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MarcB

Dr., what should I do? "Your guess is as good as mine."

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MarcB    17

This, the most common answer, " When assessing whether someone should start medication at the onset of diagnoses or the onset of symptom severity, it is completely up to the patient." is very frustrating because at the time of diagnosis, pwp know zero.  "Your guess is as good as mine."  It's like asking a six year old if they want deep brain stimulation -- or, for that matter, if they think they should take sinemet.  This non answer can only mean the studies have not brought the jury in on this, the central question, otherwise, how does it happen that the PD healthcare community takes opposite or no position on this issue? 

 

Edited by MarcB
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MComes RPH    178

Marc,

I do understand your frustration. Many of the good Neurologists and Movement Disorder Specialists usually ask very pointed questions to determine if you should start on medication. Since they are not in your body and do not see you 24 hours a day, They may ask you for your input. The main criteria that would separate whether or not a Dr would start a new young onset patient on medication is, "how much are your symptoms affecting your quality of life?"

If the patient states that the symptoms are having very little affect on their quality of life, then medications probably will not be prescribed. If the symptoms are affecting the patients quality of life, the Dr will ask a series of questions to figure out what medication to start with based on the symptoms. Like I said, that is what good Physicians do. If you are not satisfied with their answers, then you may want to look into a second opinion.

I am now 49 years old and was diagnosed at the age of 30. I have probably tried every possible medication regime available.  It was a second opinion that I sought out who confirmed the diagnosis. The first Dr actually said to me, "You are too young to have Parkinson's Disease and I believe you have essential tremors." I guess that me being a pharmacist and knowing the difference between the 2 ailments lead me to seek a second opinion. Even after that second opinion and started doing public speaking, I still asked Neurologists and Movement Disorder Specialists what they thought of my situation. All, yes all, agreed that it was Parkinson's disease.

Once the diagnosis is confirmed, the patient is truly in the driver's seat as far as there medication therapy is concerned. By this I mean that you have to be completely transparent with the physician. This can start with keeping a good journal. Even if you are not on any medication and have been diagnosed with PD, you should always keep a journal. This journal should be done daily and consist of any symptoms you may have, what time of day they happen, what time you eat, what you eat, any situations that may surround when the symptoms occur, is there anything that may decrease or increase the severity of the symptoms, and are the symptoms progressing. These are just to name a few. When this is done on a daily basis you may see a trend as to when symptoms seem to be occurring. This is also a great tool for your physician to decide if to start medication, what medication to start with, and at what dose the medication should be started at. This is where I say you are in the drivers seat. At this point keeping a journal is imperative. In this journal journal you will have the medication name, the strength, the time you take it, any "off" times you may experience in relation to the medication, and symptom relief. If it does come down to you having to start medication therapy, if you look on the main page of my Forum "Ask the Pharmacist" there is a medication schedule that you can download and fill it out on a daily basis. This is great information for the Dr. when you have your appointment.

I do understand the frustration you feel and anyone who has Parkinson's who says they don't would be lying to you. It is a very frustrating disease, but with the right Physician and the right tools it could possibly make it easier for you to handle.

I hope this helps and please keep me posted.

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MComes RPH    178

Marc,

No problem. I'm glad I could put some things in perspective.

I'm glad I could help but please keep me posted.

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Justin898    0

Dr. I understand from above that if the quality of life of a patient is un-altered, medications would not be prescribed. For a patient in this stage can rigorous or the so called boxing techniques be helpful??

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MComes RPH    178

Justin,

Absolutely this can help. It has been sown that exercise can actually delay some symptoms of Parkinson's. Also, when someone who already has symptoms, starts or keeps up with some sort of exercise regime it has been shown to maintain the state the person's symptoms or even improve there physical symptoms. Because Dopamine basically co-ordinates your muscles, if you keep those muscles toned and active, you are actually helping to stave off some of those muscle symptoms.

I hope this helps and please keep me posted.

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otolorin    25

Hi Pharmacist,

I am very fascinated by your post above.Would you want to share your experience concerning the medications you started with after diagnosis,the negative and positive responses with these medications and your current medications.Have you ever tried,or are you currently on C/L therapy?If so how long have you been on C/L and how best can one avoid levodopa induced dyskinesia?I always find your responses to be very inspiring,being a pwp and a pharmacist.

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MComes RPH    178

Otolorin,

Wow! I have never been asked that question, but without looking back at my many books of journal entries, I can give you the order of the medications and the reason I went off of them. Unfortunately, since it has been 19 years, I am not able to give you exact time frames on each regime. I can only give you approximate time frames.

I saw my first neurologist 4 days before my 30th birthday. He diagnosed me with essential tremors. After 5 years of medication changes, which the last medications I was on were Klonipin 10mg per day, Paxil 160mg per day, and Mysoline 2,500mg per day. As a pharmacist I knew those were high doses, but I also knew that high doses may be needed to control the tremors. Also, Mysoline breaks down in the system to Phenobarbital. That regime lasted 1 week because I was going into toxicity of Phenobarbital. I went and saw the neurologist again and asked if it could be something besides Essential Tremors since the medication regime is not working. His reply was,"Do you really want to have Parkinson's Disease?" Now i never mentioned that to him, so I knew that was a point for us to part ways.

My second, and current, neurologist I saw 4 days before my 35th birthday. Very ironic, but very different. He diagnosed me with PD and later told me he could tell within th first 10 minutes that it was PD.

So here is where my medications travels began:

Started with Mirapex. Increased dose slowly to 1.25mg three times daily. I need more help at night due to off times, so we just increased the nightly dose to 1.5mg. Just that small increase threw me into severe OCD. It was OCD with work. I also had spontaneous drowsiness. I could not shut my mind off, so we changed meds.

Azilect, Amantadine, and Baclofen came next. I had great success with the combo for about 3 years. The Baclofen was added on because Dystonia started to become a worsening symptom. At about year four on the combo, The Azilect and Amantadine did not cover the ever changing symptoms.

At this point I changed to Neupro and had a 16 lead spinal cord stimulator placed in my back to help with the Dystonia. It was an idea that my pain specialist and I came up with. These stimulators are usually used for pain and use electrical impulses to control pain. After some research, I realized that they have been used , in small units of 1 to 2 leads to control spasms. The impulse of electricity confuses the spasm and calms the muscle down. Since Dystonia is much different than a spasm and is much more intense, we had to use 16 leads that went from the lumbar region to the thoracic region length wise, and from my spinal cord our to the right side of my back. I had mostly right sided Dystonia that was all over my back, so they were placed on the effected muscles. I was put under, a lead would be placed, I was pulled back out to see if it was in the correct spot, and so fourth. It was a 4 hour surgery that, even at present time, was the first and only one done in he world. Without it I would be in a wheel chair by now. As far as the Neupro, it was slowly increased to the max dose. Three days after the dose was increased I had spontaneous drowsiness. So we go back into the bag of tricks.

The next path was Stalevo. I was very excited because it was basically Sinemet with Entacapone (wich was used to lengthen the time of the C/L. Once again we slowly increased the dose and changed some dosing times, but was still not able to rid myself of off periods. I was on Stalevo for about 3 years, and then it was time to change.

This was when I switched to the Sinemet IR and ER. While we slowly increased the dose and played with the timing, we had a winner. I took 2 Sinemet IR 25/100 at 8:00am to kick start my day. An hour later I took one Sinemet ER 25/100 (which was eventually changed to Sinemet ER 50/200). Then I took an IR at 2:00pm and at 9:00pm. I followed that with an ER at 3:00pm and 9:00pm. I took the IR one hour prior to the ER to rid myself of any off period that may happen of the last ER dose. Life was great. Then I heard about this new medication coming out and knew I had to try it. Like most of us, when something new comes out as far as Parkinson's medication goes, we have to try it because it may be better than what we have at that moment. So I changed

This time I was excited about the possibility of this new drug call Rytary to cure all that ails me. I have heard such great success with it, and still do today, but it was not for me. It seemed like the conversion from Sinemet to Rytary led me to start on a dose that was too high, I started to immediately have dyskensia. Now, after hearing from many patients and Dr's, many of them are seeing what the conversion amount is and dropping down to the next lower dose to avoid Dyskensia. I did step down my dose and things were ok for a few weeks. The one thing, that no matter how I timed it, I could not rid myself of off times while on Rytary. For a short period of time I did try Sinemet IR with Rytary, but that only created more issues of off times and dyskensia.

Now to the present time, about 19 years after my first visit to a neurologist. I am back to the Sinemet IR and ER combo. 2 IR  25/100 at 8:00am, 1 at 2:00pm, and 1 at 8:00pm. I also take 1 ER at 9:00am, 3:00pm, and 9:00pm. Occasionally i may have to add one or 2 IR's throughout the day depending on stress, fatigue, workout, or just eating at the wrong time.

There are many stories happiness, sadness, pride, success, failure, etc... over the past 19 years, but I would not change a thing. I am actually working on several different books at this point, so someday you may get a better look into my life as a whole with PD. You never know.

I consider myself one of the luckiest people in the world.I am a pharmacist who has PD. What are the odds of that. I am able to use both my personal and professional lives to help people on this forum, Which is one of my most satisfying aspects of my life. Believe it or not, this is very therapeutic for me.

I have all of you to thank for it.

Godspeed and STAY ALIVE!

~Mark, your Pharmacist

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otolorin    25

Dear Pharmacist,

I  am sorry for my questions about your journey with PD,if you found it too overwhelming.I felt like asking you these questions because of your knowledge of pharmacology in general,  specifically with PD medications,and a Pwp.I am highly impressed that you took time to give detailed information as regards the effects of  your medications.Your story is so inspiring that you even tried spinal cord stimulator surgery to control muscle spasm.I recently asked my motor disorder specialist about the use of Baclofen to control dystonia,but he said,it would be ineffective.Also what are your thoughts about nicotine being neuroprotective and marijuana in treating dystonia.

Thanks for your usual support.

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MComes RPH    178

Trust me, there are no tough questions to me. I am glad that I have all of you friends on this site and that I am able to help you in any way that I can. I do not regret anything I have been through and I realize that I have Parkinson's for a reason. That reason is to help everyone I can by moderating this forum, public speaking, and holding medication seminars.

I have read the studies about Nicotine being neuroprotective, It does sound promising, but I really have to more studies with larger subject groups. As far as the use of Marijuana (or THC) helping to treat Dystonia, the jury is still out. I believe there have been great advances in THC therapy in PD. People are using it for dystonia, tremors, walking, and sleeping to name a few. But once again it comes down study groups and larger study groups. With the politics around marijuana, it may be a while before we have the type of studies we need. I do believe there is potential for THC use in PD.

I hope this helps and please keep me posted.

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