Now I will discuss what this drug entails’

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.”

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

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”

“Taking Keveyis may cause a drop in the amount of potassium (an electrolyte) in your body, which can lead to heart problems. Ask your doctor if you need to eat foods that contain high amounts of potassium while taking Keveyis.” (This means it creates Hypokalemia (low potassium levels), exactly the reason most people are taking it.)

”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.)

Unfortunately, these are some of the same issues as diamox/acetazolamide!

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:

“It was determined that some individuals became who became unresponsive or worsened by acetazolamide, responded favorably to dichlorphenamide.”

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

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 hope this is helpful and if you decide to take it please do so carefully and monitor yourself very closely.

I have included many links to articles and studies regarding these drugs:

The following is information about the side effects of dichlorphenamide (keveyis):

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

The following is some information about diamox/acetazolamide use in individuals with Periodic Paralysis:

For those with Periodic Paralysis, some forms of Hypokalemic Periodic Paralysis do not respond to diamox/acetazolamide and some cause paralysis and/or worse symptoms:

 A study from 2001 relates two different types in particular but I am sure more have been discovered by now: CACNL1A3=Hypokalemic Periodic Paralysis-1 and SCN4A=

Hypokalemic Periodic Paralysis-2, each with several mutations...and of course there are the ones that have not been found yet.

When someone is diagnosed with Hypokalemic Periodic Paralysis, clinically, (based on their symptoms); one must be very careful. One form does not respond to diamox/acetazolamide, and it causes more paralysis or more serious symptoms. So, diamox/acetazolamide should not automatically be given to people clinically diagnosed with Hypokalemic Periodic Paralysis or if it is, it should be used with extreme caution.

From the study:

“In conclusion the present study demonstrates that genetic characterization of HypoPP patients is important to decipher the clinical and histopathological features of the disease, and to predict the response to therapy. We suggest that mutations in the SCN4A gene should be systematically sought in HypoPP patients suffering from paralytic attacks followed by myalgias or worsened by acetazolamide, and when muscle biopsies reveal the presence of tubular aggregates.”

http://brain.oxfordjournals.org/content/124/6/1091.full.pdf

As written above, about half of us do not have a genetic diagnosis and do not know what form of Periodic Paralysis we actually have. If we are going to take these medications, we must be very careful and closely monitor our symptoms and the side effects.

Connection between liver disease and carbonic anhydrase inhibitors:

It has been linked to liver disease ranging from acute hepatitis to severe injury with acute liver failure or prolonged jaundice.

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:

Some things to consider before putting your child on diamox/acetazolamide: Many people do fine on it but there can be some serious side effects to watch for including kidney stones, liver dysfunction, osteoporosis and metabolic acidosis. It should not to be used for children under 12 because it can affect growth. It is a sulfa drug...some people cannot take sulfa drugs.

"This medication should not be used in children less than 12 because it may affect normal growth."
 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 


Carbonic anhydrase inhibitors and the Eyes: 

Carbonic anhydrase inhibitors (CAIs) reduce eye pressure by decreasing the production of intraocular fluid.
http://www.glaucoma.org/treatment/glaucoma-medications-and-their-side-effects.php

...systemic CAIs possess undesired side effects such as numbness and tingling of extremities; metallic taste; depression; fatigue; malaise; weight loss; decreased libido; gastrointestinal irritation; metabolic acidosis; renal calculi (kidney stones) and transient myopia.
http://www.ncbi.nlm.nih.gov/pubmed/17504129

Myopia, also known as near-sightedness and short-sightedness, is a condition of the eye where the light that comes in does not directly focus on the retina but in front of it, causing the image that one sees when looking at a distant object to be out of focus, but in focus when looking at a close object.
(The myopia comes and goes causing dizziness, etc...)
https://en.wikipedia.org/wiki/Myopia

Transient myopia is a side effect of sulfa drugs:
http://onlinelibrary.wiley.com/doi/10.1111/j.1755-3768.1957.tb02240.x/abstract

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

Until later...

Beware Of "Off-Label" Drugs

Hello All,

 
I posted this on our PPN Support, Education and Advocacy Group today. I wanted to share this information once again with those who have PP or anyone who has a family member with PP. It is an important message, which I have written about several times before.

We are a patient advocacy group as well as a support group and educational group. It is our duty to provide information to keep each of you informed, safe and to be the "best you can be." For that reason I am passing along this information once again.

It has come to our attention that someone we know with PP, who is not genetically diagnosed, was placed on the known medications typically prescribed for PP sometime back. This person has had no end of serious issues and complications connected to this. So, I wanted to pass this information along once again.

Some people do well on those medications and we are not telling anyone to stop taking them if that is the case. However, 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.

Periodic Paralysis is a mineral metabolic disorder (ion channelopathy). There are NO drugs recommended/approved by the FDA for Periodic Paralysis. The ones typically used, that we know about are strictly "off-label" (made and used for other conditions).

From: https://www.rarediseasesnetwork.org/cinch/learnmore/faqs.htm

"Q: Are there drug treatments for periodic paralysis or the myotonias (PMC)?"

"There are no FDA approved treatments for periodic paralysis or the myotonias. Any medications currently prescribed for these disorders are used "off-label". "Off-label" means the drug is approved to treat another condition/disease, but was not scrutinized under the quality control protection of the FDA's clinical trials process for treatment of myotonias or periodic paralysis".....

This is the complete blog:

http://livingwithperiodicparalysis.blogspot.com/2014/06/beware-of-off-label-drugs.htmlhttp://rarediseasesnetwork.epi.usf.edu/.../learn.../faqs.htm :

"Q: Are there drug treatments for periodic paralysis or the myotonias (PMC)?"

"There are no FDA approved treatments for periodic paralysis or the myotonias. Any medications currently prescribed for these disorders are used "off-label". "Off-label" means the drug is approved to treat another condition/disease, but was not scrutinized under the quality control protection of the FDA's clinical trials process for treatment of myotonias or periodic paralysis....."

While researching this I found out some interesting information about some forms of Hypokalemic Periodic Paralysis and the use of those drugs. Some forms do not respond to them and some cause paralysis and/or worse symptoms:

 A study from 2001 relates two different types in particular but I am sure more have been discovered by now: CACNL1A3=Hypokalemic Periodic Paralysis-1 and SCN4A=Hypokalemic Periodic Paralysis-2, each with several mutations...and of course there are the ones that have not been found yet.

When someone is diagnosed with Hypokalemic Periodic Paralysis, clinically, (based on their symptoms), one must be very careful. One form either does not respond to diamox (acetazolamide), causes more paralysis or causes serious symptoms. So, diamox should not automatically be given to people clinically diagnosed with Hypokalemic Periodic Paralysis or if it is, it should be used with extreme caution.

From the article:

 “In conclusion the present study demonstrates that genetic characterization of HypoPP patients is important to decipher the clinical and histopathological features of the disease, and to predict the response to therapy. We suggest that mutations in the SCN4A gene should be systematically sought in HypoPP patients suffering from paralytic attacks followed by myalgias or worsened by acetazolamide, and when muscle biopsies reveal the presence of tubular aggregates.”

 http://brain.oxfordjournals.org/content/124/6/1091.full.pdf

About half of us do not have a genetic diagnosis and do do know what form of PP we actually have. If we are going to take these medications, we must be very careful and closely monitor our symptoms and the side effects.

For more information about this subject you may want to read in our files:

"Why we discourage discussion of diamox and acetazolamide.dot · version 1"

"Cautionary Information about Acetazolamide and Diamox for Individuals With PP.dot · version 1"

"Information on diamox.dot · version 1"

Or on the blog:

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

http://livingwithperiodicparalysis.blogspot.com/2013/12/periodic-paralysis-and-metabolic.html

Again, we are not trying to tell anyone to stop taking any medications. If they are working and there are no side effects, then there are no problems. If, however, these meds may be causing side effects or if you are trying to decide whether to take them or not, hopefully this information can help you to make an informed decision.

Hugs to you all...

Some Forms of Periodic Paralysis are Worsened by Diamox

Hello All,

While researching I found out some interesting information about Hypokalemic Periodic Paralysis. A study from 2001 relates two different types: CACNL1A3=Hypokalemic Periodic Paralysis-1 and SCN4A=Hypokalemic Periodic Paralysis-2, each with several mutations.

When someone is diagnosed with Hypokalemic Periodic Paralysis, clinically, (based on their symptoms), one must be very careful. One form either does not respond to diamox (acetazolamide), causes more paralysis or causes serious symptoms. So, diamox should not automatically be given to people clinically diagnosed with Hypokalemic Periodic Paralysis or if it is, it should be used with extreme caution.

From the article:

 “In conclusion the present study demonstrates that genetic characterization of hypoPP patients is important to decipher the clinical and histopathological features of the disease, and to predict the response to therapy. We suggest that mutations in the SCN4A gene should be systematically sought in hypoPP patients suffering from paralytic attacks followed by myalgias or worsened by acetazolamide, and when muscle biopsies reveal the presence of tubular aggregates.”

http://brain.oxfordjournals.org/content/124/6/1091.full.pdf


Until later….

Permanent Muscle Weakness in Periodic Paralysis

Hello All,

We have had quite an increase in people viewing our blog. Thank you all so much for your participation. Please feel free to make comments and ask questions. We are always working on ideas for blogs so please pass along any suggestions for subjects you would like to read about. Today's blog was suggested by a member of our support group. It took several days of research to put it together. We hope it will be informative and helpful to you.

Permanent Muscle Weakness in Periodic Paralysis

 

Many members of our Periodic Paralysis Network Support and Education Group discuss muscle weakness. It is very common to wake up in the morning unable to move, get out of bed or walk. As time passes, individuals are able to finally to move, drag themselves out of bed and walk with assistance, though they are very weak. As the day progresses, they either get a little better or remain in the weakened state. What most of them do not know or understand is, that they are in paralysis much of the night, most every night. Damage to the muscles is the result of this, thus creating gradual muscle weakness and over time Permanent Muscle Weakness (PMW) results.

I did some research on PMW related to Periodic Paralysis (PP) and discovered some interesting information. The damage done to the muscles is written about much less often than the episodes of partial or full paralysis in articles or studies about Periodic Paralysis. The information available, however, indicates that PMW is seen in all forms of PP, Hypokalemic Periodic Paralysis, Hyperkalemic Periodic Paralysis or Andersen-Tawil Syndrome. Progressive muscle damage is also seen in all forms and it is irreparable. It cannot be reversed http://mda.org/disease/inherited-and-endocrine-myopathies/periodic-paralysesirreperable.

In one study it was determined that some individuals who were not helped by or who were worsened by acetazolamide (the main drug used), responded well to dichlorophenamide another drug. 

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

Acetazolamide is a drug that must be used with extreme caution. It can cause kidney stones, metabolic acidosis, low potassium levels, affects growth in children and has caused death.  The most important issue is that it can actually cause paralysis thus creating more permanent muscle weakness!
http://www.webmd.com/drugs/drug-6755-acetazolamide+oral.aspx?drugid=6755&drugname=acetazolamide+oral&pagenumber=6http://link.springer.com/article/10.1007%2FBF00311396#page-1

In another study it was concluded that Hypokalemic Periodic Paralysis is a myopathy (muscle disease, however, it is actually a mineral metabolic disorder, which affects the muscles) with permanent muscle weakness of late onset in all the patients. This study though older and only a few participants were used, indicated that most everyone with any form of Periodic Paralysis would develop permanent muscle weakness as they age.

http://www.ncbi.nlm.nih.gov/pubmed/2276049http://www.ncbi.nlm.nih.gov/pubmed/2276049

In the last study, there is correlation between PMW and abnormal muscle biopsies. This means that a muscle biopsy, completed for people with PP, may show abnormalities and damage in the muscle fibers namely changes in size and shape, vacuoles, splitting of the fibers, tubular aggreagates, increased glycogen (fat).

http://link.springer.com/article/10.1007%2FBF00311396#page-1

This overlooked subject is extremely important and needs to be addressed. Each paralytic episode causes more muscle damage so it is necessary to do everything possible to stop the episodes.

We know that avoiding the things that cause the episodes is the most important issue. So it is important to know what a person’s triggers are and avoid them. Other treatment may include following a pH balanced diet, using supplements, avoiding exerting oneself and more. Some individuals may use drugs, but they must be used with caution and as discussed earlier.

So the conclusions seem to be that all individuals with Periodic Paralysis will have Permanent Muscle Weakness. We can also conclude that acetazolamide (diamox) seems to make it worse...thus this could be a problem for younger people with PP who take acetazolamide and begin to develop PMW (as well as kidney stones and metabolic acidosis and growth issues with children), but other medications, namely dichlorophenamide, may help. There is a correlation between your PMW and abnormalities in your muscle (muscle fibers). In other words, it is likely that if you had a biopsy, abnormalities will show up.

That being said, the only drug known to possibly improve the symptoms of PP including possibly lessening the chances of PMW, dichlorophenamide which was widely accessible previously, is not registered anymore and only available for trials bring run by researchers.

http://onlinelibrary.wiley.com/doi/10.1002/mus.880060303/abstract

The following is the results of a study from 2008:

“Although the carbonic anhydrase inhibitors have been used in the treatment of the primary periodic paralyses (PPs), their efficacy has not been demonstrated in double-blind, placebo-controlled trials. Therefore, we tested the efficacy of dichlorphenamide (DCP; Daranide), a potent carbonic anhydrase inhibitor, in the treatment of episodic weakness in the primary PPs. We performed two multicenter, randomized, double-blind, placebo-controlled crossover trials, one involving 42 subjects with hypokalemic periodic paralysis (HypoPP) and the other involving 31 subjects with potassium-sensitive periodic paralysis (PSPP). In each trial, two 8-week treatment periods were separated by an active washout period of at least 9 weeks. The primary outcome variable in the HypoPP trial was the occurrence of an intolerable increase in attack severity or frequency (end point). The primary outcome variable in the PSPP trial was the number of attacks per week. In the HypoPP trial, there were 13 subjects who exhibited a preference (in terms of the end point) for either DCP or placebo, and 11 of these preferred DCP. In the PSPP trial, DCP significantly reduced attack rates relative to placebo. DCP also significantly reduced attack rates relative to placebo in the HypoPP subjects. We conclude that DCP is effective in the prevention of episodic weakness in both HypoPP and PSPP. 2008”

https://www.medify.com/insights/article/10632100/randomized-trials-of-dichlorphenamide-in-the-periodic-paralyses-working-group-on-periodic-paralysis


It seems odd to me that a drug, which might actually help someone who has Periodic Paralysis is now unavailable to them or is only available for a few people taking part in PP studies and research (as soon as the study is completed the drug is stopped) or those who have enough money to get it through questionable channels. So for some people with PP they are in a "Catch 22" with acetazolamide. They can take acetazolamide and increase the chances of developing PMW or of an increase in the progression of muscle weakness, kidney stones, metabolic acidosis and more as well as growth issues for children. However, they cannot get or take a drug, dichlorophenamide, which may actually help them.

I personally prefer and must use natural methods. I am unable to tolerate most drugs, including acetazolamide.

The following links provide more information for those interested in researching dichlorophenamide

http://onlinelibrary.wiley.com/doi/10.1002/1531-8249%28200001%2947:1%3C46::AID-ANA9%3E3.0.CO;2-H/abstract;jsessionid=1D6E6DF386359CD033D6FF4C39336422.f04t02

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

http://www.drugbank.ca/drugs/DB01144

http://quest.mda.org/news/dichlorphenamide-being-tested-periodic-paralysis

tests now going on

http://www.webmd.com/drugs/drug-8770-Dichlorphenamide+Oral.aspx?drugid=8770&drugname=Dichlorphenamide+Oral&pagenumber=6

rare side effects metabolic acidosis

http://medical-dictionary.thefreedictionary.com/dichlorphenamide

prohibits use

http://www.gpo.gov/fdsys/pkg/FR-2007-08-06/pdf/E7-15230.pdf

not withdrawn for safety reasons

https://www.google.com/search?q=dichlorophenamide&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a#q=dichlorphenamide+why+discontinued+in+the+USA%3F&rls=org.mozilla:en-US:official

https://www.medify.com/insights/article/10632100/randomized-trials-of-dichlorphenamide-in-the-periodic-paralyses-working-group-on-periodic-paralysis

http://www.scribd.com/doc/2768678/Notice-Human-drugsDrug-products-withdrawn-from-sale-for-reasons-other-than-safety-or-effectiveness8212-Daranide-dichlorphenamide-tablets-50-m Wall Street Journal

http://medlibrary.org/lib/rx/meds/daranide/page/2/

http://www.onlinecanadianpharmacy.com/section/productgroup.aspx?DrugName=Daranide&Generic=no buy in Cananda

http://www.drugs.com/answers/where-can-i-buy-daranide-408510.html

https://www.federalregister.gov/articles/2007/08/06/E7-15230/determination-that-daranide-dichlorphenamide-tablets-50-milligrams-were-not-withdrawn-from-sale-for

http://www.muscular-dystrophy.org/research/clinical_trials/244/periodic%252Bparalysis (the studies)

 Until later...

Why We Should NOT TAKE DRUGS: Idiosyncratic and Paradoxical Reactions To Drugs

Good Morning All!

Here on the Olympic Peninsula, we woke up to a winter wonderland!! It does not happen here very often, so it is a treat, especially a few days before Christmas. I think we can be assured of a White Christmas now!!! It is still snowing as I write, so I do not know how much we will get but we have a good two inches right now.


Yesterday, after my really good day on Wednesday, I had a bad afternoon and evening. Calvin made us a pot of beef vegetable soup!! Over the past five years, he has learned to cook as I have given him directions from my recliner. He has now graduated to creating his own dishes and even bakes cookies for us (sugar-free and gluten-free).


He keeps busy during the winter months with his own writing (about ready to publish his new book) and working on the finish work of our renovated home. He has done a beautiful job. We are very comfortable.


Today I will write about the strange effects resulting from medications to people with various forms of Periodic Paralysis.

 

Idiosyncratic Reaction To Drugs

 

 

 

The two most common issues with drugs or pharmaceuticals for individuals with Periodic Paralysis (and others) are a paradoxical reaction and an idiosyncratic reaction. These are both serious effects. If one has a paradoxical reaction to a medication it means that the opposite of what is supposed to happen will occur. For instance, if someone takes a sleeping pill and then stays awake all night, it is known as a paradoxical effect. This can be just an inconvenience or very serious depending on the medical issue and the reaction. If someone who is already experiencing high blood pressure, is prescribed a drug to lower blood pressure, but it increases the blood pressure, this can cause a stroke, other serious effects or even death.


If an individual develops tremors, metabolic acidosis and paralysis from taking an antibiotic; these would be considered as idiosyncratic effects; reactions or side effects, which would be totally unpredicted, unexpected and never seen before. These effects would not be listed as possible rare side effects. This is a serious problem because these idiosyncratic effects, also known as “type B reaction” can be harmful by causing damage or even death. The amount ingested has no bearing on it. The reactions may occur from the smallest amount possible after one dose and the reactions may occur right away or after a little passage of time, even after a few weeks or chronically after a period of time.


It is believed that the type B reaction is an immune-mediated toxicity. This means an idiosyncratic reaction is an immune system response, which causes the drug to be toxic or poisonous to the individual who ingested it, inhaled it or absorbed it through the skin and causes cellular damage. Experience and research indicate that very few treatments exist. One must stop taking the drug, repair the damage if possible and provide life support if needed.


It should be noted that there may be no reaction the first time but may happen after the second time it is prescribed or at any time, even if taken for many years with no problems. The unexpected reaction may also occur after discontinuing the drug many weeks previously. The reaction or side effect may not be the same each time the drug is introduced.


Research indicates idiosyncratic effects are related to metabolic, mitochondrial and inflammatory dysfunction rather than the immune system and that there might be a genetic link in many cases.


Why is this an issue for individuals with Periodic Paralysis? Periodic Paralysis is a mineral metabolic disorder. Paradoxical reactions and idiosyncratic reactions are related to metabolic dysfunction. Strange, odd and out-of-the-ordinary side effects and drugs creating the opposite effects are common characteristics of individuals with all forms of Periodic Paralysis, especially the form known as Andersen-Tawil Syndrome.


Many individuals with Periodic Paralysis have serious side effects from the drugs they are prescribed. Without knowing this and without a diagnosis, doctors will prescribe drugs to treat symptoms that appear to be neurological or for other issues. The patient will use the pharmaceuticals and develop new symptoms, over time. These symptoms begin to look like something else for which new medications are prescribed, and the cycle continues. Or if there is no diagnosis and a person is suspected of having a conversion disorder, once everything else is ruled out, psychotropic medications may be prescribed. These medications can become out of control and it is not uncommon to be on 5 or 10 or more drugs at one time. They are toxic to the body and are causing damage. Most of them are also triggers for the periods of paralysis, and each paralytic episode causes more damage to the body.

 

I am a victim of this cycle. I was misdiagnosed several times, given medications for which created new symptoms for which more drugs were prescribed. I was experiencing ataxia, dyskenesia, tremors, heart issues, blood pressure issues, anxiety, pain, passing out, muscle weakness and more and of course episodes of partial and full-body paralysis. At one point I was on 15 different drugs, of which I actually needed not one of them.


I finally had a huge seizure or stroke-like episode. I ended up in the hospital. I was given more medications causing hallucinations, among other things, and which left me in and out of consciousness. I was permanently left with muscle weakness, breathing issues and exercise intolerance. I could not take care of my own personal needs like toileting, bathing, dressing or eating. It took many months to be able to have strength enough to stand by myself and I had to learn to walk again with the aid of a walker and physical therapy. I have never recovered to the point I was before that episode. I now use a power wheelchair for any more than a few steps, am on oxygen therapy 24 hours a day, must refrain from any exercise or exertion, am stuck in a recliner all day and much more.


With a proper diagnosis and without all of the unnecessary drugs, which caused paradoxical and idiosyncratic reactions, I would be much better in all ways. The following is a partial list of some of the drugs I took and some of the obvious effects of each.

Acetazolamide/Diamox/Keveyis: Metabolic acidosis, unconsciousness, paralysis, and more
Metformin: Tremors and ataxia
Albuterol: Tremor, ataxia and paralysis episode
Diltiazem: Ataxia
Seroquel: Seizures, paralysis episodes
Flouxitine: Seizures, paralysis episodes
Cipro: Partial paralysis of legs and painful tight calves
Macrodantin: Partial paralysis of legs and painful tight calves
Septra: Ataxia, paralysis, metabolic acidosis
Ranitidine: Ataxia
Detrol LA: Ataxia
Reglan: Dyskenesia
Forteo: Ataxia
Atenolol: Low blood pressure, passing out
Psychotropic medications: Seizures
Narcotics: Unconsciousness, nausea due to
Pain Killers: Low blood pressure, passing out

(This does not include all of the drugs that cause long QT heartbeat
and any or all of them trigger episodes of full-body paralysis.)
 In conclusion, a paradoxical or idiosyncratic reaction is an immune system response to drugs due to genetic predisposition and metabolic dysfunction in individuals with Periodic Paralysis, a mineral metabolic disorder. This includes the medications specifically prescribed to treat Periodic Paralysis ( Acetazolamide/Diamox/Keveyis).
Precautions must be taken to avoid these effects. Stop the drugs (with the help of a doctor, very carefully) or do not start them at all. There are natural ways to control many of the symptoms of Periodic Paralysis, namely avoiding triggers and other common sense and natural methods.

http://en.wikipedia.org/wiki/Idiosyncratic_drug_reaction
http://en.wikipedia.org/wiki/Toxicology
http://phm.utoronto.ca/~uetrecht/Jack_lab/Welcome.html
http://www.ncbi.nlm.nih.gov/pubmed/20020273
http://www.aasld.org/dili/Documents/2012/2A-4_UetrechtN.pdf

Added 9-24-2020:
What are the Periodic Paralysis Triggers? AVOID AT ALL COST

https://periodicparalysisnetworkinc.com/wp-content/uploads/2020/08/What-Are-The-Periodic-Paralysis-Triggers-AVOID-AT-ALL-COST.pdf

Until later…

Periodic Paralysis and Metabolic Acidosis

Hello All,

 

I had a fairly good day yesterday as long as I did not get up. Once up on my feet, I got dizzy and weak. Otherwise, I stayed busy with writing, editing, analysis of survey data and research. I also took some time to make a grocery list in case I was well enough today to go shopping with Calvin.

 

Since I am feeling fairly well this morning, I think I will try to venture out with Calvin. We will go to our organic market to purchase our vegetables and other unprocessed foods for our pH balanced diet.

I have chosen, today, to write about the reason I follow a pH balanced diet; the issue with metabolic acidosis.

 
Periodic Paralysis and Metabolic Acidosis 

 

 

  (http://medipptx.blogspot.com/2010/09/metabolic-acidosis_1754.html)

Periodic Paralysis is a 4^th class mineral metabolic disorder. People with mineral metabolic disorders tend to have chronic metabolic acidosis. Metabolic acidosis is an excess of acidity in the fluids of the body. In chronic metabolic acidosis, osteoporosis and kidney stones may develop.

 

Metabolic acidosis is a pH imbalance (the balance between the acid and alkaline), in which the body accumulates an excess of acid in the body fluids and does not have enough bicarbonate to neutralize the effects of the acid effectively. An individual can develop metabolic acidosis, if the carbon dioxide levels are allowed to rise and remain in the body.

 

We know that metabolic acidosis affects the heart and breathing. It results in potassium shifting out of the cells and into the bloodstream creating hyperkalemia, too much potassium. The combination of metabolic acidosis and hyperkalemia is a serious condition and can be life threatening leading to shock and death. Metabolic acidosis may also occur in low potassium levels.

 

Some of the more common symptoms of metabolic acidosis are muscle weakness, bone and muscle pain, headache, chest pain, tachycardia, heart palpitations, abdominal pain, rapid breathing, shortness of breath, confusion, drowsiness, a lack of energy and paralysis for persons with Periodic Paralysis. If metabolic acidosis becomes severe it can lead to shock (a lack of an appropriate flow of blood in the body) or death. However, the symptoms of metabolic acidosis are sometimes not very obvious or specific, depending on the cause. It should be noted that in some individual’s metabolic acidosis could be mild and ongoing (chronic).

In chronic metabolic acidosis an individual’s bones and kidneys are affected. When potassium shifts in the body, calcium carbonate from the bone is released. This causes a loss of the bone crystals leading to osteoporosis. When the kidneys are affected, this can be seen by the formation of kidney stones.  

Normally our pH level should be 70% alkaline and 30% acidic. If we do not eat a balanced diet and eat more acidic foods, we are too acidic and we can develop metabolic acidosis a serious condition. Through research we found that those of us with PP may have chronic levels of metabolic acidosis. So a balanced pH diet is a very good plan for some of us.

The normal diet in the U.S. is very acidic with meat, fats, dairy, sugar, white flour, and with all the processed foods we eat. This makes many normal people acidic and they become ill with any number of symptoms and illnesses. So imagine what it does to us with Periodic Paralysis?  We develop, metabolic acidosis, which we are already prone to developing.

 One of the major drugs used for treating Periodic Paralysis is acetazolamide also sold under the name of diamox and keveyis.  It is a carbonic anhydrase inhibitor, which is a diuretic. It removes water through the kidneys. Interestingly, it is used to treat mild metabolic acidosis, however, it actually leads to more metabolic acidosis by speeding up the process. Many individuals taking this drug to treat their symptoms of Periodic Paralysis are unknowingly making themselves worse and causing more damage to their bodies. It also lowers potassium. Many people are also unaware that it is a sulpha-based drug and should not be taken if an allergy exists to sulfa drugs.

 
If one already has Periodic Paralysis and has chronic metabolic acidosis he or she can develop kidney stones and osteoporosis over time. If one already has Periodic Paralysis and has chronic metabolic acidosis and takes diamox, he or she can become more acidic and can acquire full-blown metabolic acidosis which causes more damage and kidney stones and accelerates osteoporosis, more illness, more paralysis from the stress on the body and lowering of potassium and may even cause death. (Please research this well as you make your choices about the drugs you are using. Many, many of us choose not to use them, they cause us serious side effects in the short and long term.)

So it is especially important for individuals with Periodic Paralysis to maintain that 70/30 balance and it can be done with a pH diet. We may eat some of the foods, which are more acidic, just remember to keep the 70/30 balance to avoid or lower metabolic acidosis.

http://www.lumrix.net/medical/diseases/metabolic_disorders.html
http://www.maimonidesmed.org/Main/AdamMultimediaEncyclopedia/Mineral-metabolism-disorders-1007271.aspx
http://en.wikipedia.org/wiki/Metabolism#Minerals_and_cofactors
http://www.encognitive.com/node/1181
https://sites.google.com/site/metaboliccare/metabolicdisorder
http://the-medical-dictionary.com/metabolic_disorder.htm
https://ufhealth.org/mineral-metabolism-disorders

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

http://www.drugs.com/cdi/acetazolamide.html
https://www.riverpharmacy.ca/faq/are-there-any-side-effects-to-acetazolamide-diamox-avva

http://www.medicinenet.com/acetazolamide-oral/page3.htm

http://www.rxlist.com/diamox-sequels-drug.htm

Until later…