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MComes RPH

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Everything posted by MComes RPH

  1. 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.
  2. Noah, I would just stick with the plain soda water. The reason is that any ingredient in the soda, such as ginger root in Ginger Ale or Root Beer may alter the absorption. You should be able to do the same with the Rytary because it is also just Carbidopa and Levodopa. I hope this helps and please keep me posted.
  3. By looking at your medication list, I do not see any repetition of medication classes. Each medication works on a different on a different part of the Parkinson brain, thus helping the disease from many different positions. My concern is the weight loss and medication strength. Most parkinson medications are usually based off of symptoms, but in your situation a weight loss of almost 20 pounds may require a dosage decrease of some medications. This is something you will need to talk to the DR about. I could possibly see reducing the Requip and Rytary. With the weight loss you may be taking more than you need, thus causing side effects such as dyskensia and drowsiness. This is not something I could recommend how to decrease it, because there are so many meds involved, but this is something you should talk to the Dr about. You could keep a journal with the medication, strength, time you take them, how many you take each time, and the time any untoward effects take place. once you do this for about a week or so you may see a pattern of when symptoms come about and what medication you took close to it. If you go to the main page of my forum "Ask the Pharmacist" yo will see towards the top of the questions an entry entitled "Medication Schedule." This has everything I stated above and can then be saved to your computer or printed off. If you do this daily you should see a trend of medication and symptoms. Then you can take these and either fax them or email them to your Dr a few days before your appointment. This way they already have it on hand and you do not have to waste time trying to explain to the DR what has happened since your last appointment. I hope this helps an d please keep me posted.
  4. My thinking is that the Sinement doses may be too close together, cause the drowsiness. I would try to dose them at 5:00am, 10:00am, 3:00pm, and 7:00pm. I have noticed that the sinemet doses are not equally separated by time and maybe by separating them by the same amount of time this may reduce the drowsiness. I would also try making a journal of what time she takes each medication and any PD symptoms she may be having. This way you will see a trend and be able to adjust the timing. If you look on my main forum page you will see any entry labeled "Medication Schedule." Keep in mind you must have Microsoft office to use it, but it is one of the best tools I have come up with to really help fine tine a medication regime. You can put in the medication, strength, how many tablets are taken at any specific time, and a place for any effects that may happen.This is not only a great tool for the patient, but also for the Dr. You can do this daily and either fax or email them to the Dr a few days before the appointment. This way you will not have to spend the majority of the visit explaining what has happened since your last visit. From my experience, Dr's love this. As far as changing the Namzaric to bedtime, I would not recommend this due to the issue she had previously with the Aricept. I hope this helps and please keep me posted.
  5. Market, Yes, SIBO will interfere with the absorption of Sinemet. The extra growth of bacteria on the walls of the intestine will make it difficult for the Sinemet to absorbed there, where it should be absorbed. The first line medication therapy are antibiotics Augmentin and Xifaxan. Other antibiotics that may also work are Clindamycin (Cleocin), Ciprifloxacin (Cipro, Proquin), Smz/Tmz (Bactrim, Septra), or Metronidazole (Flagyl). Doxycycline does not cover the spectrum of bacteria that is there. After it is eradicated, the Dr may try a round of probiotics also. Another thing to remember is that SIBO will also block certain vitamins and nutrients from being absorbed. It is probably a good idea to have the Dr run a full blood screen to see if anything in the blood is low, such as vitamins or red blood cells. It can be somewhat difficult to completely get rid of and there is also the possibility of relapse. After a treatment of antibiotics, which is usually 2 weeks, the Dr at that point should give you some preventative measures and a good diet plan to follow. I hope this helps and please keep me posted.
  6. 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
  7. Waywrd, I discussed with someone in one of my forums about the use of Beta Blockers (Inderal-Propranolol) for use in PD patients for those exact reasons. I thought it was with you many moons ago, but I could be wrong. Like I have mentioned in past posts, many medications (ie. antidepressants in particular) can have multiple uses besides the use for depression. They can be used for anxiety, racing heart rate, nerve pain, OCD, phobias, PTSD, essential tremors, and bulimia to name a few. Please keep me posted. I to am a thinker and one who does not even see the box. Good luck.
  8. Gene, Sorry for the delay. I explained the process in your other post.
  9. Azilect, like most Parkinson medications, should go by the method of "start low and go slow." This means that the lowest dose should be started and then slowly increased over time. With Azilect, the time frame to increase can be as little as three days to as much as one month. I hope this helps and please keep me posted.
  10. Gene, The most efficient way to do this is to use a pill crusher, that you can purchase at almost any store, crush the tablets and then put the crushed tablet in about 4oz. soda water. If you would like to make individual glasses of the mixture for your doses throughout the day, that would be fine and they would not lose potency. Only make them for that day. If you make them for the upcoming days, those can lose potency. I hope this helps and please keep me posted.
  11. 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.
  12. Waywrd, I am sorry to hear about your current situation. I know you are a fighter and will always find the brighter side of any situation. One of the things that has impressed me the most is that you are taking this step by step, organ system by organ system. That is hoe it needs to be done. If there is ant thing I can do, please do not hesitate to contact me.
  13. Yes, the price has decreased as you can see in the post above. I hope this helps and please keep me posted.
  14. It may seem that it may be a hit or miss, but most Dr's will choose the best possible medication for your situation. I hope this helps and please keep me posted.
  15. Marc, No problem. I'm glad I could put some things in perspective. I'm glad I could help but please keep me posted.
  16. I guess it needs to be treated just like any other medication. "Start low and go slow." It sounds like a trial and error issue, but it sounds like you are on your way. I'm glad i could help and please keep me posted.
  17. Marc, You are more than welcome. Anytime.
  18. C, As of yet it is not available in the United States, but when it does become available I will certainly let you know. I hope this helps and please keep me posted.
  19. About Xadago (safinamide) Safinamide is a new chemical entity with a unique mode of action, including selective and reversible MAO-B-inhibition and blocking of voltage dependent sodium channels, which leads to modulation of abnormal glutamate release. Clinical trials have established its efficacy in controlling motor symptoms and motor complications in the short term, maintaining this effect over 2 years. Results from 24 month double-blind controlled studies suggest that safinamide shows statistically significant effects on motor fluctuations (ON/OFF time) without increasing the risk of developing troublesome dyskinesia. This effect may be related to its dual mechanism acting on both the dopaminergic and the glutamatergic pathways. Safinamide is a once-daily dose and has no diet restrictions due to its high MAO-B/MAO-A selectivity. Zambon has the rights to develop and commercialize Xadago® globally, excluding Japan and other key territories where Meiji Seika has the rights to develop and commercialize the compound. The rights to develop and commercialize Xadago® in the USA have been granted to US WorldMeds, by Zambon *Information provided by the FDA Website
  20. Waywrd, As always, thanks for the update because you know I am your Pharmacist. By chance did the check your QT Wave in your heart? I have been trying to piece together some information about a possible link between prolonged QT wave and Parkinson's Patients, which can cause them to faint. as always, I hope this helps and please keep me posted.
  21. Loveya, This is a very low dose of medication and is a very normal starting position. I know that when we first start taking medication for Parkinson's Disease it can be scary. The main point I tell Physician's and Patients alike is that most Parkinson's medications should be used by a method I call, "Start low and go slow." this means that you start at one of the lowest doses of a medication, which you Dr. has, and increase it in small increments o v er time. The main thing that I would recommend at this time is that you start a journal. If you look on the main page of mt Forum "Ask the Pharmacist" you will see a topic entitled Medication Schedule. This is a great tool to help you and your Dr. help control the dosing of the medication. On this form which you can download if you have Microsoft Excel, should be filled out daily. On the form you can input the date, medication name, the medication strength, number of tablets you take at there specific times, and any symptoms (such as "off" times) you may experience throughout the day. This can then be saved and the emailed or faxed to your Dr before your appointment so the two of you do not have to waste precious time talking about what happened since your last appointment. It will be there right in front of you. Here is a little about this medication: Mirapex (Pramipexole) It is classified as a Dopamamine Agonist that works by helping restore the balance of Dopamine in a certain part of the brain called the Substantia Nigra. It can help relieve such symptoms as tremors, muscle control, stiffness, and muscle spasms. It has also been shown to be effective in Restless Leg Syndrome. This medication is usually prescribed to be taken three times a day and can be taken with or without food. It is recommended that it be taken with at least 4 oz. of water and should be separated from over-the-counter products like vitamines, supplements, herbs, laxatives, and anti-diarrheals. If you do need to take any of those products it is recommended that you take Pramipexole at least one hour before these products or two hours after taking the Pramipexole. Some common side effects may be drowsiness, dry mouth, dizziness, and lightheadedness. If you experience passing out, hallucinations, suddenly falling asleep, or muscle pain, please contact your physician because these are very rare (less than 1%) but serious side effects Some people may experience relief of symptoms quicker than others. A normal range of when you may feel symptom relief may take up to 4 to 6 weeks. Please do not discouraged by this because, as I said, It is better to start low and go slow than to start at a high dose or increase the dose by a great deal to quickly which will definitely result in side effects. If you have any other questions please do not hesitate to ask. I hope this helps and please keep me posted.
  22. 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.
  23. Waruna, After a little research, here is what I have found as far as the cash price (no Insurance) for Generic Azilect 1mg #30 in order of least to most expensive. Costco: $288.00. You do not have to be a member to fill your prescriptions there, but is you are a member the price would be $278.00 Sam's Club: $296.00. You do not have to be a member to fill your prescription there, but if you are a member a discount ranging from 8%-40% would be applied Walmart: $316.00. Rite Aid: $595.00 CVS: $649.00. Walgreen's: $750.00. As you can see the prices vary a great deal. Now these prices are from my area, which is in Michigan. The prices may vary depending where you live, but more than likely you will find the pharmacies in your area will probably look very similar to the ones posted above. I hope this helps and please keep me posted.
  24. Discovery, The only 2 interactions that could possibly occur are extra drowsiness and possible respiratory depression (difficulty breathing). If the Azilect or the CBD Oil causes drowsiness, the combines effect could be excess drowsiness. The second interaction, respiratory depression, has the same additive effect. If one or both of the products causes you difficulty breathing, using them together could cause the additive effective. I call the the "1+1=3" scenario. If both of the products causes either drowsiness or breathing trouble, then taking them together will cause the issue to be more severe. This can occur at low doses and does increase in severity if the doses are increased. I hope this helps and please keep me posted.
  25. Marc, There is only one interaction and it is minor. The interaction is between Ropinirole and Rasagaline. If neither of them cause you drowsiness, then there should be nothing to worry about. If one or both causes drowsiness, then the drowsiness could have an additive effect on your body. I call it the 1+1=3 sscenerio. Besides that, there are no other interactions. I hope this helps and please keep me posted.