PD "off" Periods and Asthma: Anyone else had this?

Posted by nova11723 @nova11723, Aug 9 9:28pm

Hello all. I've noticed that sometimes when my "off" periods go a little long or are unexpected, I often have asthma. I am not sure if PD brings this on or if the asthma leads to the extended "off" period, but a puff or two of my control inhaler often stimulates a change to an "on" period. Has anyone else experienced this?

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I have the same problem myself. I wish there was a way to circumvent it.

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Profile picture for bern7475 @bern7475

I have the same problem myself. I wish there was a way to circumvent it.

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@bern7475
Are you referring to asthma or just off periods of PD?

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Profile picture for bern7475 @bern7475

Off periods of PD

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@bern7475
If you mean between doses, there probably are ways. It may be possible to have a completely "on" day if you get it right. I mean between 6 AM and 10 PM. I have early onset PD and am obviously not guaranteeing what works for me, and I do not take credit for what I will share. But maybe this will help.

For me, one dose of Sinemet with nothing else lasts about 2.5 to 3 hours. But you never take that alone. You combine it with something like 4-8 mg of dopamine agonist such as Requip in the morning, which lasts most of the day. But it also brings upon some compulsive side effects, which I will leave for now; bottom line is the side effects are manageable in my opinion. You also mix in a Rytary extended release type drug and an extender drug, such as Comtan or others, to accompany every Sinemet dose, and you may be able to take the dose every 3-4 hours and be "on" most of the day.

However, there is a lot of work involved in making this happen. I mean adaptation based on stress, exercise, and food, and monitoring long term health and if you need extended rest or adjust the medication. I can share more details if you want, but I want to emphasize that I am not a doctor, and this is only what has worked for me over a number of years in consultation with medical professionals.

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Profile picture for nova11723 @nova11723

@bern7475
If you mean between doses, there probably are ways. It may be possible to have a completely "on" day if you get it right. I mean between 6 AM and 10 PM. I have early onset PD and am obviously not guaranteeing what works for me, and I do not take credit for what I will share. But maybe this will help.

For me, one dose of Sinemet with nothing else lasts about 2.5 to 3 hours. But you never take that alone. You combine it with something like 4-8 mg of dopamine agonist such as Requip in the morning, which lasts most of the day. But it also brings upon some compulsive side effects, which I will leave for now; bottom line is the side effects are manageable in my opinion. You also mix in a Rytary extended release type drug and an extender drug, such as Comtan or others, to accompany every Sinemet dose, and you may be able to take the dose every 3-4 hours and be "on" most of the day.

However, there is a lot of work involved in making this happen. I mean adaptation based on stress, exercise, and food, and monitoring long term health and if you need extended rest or adjust the medication. I can share more details if you want, but I want to emphasize that I am not a doctor, and this is only what has worked for me over a number of years in consultation with medical professionals.

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@nova11723 I would appreciate whatever information or personal experiences that you would like to share. I am aware that we are all different but sometimes there is a common thread that can make a difference. Thanks for sharing your experience and perspective.

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I find that my body's ability to stretch a dose and avoid an "off" period is impacted by many factors, and you can't always determine what is happening. But over time, you can identify trends. This is not a set it and forget it approach; it requires constant thought about what your body is telling you. For me, I can start to feel the dose wearing off when my tongue starts moving to the front of my mouth and my mouth wants stay open. That often happens when my next dose is supposed to be taken. I also feel the stiffness come back, which affects my walking. I am still working, so this can happen during meetings, although adrenalin seems to not let it happen at critical points.

I have been told I have good reaction to the medicine, which makes this approach possible I think. In the past I have taken fewer drugs, but I have seemed to be stable at this current condition for the last few years. And I am still working, having only told a couple people at work. There will come a day when I need to tell more, but I am enjoying my current ability to stay somewhat "in the closet."

Anyway, I take doses of Sinemet/Rytary/Comtan every four hours during the day. If I need more before the next dose, I take a half dose of Sinemet. I also take 8 mg of Requip in the morning and 4 mg at night. This may seem like a lot, but it makes me feel the most normal rather than the high-strung person I became with other stronger drugs. I am okay with taking the doses within a half-hour of the time as long as I understand why (e.g. heavy exercise routine, raised stress level) I also can drop Comtan if I am too wired, which can happen when I feel good on weekends or after I get a lot of sleep. But the key is the mind and body need rest, so using either too much will impact performance down the line.

Eating regularly and drinking enough water also have a role. Also asthma of course. But above all, stress can impact the body's ability to absorb the drugs, and extreme stress has led to strange and bad things in the past. This is just my experience.

REPLY
Profile picture for nova11723 @nova11723

I find that my body's ability to stretch a dose and avoid an "off" period is impacted by many factors, and you can't always determine what is happening. But over time, you can identify trends. This is not a set it and forget it approach; it requires constant thought about what your body is telling you. For me, I can start to feel the dose wearing off when my tongue starts moving to the front of my mouth and my mouth wants stay open. That often happens when my next dose is supposed to be taken. I also feel the stiffness come back, which affects my walking. I am still working, so this can happen during meetings, although adrenalin seems to not let it happen at critical points.

I have been told I have good reaction to the medicine, which makes this approach possible I think. In the past I have taken fewer drugs, but I have seemed to be stable at this current condition for the last few years. And I am still working, having only told a couple people at work. There will come a day when I need to tell more, but I am enjoying my current ability to stay somewhat "in the closet."

Anyway, I take doses of Sinemet/Rytary/Comtan every four hours during the day. If I need more before the next dose, I take a half dose of Sinemet. I also take 8 mg of Requip in the morning and 4 mg at night. This may seem like a lot, but it makes me feel the most normal rather than the high-strung person I became with other stronger drugs. I am okay with taking the doses within a half-hour of the time as long as I understand why (e.g. heavy exercise routine, raised stress level) I also can drop Comtan if I am too wired, which can happen when I feel good on weekends or after I get a lot of sleep. But the key is the mind and body need rest, so using either too much will impact performance down the line.

Eating regularly and drinking enough water also have a role. Also asthma of course. But above all, stress can impact the body's ability to absorb the drugs, and extreme stress has led to strange and bad things in the past. This is just my experience.

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@nova11723 My asthma has been really bad recently, and I have noticed numerous times where I was "off" longer than I should have been. Most times, a couple of puffs of Symbicort led to turning "on" within 15 minutes.

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Profile picture for Teresa, Volunteer Mentor @hopeful33250

@nova11723
No problem—sometimes autocorrect changes our words! I also take Symbicort, but I use it regularly. For me, asthma is a recent diagnosis.

I've never noticed any correlation between asthma and off-times with PD, but you do provide an interesting thought.

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@hopeful33250 It seems to be a logica conclusion. If dopamine is a neurotransmitter and appareanatly every musclr movrmrnt you make relies on Dopamine to help Mr. Brain to order ,Leg to move, Maybe there's some function in the body that may also require dopamine and if could be a function that's some how involved in breathing. I'm convinced that it's the reason my eye muscles won't coordinate as much andy more an I keep seeing double and have to actuall work to get them on the same page/letter on a page.

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