medication - my opinion

Meds are expensive. Meds are a vicious cycle. Meds do not cure or prevent progress. Meds are effective for five years then other meds are necessary. Each med has or causes nasty side effects. Other med are prescribed to treat side effect. Each additional med has side effects which in turn require more meds. That causes patient to consume many different meds.

39 Replies

oldestnewest
  • Nope Roy, I say some true some not.

    For a start meds are not expensive for most of us, for instance I pay 50dollars US a year (the rest is paid through regular tax).

    Meds are effective 5 years? What meds and who says, what about all the people on here who have written that they still work for them way beyond five years?

    I don't take meds to treat side effects of meds, and except for reflux medication and sleeping pills which may or may not be problems caused by the meds nobody I know does. what side effects are you meaning?

  • The typical med side effects.

    Excerpt of a response to my medication opinion from my friend in UK:

    “i agree as regards meds; luckily here you get reviewed again free; annually or more regularly. certainly the patient themselves know their bodies better…….... i truly believe in our NHS especially for those with chronic conditions; the govt however is determined to squeeze the NHS so it fails and will allow private companies to take over. it's up to the people now to fight. I wish for some changes there and pray for more strength for you and wife.....heart emoticon”

  • Hi Hikoi. Don't you think that if you paid for the meds, as we do, you might take a different view of the cost of those meds?

    I think that because most people think as you do about the tremendous costs of meds, that the pharmaceutical industry can raise the prices unjustly?

    Just a thought!

    John

  • Sorry John I missed something here. Don't follow.

  • Hi Hikoi. I was commenting on your response to RoyProp.

    John

  • I thought that the gold standard Carbadopa/ levadopa was proven not to wear off after 5-7 years. It is fairly inexpensive. and doesn't have alot of side effects or precaushions to other meds like Azilect and some of that class does. Our most expensice drug is requip which is 400.00 for 90 days, our co-pay is 40.00 but the full amount counts againt medication tally for insurance and the donut hole.

    Constipation, and leg cramps and muscle pain. Try magnesium.

    Alot of over the counter meds/herbs/supplements have side effects too. Some of those cost alot more than the PD medications we take. Not everyone wants to watch every bite of food they put into their mouth, or how many times/minutes a day they exercize.

    You feeling down today RoyProp? Put on some music and dance. The sun is shinning and you are alive .I know that sounds very trite and I don't mean it to. You are normally a up type person.

  • Constipation is a common complaint found with most common side effect with most allopathic medication. However drinking water on an empty stomach has helped me. I take about 1.2 Lits of water (40 oz). At start if you find it difficult to consume all start with 10 oz and increaase. You will soon find relief

  • Hi Kanu Kamdu. I agree! But there is another side to the constipation story. I have found that the sphincter in the rectum does not relax when we try to defecate. I have to massage it, when I know I need to defecate, and as it releases, while I am pushing down hard, then I am able to defecate every day. The water does help a lot, making the stool a lot softer and easier to pass>

    John

  • Hi JHD. Are you serious? Who wants a photo of me defecating?

    John

  • RoyProp, you seem to be confusing medication in the UK with politics. The NHS, education, welfare benefits national transport, taxes etc are permenant political footballs but that doesn't mean that the spin anybody puts on the discussion is true.

    If you research the lives of people with Parkinson's before levodopa was discovered and now and you will see what good they do.

  • I guess the insight you are looking for is that if you don't like meds, don't take them. If you don't understand them, don't take them. If you prefer to suffer, don't take them, but whatever you do here or with your opinion, as you say, make sure to be careful to not influence people who truly need meds due to your misinformed logic.

  • PD is not nice! Full stop. Our Meds help us cope with PD so I'm grateful for them despite their limitations, expense and sideffects.

  • Royprop, I have been on the same carb/levo 25/100 for over 25 years. I do take a lot more than I did when I started because my PD has progressed. When I first started on this drug, or any drug that I take, I ask for the least amount of mgs to start. I can always increase to a higher strength. You are right, all drugs have side effects. It's up to the patient to decide whether taking the pill is worth it. But always take the least amount you can get away with. By the way, when my neurologist asks me how many doses I take in a day and I answer "I skip a dose if I don't need it" she is not thrilled. I don't care. I know what will happen if I take too much. dsykenesia!

    Amount I need varies because if I don't eat protein they work better. For some reason, protein interferes with the meds.

    I'm not saying don't listen to your doctor. Just be aware that they don't know everything. After all, they don't have PD.

  • Hi Jocee. If you eat protein within an hour, before or after taking medication, it competes for the Ldopa in the gut, which means you get less Ldopa into the brain. Google Foods containing protein and see which foods to avoid when taking medication.

    John

  • Thanks, John. I didn't know that..... :-)

  • In general, I'm not in favor of taking drugs if you don't have to. However, with PD, taking Cardopa Levodopa IS a good idea. True dyskinesia can be the result of long term use of the drug. However failure to suppress PD symptoms leads to inappropriate or lack of use of muscles that accelerate the process of how you use muscles, so the symptoms of PD progress faster.

    The "side effects" of Cardopa Levodopa (for me) are a slight feeling of nausea first thing in the morning.. hardly a thing to worry about.

    I think the best approach is to use "the minimum amount" of Cardopa Levodopa you can, and I have reduced my need by 30% using LDN.

    LDN (low dose naltrexone) has absolutely NO adverse effects and costs the princely sum of $24 per month.

  • I agree with your general feelings to avoid medication when possible but everyone has their own PD and their own demands on their lives. If you are working at a job and you can't fulfill the requirements of that job without meds, then you have difficult to impossible choices. Of course if you have late onset and are retired there's lots of wiggle room to experiment. The thing is try everything first and approach meds with moderation and needs basis.

  • I should have added:

    1. Some neurologists recommend delay the start of meds.

    2. When dx my neuro prescribed Neupro patch.

    3. When dx Neupro price was $100 per week.

    4. After study, which I continue today, my choice was and is to delay taking meds until symptoms are intolerable.

    I am so thankful for the sounding board here at HU and to all my HU friends and their support and advice. Even when some express displeasure with my opinions and displeasure with information I find then share on this forum, I remain thankful with respect.

    Presently I am fast walking, one hour, 4x / week. Resulting in "10% improvement".

    My wife says I appear stronger. I notice that when I walk my arm now swings as it should. Small improvements are acceptable. As for my other symptoms, no telling if walking has affect. I have nothing to gauge or compare my condition / progress of this disease. So many other PwP are in a condition where they need multiple meds starting as soon as they are diagnosed. I count my blessings and hope for the best that I can maintain as long as possible.

  • I agree with your original post on meds. Can I ask you some personal questions about your position Royprop? Am I correct in thinking from what you have written that you are not taking medication? And presumably, never taken PD meds? How long is it since you were diagnosed? I succumbed six months ago after five years resisting Ldopa. Have you considered what level of limitation you might accept before you give in and take meds? Or do you think with fast walking you will manage to keep going med-free? ( I'm fast walking and am trying to reduce my meds.)

  • not taking medication

    at dx I was given sample of Neupro. After three days, no more applied.

    See my other Posts and Replies of the time I wasted earlier on various diets and potions. Like everyone, desperate and reaching. I did Reply in recognition of the chiropractor quack. I did not fall for that.

    I do not recommend the Theracycle. I do recommend recumbent exercycle and the various forms of exercise mentioned elsewhere on HU/Parkinsonsmovement.

    12/2012 diagnosed

    I do not know what level/cond. Time will tell. I can still take care of myself, slowly.

    I think I have tremor dominant form, doing well. Compare that to PIGD form that disables much earlier.

    Honestly, I put little faith in fast walking doing anything dramatic (cure, remission, 100% improvement) toward my symptoms.

  • I am having difficulty.

    Change "Presently I am fast walking, one hour, 4x / week. Resulting in "10% improvement".

    TO

    Presently I am fast walking, one hour, 4x / week. Resulting in "5% improvement".

  • Hi RoyProp. This is music to my ears! I would suggest that you reduce the fast walking to 3 times a week, to avoid muscle damage. 10% improvement is much better than gradually getting worse, which is what happens when you only take medication. Keep up the good work and it will pay off BIG TIME!

    John

  • Presently I am fast walking, one hour, 4x / week. Resulting in "10% improvement".

    At this rate, in another 9 years I will reach 100% improvement and have caught up with JohnPepper.

    I will keep you all informed of my progress, results and prognosis.

  • I am having difficulty.

    Change "Presently I am fast walking, one hour, 4x / week. Resulting in "10% improvement".

    TO

    Presently I am fast walking, one hour, 4x / week. Resulting in "5% improvement".

  • I could not disagree with you more. I have been through the mill with two DBS surgeries, medication trial switches and 5 neurologists. Yes I have had "cry days"

    occasionally, I need them. A major symptom can be depression. Find a good counselor

    and work it out with he or she.

    Have strength, my friend, and a positive attitude. It will work wonders.

  • I couldn't disagree more. It's all in your attitude. You can beat this in your own way if you don't let it get to you. I have had two DBS surgeries, and 5 neurologists. Parkinsons manifests in different ways: my grandfather had a classic case; my mother had periodic depressions, and I have "a nasty mix of Dystonia and Parkinsonism" in the wise words of a neurologist that I respect. I have "cry days" and I allow myself to have them----it helps.

    But I pick myself up by my bootstraps and soldier on. Get a good counselor, it will help. If you want to talk, let's set a time up and hopefully it could help.

    Good luck!

  • Aren't you just a ray of sunshine. That's just the kind of thing we don't need to hear, especially when it's not even close to the truth. I was diagnosed three years. Started out on Requip, carb/leva and Azilect. I exercise on a regular basis, have not had to increase my dosage, insurance pays for just about all my meds, small copay, and no side effects. Last time I saw my neuro he said that if he didn't know I had PD he wouldn't be able to tell. PD has definitely changed my life but, I wouldn't necessarily say it's been for the worth.

  • it is not always easy to hear other people's honest reports of their experience with Parkinson's and their opinions.

    Some people seem to breeze through their day and that makes people who are struggling feel bad. Others report poor symptom control, relationship problems, side effects etc. these are difficult to hear but they are valid.

  • I would not be able to walk without sine met.

  • Some are helped by some drugs, and some drugs are less destructive than others. I have been on most of the PD drugs and I am off of all of them now. I would rather be symptomatic and cope with it, using diet, exercise, tai chi, and counseling. I am not "woo-woo" or anti-science ( I worked as an editor/admin for a critical thinking site).

    I simply found the drugs worse than the disease. Lookin' at you, Azilect, EmSam.

    Roy, I note your simple declarations are essentially observed and objective statements. You resist hyperbole; except perhaps in the blanket statement that "Each med has or causes nasty side effects." This is not entirely true for each drug nor for each user. I believe your aim is true tho: MOST do. And it is a cycle of increase and pursuit, vicious or not.

    A sizable percentage of classic PD patients, upon autopsy, are shown not to have had PD. This and other troubling aspects of the relatively crude state of movement disorder science should give each of us pause. This is an excellent forum for expanding one's perspective.

    Some of the aspects of movement disorders are more livable than I first thought. Physical therapy and tai chi gave me techniques for walking. Counseling helped me to break "negative feedback loops" that exacerbated shakes and tremors. So far, I am MUCH better off without the drugs (1.5 years) and I am ME again, psychologically and behaviorally.

    Movement disorders have profoundly increased and deepened my compassion for other people. If anything I write here offends or troubles you, I do not intend to. I support using medications in a moderate and careful way. To each their own.

  • Now a pause for a "ray of sunshine".

    Is it time to be more lighthearted and enjoy life?

    RoyProp’s daughter’s comment after viewing this Video:

    “Oh my gosh! Their marketing manager must have met Dad. I would be asking for payment for using you as a muse. Lol”

  • Very good

  • RoyProp, I am a bit concerned about your posts. I understand and share your frustration and disappointment with doctors but it may also be that in our condition we are not the best people to be making the kind of life changing decisions that you have made. For example We know enough not to represent ourselves in court because we are not lawyers but you have determined what your medication regime will be and I question your position as a PD medical professionally trained adviser.

    This statement that you made most concerned me. "After study, which I continue today, my choice was and is to delay taking meds. until symptoms are intolerable." You remind me of an old friend who has taken this same attitude towards retirement. In truth he does not need the money but he can not stand the thought that he could still be bringing it in so he refuses to retire and is now 67 and commutes 150 Kilometers twice a day. He is quickly going downhill and I suspect that he will be dead soon or forced to spend his short retirement years recovering from a stroke.

    Medication may help to maximize the exercise that you can do and add more quality to your life and the life of your family and avoid depression etc. The usual cause of death for people with PD is Pneumonia, usually from aspirating food. The average stay in hospital during this last final visit is less than 3 days. Just make sure your condition is not only intolerable but is recoverable but I submit that it will be a sorry state and too late. I think it is time for some fun RoyProp, time for you and your family to do something memorable and shake these blues because you are on a slippery slope, a slope that gets steeper and faster the farther down you go. Talk to a Professional.

    Be Happy .

  • I truly appreciate your looking out for my welfare.

    Neurologists have the opinion that waiting to start a medication regimen will do no harm.

    In past posts I also addressed how PwP face death. You wrote "The usual cause of death for people with PD is Pneumonia, usually from aspirating food. The average stay in hospital during this last final visit is less than 3 days." I received a lot of hateful replies when I wrote similar Posts.

    I am not depressed. It is difficult to find subjects or topics that do not depress. But I for one want to face reality. Be prepared. Plan my future.

    Neurologists have the opinion that medication only treats the symptoms.

    Unless necessary before hand I plan to see my neurologist after the fifth year from my diagnosis. Neurologists may give prognosis after a min 5 years.

    I have informed my family doctor that I want him to manage my treatment.

    Happy news, hopeful news. See my earlier post regarding potential cure for Parkinson's. May just be "around the corner".

  • Reading about this potential cure made me very happy. They certainly are optimistic and self-assured.

    "Despite great efforts from pharmaceutical companies and academia, no one has managed to find a molecule which can directly bind to it and activate it, except for us," said Professor Kwang-Soo Kim from Harvard's McLean Hospital.

    Harvard-Singapore team unveil potential Parkinson's cure / 15 Jul 2015

    A team of international scientists announced a medical breakthrough in Singapore on Thursday that could improve millions of lives: existing anti-malaria drugs have the ability to treat Parkinson's disease, according to new research by Nanyang Technological University (NTU) and Harvard Medical School's McLean Hospital.

    After screening over 1000 drugs approved by the U.S. Food and Drug Administration, the scientists discovered that chloroquine and amodiaquine—two common anti-malaria treatments—could bind and activate a class of proteins in the brain vital to fight Parkinson's. Called Nurr1, these proteins protect the brain's ability to generate dopamine neurons, which are essential to the body's movement of muscles.

    "Backed by various lines of scientific evidence, Nurr1 is known to be a potential drug target to treat Parkinson's. Despite great efforts from pharmaceutical companies and academia, no one has managed to find a molecule which can directly bind to it and activate it, except for us," said Professor Kwang-Soo Kim from Harvard's McLean Hospital.

    The scientists are now aiming to design better drugs for the disease by modifying chloroquine and amodiaquine with the hope of carrying out clinical trials soon.

  • I may have over reacted, I did that once before. I have also turned management of my treatment over to my MD. I also believe that only symptoms are treated by the medications but I do not see that as reason to discontinue taking them . Talk of the end game usually upsets those in denial but I know that you are realistic in your posts. I brought it up because you seem to be saying that you will be able to determine the exact time when you will resume your medication, but I fear you might miss it by a few days. Even in your response I still sense a sadness. I may be wrong.

  • My son says over reacting and reading (interpreting) the worst from written communication is the norm for most everyone.

    There is no resume medication as I never started. When first diagnosed my doctor (neuro) prescribed Neupro patches. Which I wore for only three days.

    I like to think the neuro wanted to confirm his diagnosis with a report from me that the patches worked against the tremor.

    I actually think the neuro, like most others, find it too easy to quick to prescribe medicine. They think the patient will think less of them if on the other hand, they do nothing.

  • Ahh You are at the very beginning stage and unconfirmed with only tremor. Yes of course you can delay taking any PD medication. You may need to attend to a few things like dry mouth , dry eyes and constipation but these things also will be at a minor stage but it is still a good time for planning and evaluation of preparedness. Build an aggressive exercise routine and try to stick to it and that will stall the PD progression for a time.

  • Roy

    Hope you are not counting on that latest finding which you mention above. Yes it is very hopeful but it is rat models of PD. So it's a few years off being proven for humans. I think you might be 18 months down the PD path now. Delaying is ok but I do hope you know the time to start Meds, cause I do know delaying taking them doesn't necessarily delay the onset of dyskinesia. I have seen this in a friend who waited over 5 years to take levodopa and had dyskinesia within 6 months of starting on it.

    Stay well mate.

You may also like...