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John B

Side Effect Or Wearing Off?

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I'm new to this forum and am in awe of the amount of good information exchanged here.  My wife has had problems since 2014 with movement and anxiety.  I try to help her as much as I can and hope to gain some knowledge.   I will give a little background and then ask my questions.  I apologize if this gets too long.

The basics of it includes 2 hospital stays for inability to walk and severe anxiety, inpatient and outpatient physical rehab, every test anyone could think of, 10 neurologists including local hospital plus Vanderbilt and UAB.  All tests negative and NO diagnosis.  Prior to 2015, she had not taken ANY prescription medication in her entire life and had enjoyed good health.  She was an avid exerciser.  She is currently 100 pounds which is her normal weight.  It turns out she is very sensitive to medication and small amounts seem to affect her more than most people.  She is 64 years old.

About 18 months ago after she returned from an 18 day hospital stay (in a wheelchair with no rehab!), one doctor decided to try generic Sinemet 10/100 three times per day.  It was unclear at that time if the med made any difference at all, but she did gradually regain her ability to walk without falling too often and she continued this med at the same 3/day.  Other current meds are mirtazapene 45mg at bedtime and clonazepam 0.25 mg 2/day.

She was not eating well and had lost weight from refusing to eat her evening meal.  At my insistence, she had gradually increased in physical strength and worked up to walking outdoors as much as 3 miles at a time with fairly good gait and no complaints.  Indoor gait was not nearly as good but was stable.  About 4 months ago, she reported difficulty moving in bed.  Eventually this developed into inability to either rise from bed or get into bed.  Eventually that led to needing much assistance walking at all.  She has good balance at all times, but has an irresistible tendency to walk with bent legs, on toes, with short steps, which leads to a stutter-step, freeze and fall forward.  This is a return of symptoms from 18 months ago.

I did some online reading to see if she was getting the best from the carbidopa/levidopa, thinking maybe the underlying condition had progressed and possibly the med was actually working but was not enough.  I started giving the C/L on empty stomach and changed her bedtime dose to 5pm.  This turned out to be a very good thing as she now was willing and enthusiastic to eat her evening meal!  in 3 months she has regained the weight she lost in the prior year.  Symptoms have slightly improved as well since the schedule change probably due to a general attitude improvement.  She is better in the mornings after her 12 hour sleep.  Prior dosing times were 9am, 2pm, and 9pm.  Current dosing times are 9am, 2pm, and 5pm.

A pattern of response to this drug has become clear (90% of the time or more).  I can't believe I didn't notice it before as it has been there for 18 months.  Current response to each C/L dose is: During the first hour, no change good or bad.  During the period from 1-hour-after until 3-hours-after, she does very well and sometimes says she feels great.  Generally she walks upright during this time with good length of steps and needs no assistance.  At 3-hours-after she starts to get anxious, and by 4-hours-after, the anxiety can reach very severe proportions (as in total debilitation and panic attack).    So it seems that it was not lack of appetite keeping her from eating, but instead was anxiety!

So my question is this.  Given the response pattern noted, is this anxiety a symptom of wearing-off or is anxiety a side effect of the C/L that waits 3 hours to emerge?

You have my thanks for sticking with my writing this far!

 

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John,

I am glad that you found this site and also that you have found it so helpful. That is what we strive for.

The symptoms that she is experiencing, walking on the toes, bent legs, and leaning forward, are key symptoms to Parkinson's Disease (PD). This, in turn, causes most PD patients to fall forward. Most other disease states or conditions usually cause the patient to fall backward. You also did a great job of recognizing that Sinemet should be taken on an empty stomach, which can make a huge difference as you saw.

The anxiety feeling when she is going "off" can be caused by a few different reasons. (1) When a patient goes off (which means their medication is wearing off) can usually be felt internally before the external symptoms become visible to others. I think the best way to describe it to people who do not have PD is what I call the "volcano effect." When a volcano is ready to erupt, internally the ground is moving and shaking. This is how it feels for someone who has PD. They can feel it internally before symptoms are visible. When the volcano finally erupts, it is then that people can see the ground shaking, smoke, and lava. This eruption in PD is when the symptoms become visible to others. (2) The anxiety can also be due to the fact that the patient knows that the time to take their medication is getting close and the anxiety takes place because they are worried that others may see the symptoms or that the symptoms may be more severe than what they are used to. Therefore causing anxiety. 

Now to the Sinemet dosing. There are 2 possible ways to help increase her quality of life. One would be to increase the frequency to coincide withe her off times. If the strength appears to almost rid her of symptoms, then you know the dosage should be correct. Instead of 3 times daily, you may want to discuss with the Dr. to change it to every 3 hours. The only downfall to this is that she may experience dyskensia, which can be caused by too high of a dose of Sinemet. Dyskensia is uncontrolled, involuntary muscle movements. Whereas PD tremors are small uncontrolled shaking or movement in the hands, dyskensia is usually greater movements of larger muscles and can result in movements that look like jerking of the whole arm and possibly the neck.

The second way to possibly increase her quality is to talk with the Dr. about possibly using a long acting Sinemet, called Sinemet CR. It comes in two different strengths, CR 25/100 and CR 50/200. This long acting form is slowly released usually over an 8 hour period and is usually dosed at 3 times daily, or in some instances less.

I hope this helps and please keep me posted.

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Thank you, Mark, for your comments and for your focus on her quality of life.  Your comments help with my understanding and with preparing for her next doctor visit.  She is a good "test taker" so the doctor sees very little evidence of the symptoms.  I have to tell about the symptoms or they don't get considered. 

I have some follow-up questions, please.

If the dosing of C/L 10/100 were changed to every 3 hours, how would you physically avoid times of full stomach?  The practicality of this baffles me.  Or maybe I should be asking how important is the empty stomach dosing?  Or maybe the question should be how long after dosing to wait before eating and how long after eating to wait before dosing? Related to this, how would a controlled release product avoid this, since it is releasing at several times over its 8 hour span?

She has occasionally had some of the large involuntary arm movements you mentioned (at times of anxiety).  Not every time, though, maybe 10% of the time, when some other stress is in action.   Early on, in 2015 before any meds and before any significant walking problems, she had smaller involuntary movements of hands and legs.  Her primary care doctor thought it indicated PD, but the neurologists (10 of them) said no PD.  One who commented in more detail said these were not PD tremors, but were the wrong frequency.  I later associated these smaller movements with anxiety also.

She is pretty much OK walking at 9 am after 12 hours sleep and 16 hours without a dose of C/L.  Would this be consistent with PD or not?  Does something happen during sleep to generate the brain chemicals she needs?

Thank you again for your learned comments!

John

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The dosing of every 3 hours is difficult to arrange with eating. Sinemet should be taken 1 hour prior to eating or be taken about 90 minutes after a meal. If she were to switch to the long acting, she could take the morning, afternoon,  and evening doses an hour before breakfast, lunch, and dinner.

The empty stomach issue is important,  but not as important as eating. If someone eats and takes Sinemet,  the amount of Sinemet will be decreased. The main proponent to avoid is protein with Sinemet. Protein taken with Sinemet will completely negate the effects of Sinemet due to protein binding the liver enzymes so the Sinemet cannot be metabolized to it's active ingredient.

I hope I can give clarity on how sleep helps PD patients. When we sleep this is the only time when our Dopamine cells can rejuvenate themselves. This is because we don't move much in our sleep which allows our muscles to rest and not use much Dopamine. That is why she is doing so well in the morning after a good night of sleep. 

I hope this helps and please keep me posted. 

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We have a couple of weeks before she goes to the doctor, and I want to make sure to be prepared by having a basic understanding of these drugs.  If a larger dose of immediate release sinemet, say 25/100 were given, would the good effect last a longer time?  What would be the downside?  Is the CR version always preferable?

Another forum member kindly informed me of comtan, which I understand to be an extender of the effects.  Is that drug appropriate?  Is it well tolerated?

She is very sensitive to change in medication.  Both times she went into the hospital, it was following a seemingly minor change in medication.  So we want to go very slowly with any change.  What would be a reasonable transition plan to go to the CR version?  How about if the doctor were to go with 25/100 immediate release?  I have found that her doctors don't really pay much attention to the transition.  Or maybe she is just more sensitive to change than people they usually encounter.

Your comments are very helpful.  Thanks!

John

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John,

The larger dose may last bit longer, but may also cause more unwanted effects, such as dyskensia. When I evaluate a persons medication schedule I look at the dose compared to the symptom relief. In this case if the 10/100 is working, but not long enough, that person may be a good candidate for the Sinemet CR 10/100.

I took into consideration her sensitivity to medication and decided not to introduce, at this point, another medication. Comtan is a medication that must be used with Sinemet, usually the extended release version, and can extend the benefit of the Sinemet. That is why I chose not to include as an option. The way I handle medication management in a Parkinson's patient, as well as most other medications is to "start low and go slow" with any medication that is introduced to the patient. By following this rule of thumb we avoid adverse reactions that will be  more harmful than helpful. I also look at the patient make-up to see if they have any issues about medications, such as medication sensitivity. Comtan is well tolerated, but I believe that there are other options available so we can avoid her medication sensitivity.

Lastly, many doctors who treat specific ailments, such as Parkinson's, must be open and listen to their patient's and adjust accordingly, especially with Parkinson's patients. At this point I believe the doctor may go with either the Sinemet 25/100 three time a day or the Sinemet CR 10/100 three times a day. I would like to see the later due to the fact that she is responding well to the Sinemet 10/100 for the relief of her symptoms, all we need is to have it work for a longer period of time.

I hope this helps and please keep me posted.

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Am I correct in assuming the 10/100 CR and 10/100 immediate release (currently taken) contain the same total amount of medicine?  So probably no slow transition needed?

If he were to go with 25/100 immediate release, what would be a reasonable transition over time?

Your comments are very helpful!  Thank You!

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John,

With either medication change there is usually not a transition period. The fact that she is sensitive to medication changes, if they were to change her to the 25/100 the may have her start out with 1 tablet a day for 3 days, then 1 tablet twice daily for 3 days, then 1 tablet 3 times a day from there on out. That is truly a doctors call, but since she has a sensitivity issue, the second option of slowly increasing how many times a day may be the better option. 

I hope this helps and please keep me posted.

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