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

Hello All,

I wanted to provide an update.

After my mother extinguished her 40 day trial of the requip XL, the doctor wrote an Rx for a new dosage of the requip XL, only to have the health insurance company refuse to pay for the medication. So, instead of getting requip XL, we got the generic form, which is called ropinirole.

The ropinirole had the same affect on my mother, that being it made her feel very tired and lethagic. Most recently, she broke out with a bad rash on her neck and her legs. My mother contacted the dr's office and was told to stop the ropinirole and an appointment was expedited for my mother which is this Tuesday the 15th of June. Her next appointment was supposed to be in July, but I suggested that she not wait that long if her medication combination is not working!

Today we cooked lunch (spaghetti and meatballs) and I noticed that she is getting around the kitchen without her walker by grabbing onto the edges of the kitchen cabinetry and table tops. This is a good thing. I think that she 'seems' much better since she stopped the ropinirole because she does not seem as lethargic and 'out of it'.

I am hoping that the doctor will have same answers on Tuesday. If you recall, at the last appointment we were told to try the requip xl and keep the ldopa amount the "same" in hopes that the requip xl would prolong and extend the amount of time the ldopa was in the system. The doctor's preferred not to increase the ldopa right away.

Any comments or thoughts are appreciated.

Thanks,

Matt

Hello All,

I spoke to my mother yesterday evening after her Dr. appointment. The doctor has given her an equivalent of +150mg more of IR ldopa per day. I forget how many pills this equates to, but I believe that the addition 150 mg will be administered in "half pills".

I believe this logic was deduced based on my mother's input that she feels as if her meds do not really kick in until her afternoon dosage.

I will post a new message after a few days and we see how she is doing. I have noticed that she is much more talkative and conversational now that she is OFF of the Requip XL.

Thanks,

Matt

Hi Matt,
Just to say that it is not uncommon for medications to be kicking in better after the second dose of the day, or just later in the day, probably something to do with the gap between last dose and morning. Or even just sleep itself.
Catching up on the nightime dip. Also sometimes the slow release forms are not so bioavailable to the brain, less is absorbed. An across the board increase could turn out to be too much, but giving you this for information only, if it is it will show up in some way, you are probably learning that this thing of dosing is trial and error anyway.

Lindy

Hello All,

It has been awhile since I have written so I figured I would provide an update. Yesterday afternoon we took a trip down to the University of Pennsylvania's Parkinson's Disease and Movement Disorders Specialist facility. It had come recommended to me by a family friend. We were to the point where we were not thoroughly satisfied with our local neuro's effort, in conjunction with the fact that we had heard many positive things about the University of Pennsylvania.

We were seen by "doctor #1" who started off by asking my mother what brought us down there yesterday afternoon. My mother described why we decided to come down, and the doctor began looking at my mother's current prescriptions, dosages, frequencies, etc. The doctor was asking a ton of questions and typing on her computer at the same time. I noticed that a lot of the questions seemed to be tailored towards determining if the medication was the correct medication, and what times of day it was or was not working. After asking a ton of questions, the doctor performed an extremely thorough physical exam on my mother, asking her to do things even I would struggle doing at 27 years old. After performing the physical, she grilled my mother with some additional questions. After that, she said she would return shortly after reviewing my mother's MRI of her head and neck from months ago. She returned, and she returned with a second doctor. The second doctor ("doctor #2") asked my mother more questions, and the majority of them seemed to be repetitive and redundant based on the first doctor's set of questions, but I had a feeling this was by design. The second doctor then performed a second physical on my mother, and continued to ask questions.

The results are as follows:

1. The doctors are not convinced my mother has PD
2. The doctors said they do not like to prescribe the CR form of ldopa because of its inconsistency and variability of absorption into the body
3. The doctors removed my mother's present dosage of CR and replaced it will a higher dosage of CR to be taken only in the evening.
4. The doctors are continuing my mother on the IR form of ldopa, same strength, but are changing the times of day and amount she is taking

They printed a medicine schedule for my mother to follow for the next 4 weeks. The frequency and dosage of the medication actually changes from week 1 to 2 to 3 to 4. After 4 weeks my mother is to return and report the results. The purpose of the exercise is to see if the CR is not doing her any good and to see if the would benefit more from taking more IR. The second purpose of the exercise is to see if she does not respond to the IR, then she may have atypical Parkinson's and hence why the ldopa is not working in her treatment.

The doctors also recommended that my mother participate in some type of speech therapy. It turns out that the first floor of this building has a physical and speech therapy department. On the 14th of December my mother has a 9:00 AM appointment with the doctor, then at 10:30, 11:30, and 1:30, she has physical and speech therapy on the first floor of the building, just to try it out and see how it goes.

I have been reading about the differences between atypical PS versus PD and what I have been reading does not seem pleasant. It seems as if atypical PS is harder to diagnose than PD because of the patients' lack of response to ldopa therapy.

That is where we stand now. I am hoping that the manipulations in medication end up working for the better, but I was curious to know everyone's thoughts and if you have any experience with atypical PS?

Best Regards.

Matthew R. Smith

Matt -
I have just read your posts with much interest and thought how lucky your mother is to have you pulling for her. It sounds as though she will be getting valuable new perspectives on her illness and what can be done; I think trying a new neuro was a very good idea. I know this must be extremely hard on you and all family members - hang in there. You seem to have very good ideas and keen observations and your mother needs both as doctors just do inadvertently miss things ( as do we all).

My best to your whole family.

Sasha

Hello Sasha,

Thank you for taking interest in my thread and our situation. It sure means a lot to me. I am hoping now that we are seeing a specialist that we will be exposed to and receive extra care that simply is not possible at our local level.

As soon as I have more information I will be sure to report it to the forum.

Best Regards,

Matthew R. Smith