Hello All,

I just got back from Las Vegas on Friday evening and thought it would be a good idea to post an update.

Laura - to answer your question regarding the "fade out" period, yes, my mother does experience that.

To summarize the original Rx plan the neuro recommended:

My mom started on a 30-day supply of the Carbidopa / Levodopa 25/100. Once this Rx ran out, my mother was to mail-order a 90-day supply of the same medicine.

At the same time as the 90-day of the carbidopa / levodopa was mail-ordered, a second Rx was either written and/or mailed-in for the "ER" (extended release) version of the medication. I believe the dosage, 25/100, was to be the same for the ER as the regular release.

Long story short, the mail-order company got some "wires crossed" some where and we ended up with (2) 90-day supplies of the ER pills. It took a day or two for my mother to realize this, but after a few phone calls, we now have an Rx for both the IR and the ER. I believe that the instructions are to take 1 pill of the IR and 1 pill of the ER at the same time, 3 times a day. Does that sound correct?

That is where we are. At lunch this afternoon my mom wrote out some checks by herself (to pay bills) so she obviously felt up to doing that. I typically handle this for her when I come home on weekends. As I mentioned earlier in the thread, I noticed the small improvements such as the incresae in personality, strengthened voice, etc. I am really hoping that when she starts to take the IR and ER that the mobility in the legs will start to come back.

Does anyone else have any experience or comments regarding increase in mobility after the combination of IR and ER?

Thanks for all the continued support.

Matt

Hello All,

I just got off the phone with my mother and decided to post an update.

As I mentioned in the previous post, the medications that she is supposed to be on were finally "figured out" as of last Saturday morning, meaning that she had the correct medication in her posession as of last Saturday morning.

Since last Sunday morning, she has been taking three (3) doses per day. Each dose consists of one (1) of the IR Sinemet 25/100 and one (1) of the CR ??/???. I spoke to her twice on the phone this week; just a few minutes ago, and on Wednesday evening. Both times she did not seem very social, and her voice sounds extremely weak, much weaker than it sounded when she was taking only the Sinement 25/100. Also remember that during the medication "mistake" she had been taking only the CR three (3) times per day (or so I believe).

I have not physically seen her since last Sunday, but I am wondering if she is taking too much medication and it is having the opposite affect as it is supposed to. Again, I am only judging this based on the weak sound in her voice, and unfortunately I have not seen her since last Sunday.

Is it possible that she should have slowly migrated to the three (3) doses of both medications per day, as opposed to jumping right into the three (3) does of both medications per day?

Thanks,

Matthew

Is it possible that she should have slowly migrated to the three (3) doses of both medications per day, as opposed to jumping right into the three (3) does of both medications per day?

My guess is either she has gone too fast onto the greater dose, which could possibly mean she is overmedicated, or perhaps overwhelmed by the sudden increase in dosage, OR, that if the actual medication is different, which is not clear from your post, as in it is branded differently, or a change from generic to branded or vice versa, then this could change things, due to differences in the way tablets are formulated, making dopa more or less available. She could also, with increase in meds, be experiencing excessive sleepiness which might make her sound different. If possible ask for advice on this from her neuro, balancing meds is always a trial and error thing, and a sudden doubling of daily dose may just be more dopa than she needs.

Good luck with helping you mother sort this out, it seems she is responsive to meds and over time you may see more improvement.

Lindy

Lindy

Hi Lindy,

Thanks for the reply, and I apologize for the confusion in the medication. I have been reading so many other posts and people mention the medication "Sinemet" that I simply assumed that my mother was using it also.

To clarify, I just read and wrote down the names and dosages of the medications my mother is currently on:

1. Carbidopa / Levodopa 25/100 (which is a substitution for Sinement 25/100)

2. Carbidopa / Levodopa ER 25-100 (which is a substitution for Sinemet CR 25/100)

She takes one each of the above, three times daily :: breakfast, lunch, dinner. So, a total of 6 pills per day.

I read the above directly from the bottles.

With this in mind, I have a few questions:

1. Is there a true difference between the Sinemet and the Carbidopa / Levodopa, as I interpret from your post that there may be?

2. Is it safe to assume that ER = Extended Release and CR = Controlled Release, and that Extended Release means the exact same thing as Controlled Release?

3. Is it safe to assume that "25/100" is the exact same thing as "25-100", the only difference being the "forward slash" versus the "dash" between the "25" and the "100"?

4. When I read other posts and see the term "l-dopa", is it safe to assume that "l-dopa" is the same thing as "Levodopa"?

After being with her this weekend, I still honestly feel that she was doing better and showing more improvements while she was on ONLY number one (1) listed above in the medications. Her voice has gone back to sounding as weak as it did before she started any PD medication. The personality in her face and general being has, in my opinion, decreased since she has been on BOTH number one (1) and number two (2) above. She has been taking both number one (1) and number two (2) above for seven (7) full days as of today.

Might I be jumping the gun in forming conclusions that my gut instinct tells me that she is on too much medication at this point in time?

Is it frowned upon to experiment and stop taking number two (2) above to see what happens, or should this only be done at the recommendation of the neuro? Is it considered acceptable to call the neuro and ask my previous question as opposed to continuing the take both medications and wait until the next neuro appointment, which is the first or second week of April?

Thanks,

Matthew

Hi, haver added info into your text.........

Happy Easter to all.

Lindy, thank you for the last reply. I just realized that I never got around to replying to you.

Since I am home this weekend I figured I would post an update.

My mother is still taking the IR and the CR, three times per day. My feelings are still the same regarding her present state, as I mentioned in my previous post. I feel she lost some of the gains that she realized while taking the IR and the IR only. I was talking to her yesterday, and she asked me if I thought her voice sounded funny. I told her that I felt she was making much larger strides while on the IR only. She responded by telling me that when she was on the IR for the first week, she felt much better than she had, prior to taking any medication. Then she said the next week she felt a little worse, then by the third week she said she felt no benefit. She describes her experience while taking the IR and the CR as being the same. She felt some initial relief, but now it is gone.

Our neighbors came over last Saturday to chat for a bit. They had not seen my mother since around Christmas time. They said that they noticed a remarkable improvement in her physical appearence, the strength of her voice, and her ability to construct sentences and participate in general conversation. They mentioned that around Christmas time, they felt that my mother really had to "think" before making a statement, and that sometimes she struggled to find the words to say. I had also noticed this at one point in time, and now that I am bit more educated on Parkinson's, the idea of thinking a bit more slowly closely relates to the brain attempting to send messages to the legs and arms, but the messages being delayed in their arrival.

Lindy, you touched upon my question regarding the possibility of being over-medicated your previous response. Our next neuro appointment is the 26th of April. Does anyone have any specific experience with being on too much l-dopa at one time? If so, were the symptoms such that there was really no relief from the PD symptoms? They always say that too much of "anything"is not good, and I wondering if that statement holds true for PD patients and their l-dopa.

Thanks,

Matt

Hi Matt,
Happy Easter to you and to your mom.
To answer your questions about too much and too little l-dopa - this is the theory as I understand it, if you take too little you are under medicated and the symptoms don't go away, if you take too much you could get symptoms very like PD emerge, and if you get it just right it should help....... it a goldilocks thing! However it isn't totally straightforward as depending on progression and duration of PD it can help more or less........ so the only thing to go on is if there is improvement, rather than the opposite. This may not all be apparent to the person with PD, for instance, they may always have thought they were smiling, and not realized that the smile was not visible to others, or they may have thought their voice was loud enough because it felt like enough effort was going into the talking......

If your mom is feeling and functioning better then is is probably visible, and your neuro, who won't have seen her for a while, is likely to be able to see that change. Good luck with the appointment,

Lindy

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