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jueves, 12 de marzo de 2015

Impressions after 50 days taking valproic acid.

The following results no longer measurements and assessments on an individual and therefore can neither intended to replace medical findings and conclusions.

My experience with valproic acid has continued to evolve positively.

These are the effects that I noticed after 50 days taking valproic acid, the first 7 days taking 250mg (Dicorate ER) per day, then another 14 days taking 500mg (Dicorate ER) a day, 7 days with 250mg (Dicorate ER) and the remaining days with 500mg (Depakote).

Important:
  • During seven days I have had to reduce the dose to 250mg pills because I had not enough until it was new package with valproic acid.
  • After 23 days of treatment now taking Depakote ER instead of Dicorate that is the drug that has reached me in the new order.


After 50 days taking valproic acid results in the tests have continued to improve.

Breathing

In plain
Before. 
  • A low who was suffering from a strong fatigue. Respiratory distress before treatment was very pronounced.
50 days. 
  • No fatigue when walking, absolutely normal.
  • You can walk and talk at the same time without any symptoms of fatigue.
  • You can upload ramps average gradient of 100 meters without appreciating symptoms of pain and stiffness.
  • You can upload small flights of stairs on the street or subway without fatigue, or if the leg is longer than normal fatigue will light (not annoying) and recovery is very fast.

Climbing stairs
Before. 
  • I could only go one floor and a half with extreme fatigue.
50 days. 
  • After 50 days of treatment I climbed up 3 floors. Fatigue has been significantly reduced pain and when it does appear more smoothly allowing us to stop and not reach the seizure. Requires noticing the first signs of pain we make a break of 15 or 30 seconds and then we return again rise.

Heart rate (beats per minute)

Palpitations as strong beat has never happened. Remember that Mcardle's disease when performing exercise and pulse rise to great heights is due to an emergency response agency to force us to stop and not cause damage.
  • The pulses are within normal limits.
  • You can walk at a fast pace pulses considered normal (see Figure 1)
  • I managed to climb the stairs three floors (above 1 and a half) to 120ppm.
Figure 1. Average heart rate.

As seen in measurements of heart rate chart has dropped to levels as a normal person that was taking the drug and the days passed. During that time the beats per minute have been very close to 90ppm. However as of January 10, 2015 I was forced to lower the dose to 250mg and resulted in an average increase of beats per minute that were closer to 100ppm but remained within normal levels. Once again taking the dose of 500mg pulses fell again.

The average heart rate for a distance of 300 meters with 250mg was 110ppm, with 500mg ended at 92ppm, a remarkable difference of 15ppm, to reduce the dose to 250mg stood at 95ppm and retrieving the dose of 500mg back down to the 93ppm.


Pain and stiffness in muscles of legs

Walk
Before. 
  • Before taking the drug lento.ra walked a pace I can walk at a pace considered normal (4.16 km / h) or very fast (6.4 km / h) and also unlimited distance.
Later. 
  • After 50 days and 500mg pain when walking is completely gone. You can walk at a normal speed (4.6 km / h) or very high (6.5 km / h) without problems and without distance limitation.
In Figure 2 you can see the improvement in walk distance and occurrences of pain. We also observe that pain episodes lasted less and less until it disappears completely.

Gray: resting heart rate.
Green: No pain or stiffness. There may be a very slight strain.
Orange: average pain bearable. Walking slowly if necessary. There may be light seizing the end.
Red: Walk slow or stop to avoid stiffness and severe damage.
Blue: the second breath ("second wind") occurs. You can walk on level normally.

Figure 2. Measurements: drug dose, walked meters, heart rate and symptoms. 



Climbing stairs

Regarding up ramps and steps have not yet noticed no improvement regarding pain and stiffness, if change in breathing.

Top floor and half of transitioning between 100 and 130 beats per minute. Even if he continued making stops soared up to 160 with pounding.

With 250 mg I climbed the stairs at home, first floor without problems. The next half had to stop. 
  • With 500mg and 21 days of treatment I uploaded 3 floors with minor pain and stiffness immediately notices and 120ppm. You may not post 2 or 3 rungs without suffering a severe seizure.
You squat. Bend down and get up

It is a critical point. I have suffered many serious stiffness to squat and squat stand up to me have prevented move for hours. The pain was very intense and dark urine. When I got up I always do very carefully and I have to help me with arms for not having a severe seizure.

With 250mg I did not realize evidence in the form of repetitions. I only tried it once and felt severe pain. Now I tried to bend down and get up 5 times helped with his hands. A 6 once appeared pain and 7 had to help hands to not seriously agarrotarme. The urine within 24 hours hours left colorless.

With 500mg, 13 days after starting treatment, I realized again squat exercises. I managed agarcharme and getting up 7 times in a row helped with his hands. 8 A time came the pain and failed the exercise. On day 20 of treatment repeated the exercise and got to perform 9 repeat until the pain appeared. 
  • With 21 days of treatment I've only had to stoop seize remarkable. Email to stoop down and talk with my 3 year old niece. I felt my muscles agarrotaban and rose gently helping her arms. I was very careful and seizure was mild. The discomfort lasted me all day. And the urine was normal within hours. It must have been a severe injury, of which end up in the hospital. I guess the seizure was mild to be no saturation muscle glycogen due to valproic acid.

Pain and stiffness in arms and hands

Before
The hands have always suffered. The seizure by straining to pick up objects such as shopping bags, carry bag laptop or cooking tasks like cutting onions, peel potatoes left me aching hands out stiff and in many occasions.

Now 
  • The stiffness in wrists and fingers to carry shopping bags less than 1 kg have disappeared. In carrying shopping bags 2 or 3 kg when I noticed slight pain and slight stiffness in the hands and fingers.
  • I tried doing pushups, I could only make 3 with risk of severe seizure.
  • I have conducted exercises squats (with arms) standing dropping the body on a table and back up again. You can perform 10 repetitions until the pain comes. He stands about 15 or 20 seconds and you can retake the repeteciones. And so on.
  • When you perform repetitive hand gestures as cutting onions, peel potatoes and similar things I've noticed less pain, but the hand muscles get tired.
  • Al dress not fatigue or pain in the arms occurs. I've only ever noticed a slight muscle fatigue if I'm in a hurry.
  • Me I can shower without fatigue, pain or stiffness.

Pain and stiffness in the back.

Before suffering from pains in the muscles of the back to make small efforts with repetitive motions like filling the dishwasher, clothesline, etc, tasks that had almost stopped performing.Heavy lifting could leave my back completely stiff.

Now 
  • Daily homework normally: put the dishwasher, set the table, etc. Not abuse its efforts lifting weights.
  • I got up and carried bags of food from the supermarket 1, 2 and 3kg without back problems. In weights of 2 to 3 kg for 200 meters I did not notice back problems. I carried the laptop in a shoulder bag hanging and walked without back pain.

Spontaneous seizure (seizure cramps).


Over a week used to have several spontaneous seizure in the legs without any exercise. In arms and hands just once a year. I normally occurred while lying in bed, sitting on the couch or just move one leg to another position. These were extremely painful stiffness. 
  • Within 50 days of treatment I have not had any episodes of severe stiffness and strong spontaneous pain. They have completely disappeared these episodes.

Fever and dizziness.

When walking above my ability long distances, make some specific physical exertion such as climbing stairs, go to the nearest bus stop, take the bus stand, take the subway, or spend much time standing had episodes of fever and dizziness taking between 10 to 30 minutes to recover. I always drink a sugary drink or blister glucose before to avoid or reduce this problem, and I drink one after to help recover glucose levels and recover before the dizziness. When the fever comes and dizziness is a strong feeling of discomfort, it is impossible to lift my head and I have to lie down immediately or even sit on the floor if I go by public transport, as there is an imminent risk of falling. 
  • After 50 days with valproic acid have not had any episodes of fever and dizziness.Nor have I perceived symptoms that I send news in advance of these episodes.

Urine.

I have conducted exercises squats and stairs (the most dangerous) with slight improvements, and I've walked miles and miles without problems. The urine remains colorless at all hours and all days not showing symptoms of muscle damage.

Side Effects.

Remember that the dose of 500mg I take is much lower than the doses of 1000, 2000, 3000 or 4000mg taking migraine sufferers, epilepsy or bipolar. Depakote ER (Extended Release) to be extended release further reduces the possibilities of side effects compared to Depakote nomal or delayed release (Delayed Released). 
  • In 50 days taking valproic acid (the last 14 days 500mg / day) I have not noticed any of the side effects of this drug.

Conclusions after 50 days taking valproic acid.

Major improvements 
  • Normal walking and exercising heart rate and other efforts.
  • Fatigue in breathing has disappeared. You can walk fast and talk at the same time without fatigue.
  • As you walk no pain or stiffness. It normally walk for miles (no limit).
  • The arm muscles recover if they get tired very fast (15-30 seconds). Even when exercising in the gym you rest a few seconds and can be performed again a series of exercises. With moderate exercise have been no seizure.
  • I have not suffered episodes of fever and dizziness.
  • I have not suffered episodes of spontaneous seizure (cramps).
Other improvements
  • Improvement to bending and lifting. Pain takes longer to occur and allows anticipate and prevent seizure is severe.
  • The hands get tired and sometimes seize up slightly by cutting potatoes, cut bread, cut onions, etc.
  • The hands do not seize the lifting groceries 2 or 3 kg.
  • When climbing stairs improvement in heart rate, fatigue and increase distance.

sábado, 17 de enero de 2015

Experience reducing the dose of valproic acid 500mg to 250mg Mcardle's disease.

I have been forced to reduce the dose of 500mg to 250mg. The reason is that I made ​​a new order via regular mail but it will take me about 21 days to arrive and thus ensuring that there will be retained by customs. The first order of valproic acid as performed by express mail and I took just seven days. As a result I had to ration the pills and take only 250mg and thus have enough pills until I get the new package of valproic acid. Then I'll take the dose of 500mg. 

The dose of valproic acid recommended by my doctor is 500mg and the dose you keep taking.This dose of 250mg is only timely manner until you have enough pills to resume my daily dose of 500mg.


This has allowed me to get some conclusions as reducing the dose of 500mg to 250mg affect me walking:
  • No fatigue. 
  • General improvements still occur (arms and legs).
  • Widespread improvements still occur but more slowly.
  • The ability to walk very fast without any pain nor stiffness is maintained.
  • The beats per minute have slightly risen by an average of 5ppm.
  • On the first two occasions and always after walking several kilometers occurred dry mouth and a very slight dizziness that may be due to lack of glucose or hydration. The intake of a beverage or food made any symptoms disappear. The following day I walked at a fast pace without any kind of symptom.
  • Squatting I managed to get up and bend over 11 times. In previous tests were 5 and then 6 times. The improvement with 250mg persists.

When analyzing the beats per minute if you look at Figure 1 we see pulsations have been increasing to 250mg. A significant and measurable increase. This means that the dose of 500mg is an optimal dose with a clear benefit at all levels, while the dose of 250mg evidence a slight worsening heart rate. 

Recall that the heart rate in patients Mcardle is an important indicator that the body warns us and wants to force stop exercise. So an increase in heart rate shows that the dose of 250mg is not optimal or sufficient for my, with 75kg of weight and height 1,87cm. However, it is clear that cleaning glycogen in muscle cells still occurs with 250mg because I can walk without any symptoms of pain or stiffness. In exercises that require more effort limitations 250mg dose would be more evident.

The words of the director of the research project in mice with valproic acid and anticipated that given the abundance of targets in the promoter of the human gene in mice compared facilitate that even with sub-toxic doses could get an enzymatic activity capable of wiping excess glycogen. The dose of 500mg and 250mg are considered sub-toxic doses.


These data allow us to draw some useful conclusions:
  • If you do not have enough pills to receipt of a new package of valproic acid we can reduce the dose to 250mg without notice little change.
  • Reducing the dose to 250mg and the results obtained conclude that enables cells to regulate muscle glycogen relatively normally.
  • If we are wrong and take some medication could reduce the dose.
  • People with problems of drug interactions or age inhibits platelet aggregation they could reduce the dose to 250mg. Although 250mg of valproic acid is an extremely low dose (subtoxic) compared with 2000 or 3000mg or much more than is prescribed for patients whose epilepsy and high doses can have the above affections.
  • A dose of 250mg is relatively functional for me. I weigh 75kg. Valproic acid the dose is determined by the weight of the person. So people with little weight as children or women require lower doses. There 125mg pills therefore could take doses of 125mg, 250mg, 375mg, 500mg or 625mg by weight. Recall that in the human clinical trial dose of valproic acid administered to patients Mcardle is between 300mg and 600mg.

miércoles, 7 de enero de 2015

Impressions after 21 days taking valproic acid for Mcardle disease.

The following results no longer measurements and assessments on an individual and therefore can neither intended to replace medical findings and conclusions.

Important:  . These are the effects that I noticed after 21 days taking valproic acid, the first 7 days taking 250mg a day and then another 14 days taking 500mg a day.

With 21 days taking 500mg of test results have continued to improve relative to the Measurements made ​​with 250mg (7 days) and 14 days with 500mg. They have also continued improvements in other aspects observed.

Breathing

In plain
Before the minimum who was suffering from a strong fatigue. Respiratory distress before treatment was very pronounced.
  • The improvement was immediate directly after taking the first dose of 250mg.Fatigue began to be mild. With 500mg fatigue was disappearing, and now there are no signs of fatigue when walking. No matter the distance, no matter if they are 100, 500 meters to 3 kilometers, no fatigue. Even walking fast no signs of fatigue.
  • You can walk and talk at the same time without any symptoms of fatigue.

Climbing stairs
with 250mg respiratory distress problems are down to climb stairs at home, ramps or tours of the platform and the subway stairs. I've noticed that when I get ladders (one can climb one floor and maximum average) does not miss me much breathing.

  • With 500mg and 21 days of treatment I climbed three flights of stairs with some fatigue, but not like before.


Heart rate (beats per minute)

Palpitations strong beat as have never happened. Remember that Mcardle's disease when performing exercise and pulse rise to great heights is due to an emergency response agency to force us to stop and not cause damage.

  • The pulses are within normal limits. Despite my low level of previous years keystrokes regained normal with the drug.
  • You can walk at a very fast pace with throbbing considered normal.
  • I managed to climb the stairs three floors (above 1 and a half) to 120ppm.
Figure 1. Average heart rate.

As observed in measurements of the graphic heart rate has dropped to levels of a normal person as was taking the drug and the days passed. The average heart rate for a distance of 300 meters with 250mg was 110ppm, whereas with 500mg finished in 95ppm, 15ppm a noticeable difference.


Pain and stiffness in muscles of legs

Walking
've noticed an improvement first and then with 250mg 500mg. Before taking the drug walked at a slow pace and now I can walk at a normal pace considerate of 4.16 km / h fast and also unlimited distance. With 250mg was improving distance walked appearing pain until the recent days to 300 meters. The pain came to an average painful but bearable degree, and took longer to reach seizure. Seeing the results with 500mg were improving my state and could walk away before the onset of the pain I had to extend the distances traveled to continue monitoring and measuring progress. Now half of the time the pain occurs very smoothly from the 300 meters and the other half of the tests have not been aches and walked normally.

  • Walk. With 500mg pain when walking has disappeared in most cases. You can walk at a very high speed without problems. There are very few times when there is pain, is very short and is very lightweight. With pain is very difficult seizure unless there rises at the beginning of a long journey or force the pace, and always would be minor injuries. The improvement was constant over the days. Distances before the pain begins were getting longer and sometimes no pain occurred. If the pain was appeared for a few tens of meters and slowing or making a small stop for 15 or 20 seconds or less is enough to make the pain go away. The pain is very mild, tolerable, no wincing in multiple punctures face or micro-breakages. If you continue walking with pain can just disappear or be forced to make a stop before the seizure being measured. It is preferable to make a short stop and continue painless and well paced.


In the graph you can see the improvement in walk distance and occurrences of pain. We also observe that pain episodes lasting less and less. And changes to "second wind" you can see that the pain lasts a few meters.

Gray : resting heart rate.
Green : No pain or stiffness. There may be a very slight strain.
Orange : average pain bearable. Walking slowly if necessary. There may be light seizing the end.
Red : Walk slow or stop to avoid stiffness and severe damage.
Blue : the second breath ("second wind") occurs. You can walk on level normally.

Figure 2. Measurements: drug dose, walked meters, heart rate and symptoms. 


In the graph you can the early days with 500mg and observe the observed change on the "second wind". The first few weeks it was necessary to downshift to slow pace for 100 or 200 meters to get the "second wind". As the days passed with 500mg was no need to search the "second wind" because the pain was very soft and you could keep a good pace walking. In the last 5 days when I walk (green) is observed, pain (orange) shows up and keep walking without stopping (green). If pain lasts appears so little that it is not necessary to reduce almost up and so do not call it "second wind". That is the reason because after the pain (orange) still use the green color. 

Important: On December 31, 2014 to mark the dinner and New Year's celebration did not take the medication (0 mg) to prevent any interaction of alcohol (wine and champagne) with valproic acid. It is observed that the January 1 December 2015 during exercises results quickly deteriorated during the day. If you want to know more about the duration of the effects of valproic acid'll explain in "Duration of effects of valproic acid for McArdle disease" .
Second Wind or "Second Wind"
I always had serious problems getting the second breath. A few meters appeared pains, I seized up and when I passed and I started to walk again returned pains and stiffness. When getting the "second wind" was walking at an extremely slow pace for a while but not always succeed. I could then walk normal or even faster pace for miles without problems.
  • After 21 days when pain occurs only have to reduce the rate or make a short stop for a few seconds until the pain is reduced too quickly or completely disappears. If pain is much smoother. If I continue walking 100 to 200 meters muscles can bind and having to make a short stop. Then to walk again comes the "second wind" and can walk normally even in normal ups.
Sprint
The last ten years could not run more than 25 meters, sometimes not even that. . It appeared the pain very fast and stopping was completely stiff and very tired I waited to reach the 21 days of taking the drug for testing: a sprint (run fast) of 60 meters.

  • 60m Sprint: No unusual fatigue. I have to stop because your legs get tired. Noto slight pain in the form of pins at the end that disappears in a few minutes.

Climbing stairs
Regarding up ramps and steps have not yet noticed no improvement regarding pain and stiffness, if change in breathing. Up supposed floor and pass through 100 to 130 beats per minute. Even if he continued making stops soared up to 160 with pounding. With 250 mg I climbed the stairs at home, first floor without problems. The next half had to stop.
  • With 500mg and 21 days of treatment I uploaded 3 floors with minor pain and stiffness immediately notices and 120ppm. You may not post 2 or 3 rungs without suffering a severe seizure.

You squat. Bend down and getting up
is a critical point. I have suffered many serious stiffness to squat and squat stand up to me have prevented move for hours. The pain was very intense and dark urine. When I got up I always do very carefully and I have to help me with arms for not having a severe seizure.With 250mg I did not realize evidence in the form of repetitions. I only tried it once and felt severe pain. Now I tried to bend down and get up 5 times helped with his hands. A 6 once appeared pain and 7 had to help hands to not seriously agarrotarme. The urine within 24 hours hours left colorless. With 500mg, 13 days after starting treatment, I made ​​back squat exercises. I managed agarcharme and getting up 7 times in a row helped with his hands. 8 A time came the pain and failed the exercise. On day 20 of treatment repeated the exercise and got to perform 9 repeat until the pain appeared.

  • With 21 days of treatment I've only had to stoop seize remarkable. Email to stoop down and talk with my 3 year old niece. I felt my muscles agarrotaban and rose gently helping her arms. I was very careful and seizure was mild. The discomfort lasted me all day. And the urine was normal within hours. It must have been a severe injury, of which end up in the hospital. I guess the seizure was mild to be no saturation muscle glycogen due to valproic acid. 

Pain and stiffness in the arms and hands

While I do exercises at home are very soft and therefore does not allow me to draw any conclusions. I have not tried forces with arms and hands so I can not judge anything about it.Later I will do some testing. The hands have always suffered. The seizure by straining to pick up objects such as shopping bags, carry bag laptop or cooking tasks like cutting onions, peel potatoes left me aching hands out stiff and in many occasions.
  • The stiffness in wrists and fingers to carry shopping bags less than 1 kg have disappeared. In carrying shopping bags 2 or 3 kg when I noticed slight pain and slight stiffness in the hands and fingers.
  • I've tried has performed pushups, I could only make 3 with risk of severe seizure.
  • When you perform repetitive hand gestures as cutting onions, peel potatoes and similar things I've noticed less pain, but the hand muscles get tired.
  • Al dress has reduced the pain and fatigue of the arms. I've only ever noticed a slight muscle fatigue.

Pain and stiffness in the back.

Before suffering from pains in the muscles of the back to make small efforts with repetitive motions like filling the dishwasher, clothesline, etc, tasks that had almost stopped performing.Heavy lifting could leave my back completely stiff.

  • I tried to fill the dishwasher and I have not had any binding or slight discomfort in the back.
  • I got up and carried bags of food from the supermarket less than 1kg without back problems. In weights of 2 to 3 kg for 200 meters I did not notice back problems.

Spontaneous seizure (seizure cramps).

I lost on this.
Over a week used to have several spontaneous seizure in the legs without any exercise. In arms and hands just once a year. I normally occurred while lying in bed, sitting on the couch or just move one leg to another position. These were extremely painful stiffness.

  • After 21 days of treatment I have not had any episodes of severe stiffness and strong spontaneous pain. They have completely disappeared these episodes.

Fever and dizziness.

When walking above my ability long distances, make some specific physical exertion such as climbing stairs, go to the nearest bus stop, take the bus stand, take the subway, or spend much time standing had fevers and dizziness taking between 10 and 30 minutes to recover. I always drink a sugary drink or blister glucose before to avoid or reduce this problem, and I drink one after to help recover glucose levels and recover before the dizziness. When the fever comes and dizziness is a strong feeling of discomfort, it is impossible to lift my head and I have to lie down immediately or even sit on the floor if I go by public transport, as there is an imminent risk of falling.

  • Since taking the medication I have not had any episodes of fever and dizziness.Nor have I perceived symptoms that I send news in advance of these episodes.

Urine.

During these days I walked even with pain, I have conducted exercises squats and stairs (the most dangerous). The distances traveled were getting longer and urine was colorless at all hours and all days.

Side Effects.

Remember that the Dicorate ER 250 is an extended-release drug, meaning that valproic acid gradually released throughout the day and therefore significantly reduces the chances of suffering any side effects.

  • In 21 days taking valproic acid (the last 14 days 500mg / day) I have not noticed any of the side effects of this drug.
Pending the results of an analysis performed on the second day you start taking valproic acid and other analytical within two months. 


Conclusions Results after 21 days taking valproic acid. 

Major improvements
  • Improvement in heart rate until normal levels during exercise and other efforts.
  • Fatigue in breathing has virtually disappeared. You can walk fast and talk at the same time without fatigue.
  • Most times I walk no pain. If pain is very mild and only have to slow down for a moment or make a short stop.
  • The pains are now mild in most cases.
  • If they get tired muscles recover very fast (15-30 seconds).
  • I have not suffered episodes of fever and dizziness.
  • I have not suffered episodes of spontaneous seizure (cramps).
  • Easier and faster to get the "second wind".
Slight improvements
  • Improvement to bending and lifting. Takes longer in pain and stiffness occur is less severe.
  • Hands seize up less and less pain when cutting potatoes, cut bread, cut onions, etc.
  • The hands do not seize the lifting grocery bags weighing less than 1kg.
  • Improvement in beats, fatigue and distance to climb stairs.

My experience with valproic acid has been very positive. Since taking the drug I've improved every day considerably. Normality in my day to day is almost complete. 

My life has changed dramatically. Before you go anywhere was an ordeal, now I'm looking forward to going outside to walk, shop, etc. I can go anywhere without worry. If I notice some slight pain I know in a few seconds will pass so slow road or stop a moment. In all I have to take care is to bend, climb stairs and stronger efforts or lifting weights. But still pains take longer to arrive, signal muscle effort and better tolerated when it arrives is not as severe nor as severe seizure.

 Also my muscle loss by disease and this should be borne in mind that you did before many exercise at work and at home. Possibly the greater exercise tolerance of the drug bound to an exercise program would help increase muscle mass and muscle capacity to make efforts to acceptable levels.