My PWP friends often discuss their meds: are they working or not, should they take more or less, stop completely or try a new one. According to the AMA one-quarter of all new prescriptions are never filled and patients do not take their medications 50 percent of the time. Most non adherence is intentional. People decide not to take their medicine based on their knowledge, experience, concerns, and beliefs. The main reason is fear. They are afraid of potential side effects and believe that meds cause problems. Based on talking to PWP friends I believe another reason is because doctors often don’t fully explain why they are prescribing that specific drug, the importance of taking it, the benefits of it, the risks and the possible side effects. About 75% of the PWP I know do not take their meds as the doctor prescribed. They take less, or more, adjust it to how they feel each day, or rely on “natural” remedies
Sinemet (Madopar in the EU), a combination of levodopa and carbidopa (benserazide in the EU) is used to treat Parkinson’s disease symptoms such as tremors, stiffness, and difficulty moving. PD is believed to be caused by too little dopamine in the brain. Levodopa changes into dopamine in the brain, helping to control movement. Carbidopa prevents the breakdown of levodopa in the bloodstream so more levodopa can reach the brain. Sinemet has been the gold standard drug for Parkinson’s for 25 years. It is even on the World Health Organization's List of Essential Medicines but it doesn’t work for everyone. One doctor I saw put it at 50%. It also has side effects. Reading the list is scary. To take or not to take Sinemet that is the question. The easy answer is if it works for you take it. If it doesn’t don’t. So the real question is how to tell if it works for you and is the risk of possible side effects worth the benefits.
A friend was recently prescribed Sinemet by her doctor. She was diagnosed with Parkinson’s three years ago and has worked hard with alternative therapies to control her PD. She has a noticeable tremor in one hand and is having trouble sleeping. She seems fairly healthy and happy but when she told her doctor that it was getting harder to perform daily activities like dressing and caring for herself he suggested she start taking Sinemet. Now she finds herself looking at the bottle and trying to decide whether or not to start taking the pills.
Her first thoughts are I don’t want to have to take this for the rest of my life and she is worried about the possible side effects down the road. After a month of indecision she says she will give it a chance and see if it improves her quality of life but is waiting for the right moment to begin. If there isn’t noticeable improvement after a few weeks she will stop.
Three months later she finally pulled the trigger and started taking Sinemet and became dizzy and confused, lost stability and stumbled, and wanted to stay in bed and sleep all the time. She contacted her doctor who replied, “Sounds like you feel worse on the drug, not better. Sounds very predictable, so I would stop the carbidopa/levodopa. Unfortunately some people have this "sleepy dopey" effect. Often likely associated with blood pressure drops.” To which she says, ”So I am free!! I feel like I dodged a life sentence and can get back to my alternative efforts. I was so deliriously happy, I stayed awake all night on a high of joy!! Now when I droop, I can't blame meds!! Also will need to get more disciplined overall since meds don't seem a viable fall back position. Oh well!!”
Another friend has been trying to decide whether or not to increase her Sinemet because her tremors have gotten worse. Her neurologist said she should take as much Sinemet as necessary to keep ahead of the symptoms but she is worried about the side effects specifically the dyskinesia. She finally decided to increase her dose because “all I have is now and I want to enjoy my life.” She sees it as if she is deficient in an essential nutrient that Sinemet supplies much like taking a vitamin pill for a vitamin deficiency. The increased dose is helping her tremors, she feels stronger, is more energetic, more able to participate in the day so that she is much happier and at times even forgets she has PD. She “loves” the improvement.
I was prescribed Sinemet but didn’t take it for the first three years. The disease developed slowly until I didn’t feel well. I then took it for a year but the PD seemed to accelerate and I wondered if Sinemet was making it worse. So I periodically take less or stop for a short time. I shake more when I stop, my body feels stiff and aches, and I am not as steady, but strangely I feel better over all and I am not sure if the discomfort is due to PD or due to coming off Sinemet and trying to kick the Sinemet habit. I discussed this with my doctor and he said that I should be taking more not less. It’s not that Sinemet is less effective over time, the Parkinson’s gets worse. I increased my dosage but didn’t feel much better so went back to taking less and I feel okay. So is Sinemet helping me or not? Sometimes it it helps with my symptoms and gives a mild feeling of well being but does it cause additional problems? The answer should be easy. Just follow your doctors advice but what if it is different for each person helping one, causing another problems, and having mixed results for a third. You think I’m confused. I know a doctor who has PD and he questions how to take his meds. So what's a poor PWP like me to do?
5 comments:
Thanks for sharing the prescription dilemma. Doctors should have the statistical-knowledge advantage, but the patients have the advantage of knowing they own particular bodies. Either could be right or wrong in a particular case. So what to do (after the second/third medical opinions, and unlimited advice from cohorts). I'm inclined to side with myself, while being open to being wrong and hoping for alternatives. But how frustrating and exhausting. Good luck!
Anonymous2
Thank you for your insightful comment. With PD we share information and are a resource for each other.
A diversion from PD to disability issues in general. Sharing info is great and I have some experience, but not with PD. In the late 70s we discovered our son was autistic, very cute but very non-verbal, with very peculiar and difficult behaviors. We had to leave our jobs overseas, change our lives. In the early 1980s the "autism community" was a broad coalition: the medical community, caregivers, parents, and the kids (much cuter than adults). Conferences were important for sharing information. In addition, we were also in a group Parents Helping Parents, and met others facing a wide variety of situations: Downs, hydrocephalus; we helped each other, especially with dealing with school districts, getting caregiver help, sharing how to deal with doctors. I was additionally in a local autistic group with more specific concerns. In the early days, my son's neurologist told me I knew more about autism than he did (I think this was true, but nobody knew much). Subsequently, a lot changed. More frequent diagnoses of autism, more parent groups, more research, more important differences developed about what to do. But I don't want to digress too long from the PD community needs in coming to decisions about those little pills. Sharing can help in decision making, and sharing the difficulties of keeping on is helpful to the spirit. Best always, A2.
The challenge for everyone with medical problems as well as their caregivers and loved ones is trying to maintain their emotional well being especially when confronted by conditions for which there is no cure. Learning as much about ones condition and being involved with a supportive community definitely helps. Thank you for your thoughts and I wish you and your son the best.
Thanks for sharing. Nice to hear the experiences of others along side yours.
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