Hi Lindy,

Happy Easter to you as well, and thank you for the reply.

I consider myself to be a very observant person, and I do feel that since she has been on the IR and ER combination, that she appears to be in almost the same condition that she was before we saw a neuro and before she started medication.

However, there are some days that are better than others, as I am sure all PD patients have. Yesterday and today her voice was very weak. Sometimes it always sounds as if she has a scratchy thought, almost as if when you are sick and are troubled with that "tickle" feeling in the throat. However, I must say that in the past few weeks she has been attempting physical acts that she typically would not have attempted prior to starting medication. For example, this morning she and I made a green bean casserole to have for Easter lunch. This required that some large, fairly heavy cans of mushroom soup be placed underneath a can opener, and obviously required the can opener to open the cans. She was able to do this herself; the only thing she required assistance with was removing the can from the can opener after it had been opened.

She has also made comments that she can "feel" when, for example, a morning dosage of medication is wearing off around lunch time. To me, this must mean that she is feeling some type of relief while on the medication.

As her son, I simply really want to see her back to the way she was on the first week of the IR medication. Such a stronger, more emotional voice and facial expression, and overall a much more positive attitude. My father told me she had a really bad day this week which was sparked by an article she read in the local paper about Parkinson's. She made the comment to my father that she is "doomed". I just looked at the electronic copy of the article via the Internet, and it simply mentioned some of the progressive symptoms that patients may realize. She is already aware of the potential symptoms because I have printed many articles and Wikipedia information for her. Perhaps she was simply feeling a bit depressed this week, and the article was simply "pouring salt in the wound".

I will be taking the 26th of April off from work to attend the neuro appointment to express my concerns and observations since she has been on the IR and ER forms of the medication. She has been on medication for around 2 full months now, and I realize that this takes time.

One other concern of mine is some of the things I have been hearing about the long term affects of taking levodopa. Some argue that the levodopa is actually what may cause the disease to be progressive, and that it can show immediate relief of some PD symptoms, but in the long run it may actually be starving the brain of dopamine itself.

Thanks,

Matt

Matt,

First, there is absolutely no evidence that levodopa causes disease acceleration. This was the thought at some and neurologists once withheld levodopa therapy as long as possible, thought we all eventually end up taking it. A fairly good overview of the levodopa question is found here; it has in fact instead shown to have neuroprotective properties. There is a fairly recent study you may want to look up for more info; it is ELLDOPA- this has some contradictory results on the protective front, but I think both should serve to support that at the very least it does not seem to accelerate the disease process. Many people take it for decades, so I don't think that would be the case otherwise.

That's not to say Levoodopa does not prevent us with other issues especially when we have to take a lot of it.

CR has a lower rate of bioavailability (70% vs. 99%) than the IR, so it come with its own distinct set of issues (I know these to be true from experience):

- It can result in too much accumulation in the bloodstream later in the day resulting in more dyskinesia.

-It is more reliant on food being present to aid absorption, and the IR is more reliant on a more empty stomach- you can see the issue here.

-Older patients may experience mental confusion and hallucination more readily on the CR formulation.

Is your mom still taking 1 full 25/100 Sinemet IR plus 1 25/100 Sinemet CR for all her doses? Usually, the goal of the CR is to give more time and less IR pills. That means ideally with CR one has 4-6 hours between doses and we use Sinemet IR only when the CR won't kick in.

I am wondering if your mom isn't experiencing times when she is undermedicated due to the difficulty it takes in achieving a balance between the two meds. It also sounds to me from the description of your mom being both stronger physically yet with a weak voice or slowness in speaking that she may be "in between" where her meds are working at like 75% and she's not entirely her normal self - this happens sometimes with the CR; there is also a "skipped dose effect" that can occur where it would appear we did not take our meds at all, and is frustrating. Or she may also be experiencing a little confusion from the CR which may be the "weakness" you hear.

I would ask the neuro her goal in prescribing both? Does she want your mom to take them both together or eventually take less of the IR? Also, she might be able to conduct a little exam to check for confusion if that at all may be an issue. This like I mentioned would be CR related.

Many of us do experience depression and end up going on a med for that as well. Also keep in mind that she has been fairly recently diagnosed and we go a wide range of emotions - it has been likened to going through the stages of grief that Kubler-Ross had identified.

Ask lots of questions; your mom and your family deserve to know exactly what the neuro's goals are with the meds. There are other meds out there if things continue in this vein.

Laura

Laura,

Thank you very much for the quick response. I wanted to let everyone that contributes to this thread know that I speak very highly of you all due to the continued support that you provide, among other things.

Thank you for the links to the levodopa information. I will read them shortly.

To answer your specific questions, yes, the dosages and medications that you listed above are what my mother is taking. She takes 2 pills at the same time, 3 times per day. One of the pills is the Sinemet 25/100 IR, and the second pill is the Sinemet 25/100 CR. Based on my understanding of the typical goal of CR, I am starting to convince myself more and more that my mother is overmedicated, or, perhaps the doctor's instructions for what to take and when to take it were misunderstood. I think I am going to ask my mother to call her doctor prior to the visit on the 26th to confirm that she is taking the dosages correctly.

Might I ask this question, and perhaps it is difficult to answer. Supposed that after the 26th the doctor recommends switching to only CR, using the IR meds only when needed. What is the liklihood that this adaption and change is going to take quite some time to be adjusted to? I understand from previous posts that this is really a trial and error process, but I am trying to prepare both myself and my mother for any delays that may be realized if the medication and/or frequency is changed.

Regarding the depression, she has been on a mild anxiety pill for quite some time. She started taking it after her 1st spinal fusion surgery in April of 2009.

Again, this is great information and will go into my journal and also will add to my list of questions that I am preparing for the 26th.

Thanks,

Matt

Hello All,

We had our third neuro appointment this morning so I figured I would write with an update while everything is still fresh in my head.

After today's appointment, my mother will be taking the following

Morning:

(1) Carbidopa / Levodopa 25-100 IR
(1) Carbidopa / Levodopa 25-100 CR
(1) Requip XP 2 milligram

Afternoon:

(1) Carbidopa / Levodopa 25-100 IR
(1) Carbidopa / Levodopa 25-100 CR

Evening:

(1) Carbidopa / Levodopa 25-100 IR
(1) Carbidopa / Levodopa 25-100 CR
(1) Requip XP 2 milligram

As you may notice, the only thing that has changed has been the addition of the 2 mg of Requip XL, administered twice daily.

We had the folllowing points of discussion with the neuro.

First, I expressed my concern that my mother is not the same now that she has been on the IR and the CR, and that I felt there was much more benfit when she was taking IR only. The doctor disagreed with me and feels that she sees drastic improvement in my mother compared to both the first and second times that she has seen my mother. I asked why she seemd to show great benefit from the IR, but not as much benefit (in my opinion) from being on the IR and CR at the same time. The doctor said this was because prior to seeing a neuro, my mother had a dopamine starved brain, and the IR was like a happy pill. After that initial "high" went away, it appeared to us as if she was not doing as well, when in reality she is. After the doctor explained this, I saw her point.

We continued to discuss that my mother's mobility has become more "fluid" than it was prior to starting meds. She does move around a bit quicker, takes on more physical activities such as minor cooking, writing checks to pay bills, etc. The majority of the aforementioned items my mother could not do prior to taking meds.

My mother's physical therapists have commented that she is standing up more straight and continues to show improvement when attending physical therapy.

I asked the doctor to answer why she has my mother on IR and CR at the same time. Her answer was that she is trying to avoid the "nulls" typically realized when taking IR or CR, but not both at the same time. She also mentioned that she does not want too much dopa to be in my mother's system, which I did not understand because techincally my mother takes 600 (mg?) of levodopa a day based on her current prescriptions. The doctor also explained her concern that physicians try to strike a balance in a patient between relief from symptoms and acceptance of certain side effects that can be caused from the dopa.

I asked about the differences between Sinemet and generics. The doctor explained everything that I have learned from this forum thus far, and wants us to pay attention to the fine print on the bottles of the generics to make sure they remain the same throughout all the refills.

I asked about my mother's toe curling and leg swelling. We were told that the toe curling is a side effect of the medication, but I mentioned that her toes curled even before taking medication. The doctor said knowing that the toes curled prior to medication was a key point because it may allow my mother, if required, but not now, to have more dopa in her system because the toe curling may not be being caused my the dopa, but the disease in general. I asked about botox shots being an option for the toe curling, and the doctor said yes they are an option, but that she does not administer them.

I asked if there were any other vitamins and minerals that my mother could be taking that may help with the PD. The doctor said that the general vitamins and minerals my mother currently takes are good enough for now.

The doctor was happy to hear that my mother is no longer taking medication for her incontienence nor her pain medication, although my mother still struggles with incontinence.

We were given, on the spot, 42 pills of the 2-mg Requip XL. The doctor described the Requip as a "helper pill" or "cousin pill" of the carbidopa / levodopa. She said that the Requip XL is supposed to extend the half life or the duration that the dopa does its job.

The doctor said we must pay attention to any odd behaviour that may surface after my mother starts taking the Requip XL, because it is a known side effect.

If the Requip XL seems to help, we need to call the doctor because the 42 pill supply she had laying around the office will only provide for about 20 days of medication. If it continues to work, she said she would write us an Rx for more.

We asked about purchasing a stair-climbing system for my mother, even though my mother refuses to use one at this point in time because she wants to get to a point where she can make the steps without any assistance. The doctor mentioned that if we desire, she can write an Rx for such a system?

Our next appointment is scheduled for the 9th of July.

Overall I was pleased with the appointment. She again spent a lot of time with us and answered all of my questions. I challenged her on my mother's progress and she firmly disagreed with me, and gave her medical explanation. The point she brought up, which I agree with, is that my father and brother see my mother everyday. I see my mother every weekend. The doctor only sees her once every month. The doctor said she sees great improvement in my mother compared to the day we set initial foot in her office back in February. As I mentioned earlier, the doctor said that as family members, our expectations were set by the initial symtpom relief of the IR and IR only medication which was a false expectation based on the fact that my mother's brain experienced a high from the IR.

That's about all for now. Any comments or questions are welcomed.

Thanks for your continued support,

Matthew

Hey,

Just wanted to say that it sounds as your mother has a good, caring doctor...one who listens!

I take CR and IR; I do understand for not wanting your mom to experience the "nulls", and it seems that she ip i treatment approach. I do not take mine together ...I tend to use the IR in between to keep my "nulls" at bay.

Best to you and check in from time to time!

Laura

Hi Laura,

Thanks for the reply.

I spoke to my mother this afternoon and she said that the Requip XL makes her very sleepy. After performing some reading, this seems to be a very common side effect of the Requip XL. I said to her that I would guess that she probably does not realize any "extended relief" from taking the Requip XL if she is feeling sleepy after taking the medicine, and she agreed.

She said she is going to continue to take the medicine until the 20-day supply or so is expired. I do not know if the sleepiness will eventually go away. I suppose we will have to contact the doctor via telephone and inform her fairly shortly if the medicine does not help.

Just an update.

Thanks,

Matt

Hello All,

It has been quite a bit since I made a post so I figured now is a good time.

First, I was mistaken when I listed the medication and frequency she is taking them. Below is a correct version:

Morning:

1 - Carbidopa / Levodopa 25/100 IR
1 - Carbidopa / Levpdopa 25/100 CR
1 - Requip XL, 2 mg

Lunchish:

1 - Carbidopa / Levodopa 25/100 IR
1 - Carbidopa / Levodopa 25/100 CR

Dinnerish:

1 - Carbidopa / Levodopa 25/100 IR
1 - Carbidopa / Levodopa 25/100 CR

Bed:

1 - Carbidopa / Levodopa 25/100 CR
1 - Requip XL 2 mg

The Requip XL is still making her feel tired and lethargic. However, I have noticed that when she has her "on" days, she is really "on". For example, she is strarting to show interest in going places that she never wanted to go to before. She is starting to go out to eat with us to diners are such, last weekend we went to a Border's book store so she could buy some books, and yesterday we went to lunch and then to a Yankee Candle store. She is able to get herself in and out of the passenger seat of our GMC Terrain, albeit slowly.

For mother's day I bought her an HP Mini Netbook laptop. I bought this for her so she could have something to do during the day besides read her books and go to physical therapy. She loves it. She is slowly re-learning how to use the Internet and check her email, but I can tell that she truly enjoys it.

Her doctor emphasized that she needs to continue to do the physical therapy 2 days a week, but during the days she is not at therapy, she needs to remain active. I think these instructions from the doctor were the fuel to the fire that is driving the fact that she is showing interest in going places, which is great.

Based on her current medications and frequency, she is ingesting around 700 mg of l-dopa a day. If you guys would not mind sharing, is this number less than what you take, more than what you take, the same as what you take? During your trials and tribulations with medications, how did your bodies react to certain mg dosages of the l-dopa? The doctor expressed her concern where she tries to keep certain patients under a certain mg of the l-dopa due to the side affects, which is one reason why she did not increase my mom's l-dopa after this last appointment, and instead gave her the 2 mg of Requip XL to try to evenly distribute the l-dopa throughout a 24-hour time period.

My mom's primary side affects of the current dosage of l-dopa is muscle aches, and it appears as if her legs swell quite a bit. Her feet have grown in size and we had to order some new shoes that were 1/2 size larger in length and 1 size wider in width.

Any thoughts?

Thanks for the continued support.

Matt