There were so many interesting comments to my last two posts regarding Generic vs Brand Name Drugs. I knew when I published that post it would lead to controversy, and that is healthy. I would never steer you away from trying a generic drug, if they work for you, because they are so much cheaper. The post was merely to make you aware that generics are not always identical to the brand name. As one reader said "I think this is especially the case with drugs that work with brain chemistry and the nervous system." My feelings exactly and that has been my experience.
I was not surprised to read from some of you that you too have had problems with generics, yet they work well for others. I have had generic antibiotics, and they worked fine. It guess it depends on your own body and how the drugs react in you. We are all unique and "one size does NOT fit all." Sometimes it's the fillers they put in some of the generics that cause the problems. You might have a sensitivity to the filler.
I found this interesting article in the National Parkinson's Foundation post on the subject of Generics vs Brand Name. Too bad I didn't read this first because I could have saved myself a lot of time. They too warn against PD patients switching to generic drugs after taking the brand name PD drug. You might also find it interesting.
http://www.parkinson.org/Parkinson-s-Disease/Treatment/Medications-for-Motor-Symptoms-of-PD/Generic-vs--Branded-Drugs-for-Parkinsons-Disease
Another reader wondered if I really had/have RLS or could it be Dyskinesias (Involuntary movements provoked by medications, especially Levodopa). This one I'm sure of - It's RLS. My mother had it - long before they had a name for it and it often runs in families. At the time I was diagnosed (some 15+ years ago) I was only on Thyriod medication, an acid reflux drug, and some harmones, none of which contain Levodopa. But in researching this, it was interesting to learn that either too much or not enough Levodopa in your brain can cause Dyskinesias, which is similar to RLS only the movements are somewhat dance like and fluid, versus jerky as in RLS. My movements are jerky.
It's also interesting to learn that RLS appears in 3 to 8 percent of all the population, and may be even more frequent in those of us who have PD.
I'm happy to report that I'm back on Mirapex - and what a difference! No more RLS problems like there were with the generic version of the drug. It took a few days of being back on the Mirapex for the problem to settle down, but that particular problem is now history (until the next time something causes it to kick in).
There is so much to cover yet that I'm not sure what the subject will be next week. Guess it will depend on how much time I have to do a the research.
One final note. Some of my local friends think I spend too much time dwelling on this subject because of the research that I do. Nothing could be father from the truth. I spend approximately 2 - 3 hours a week in research and writing this post, if even that. And, I rarely ever talk to anyone about it in person or on the phone. Anyone who knows Mario from Twitter (and most of you do) you know how many things he's involved in. It also takes me much longer these days to do anything in comparison to a year ago. More on that subject later.
Until next time dear readers,
Mary
I have always been amazed at either myself or at others who "pronounce" their thought and opinion on what another person does.
ReplyDeleteIt is a human trait, I know. I am sometimes guilty of it too, but not as often I used to be as I have learned that what another person does as insofar as their interests/hobbies/research of topics and so on, is concerned is strictly governed by their comfort level and it's none of my business to decide what is too much and what is too little.
In the case of this blog and topic, you have a vested interest in learning about the condition that has so vast an effect in your life. And helping others along the way is a welcome side effect of that research. No one can say that you spend too much (or too little) time. That is your own decision affecting no one but you.
I see I am on my soapbox. xoxoxo
Hey sweetie. I'm so glad you're back on your regular meds and feeling more like yourself. Everyone always has something to say about the things we do. We know why we do them so it really shouldn't matter to anyone else. People really should subscribe to the philosophy of MYOB (mind your own business).
ReplyDeleteI guess your friends have never dealt with PD. The research you do does not seem excessive to me. And researching a disease you are living with is helpful. Whomever said "knowledge is power", knew what they were talking about.
ReplyDeleteI don't think you're spending too much time on this. I'm glad you're taking the time to find out what you need to do, what to look out for, what you need to know about your meds, etc. You have to live with this every day. So you're the only who can decide what you have to do to live with it. OK. Now I'll get off my soapbox.
ReplyDeleteLove you!
TW had a doctor recently who told her that she may not be allergic to meds, but to dyes or fillers in them. TW's old legs have started have muscle spasms that cause involuntary movement the past year or so. She thinks it's from not drinking enough water or not having enough potassium.
ReplyDeleteJust so happy you are feeling better and have the right medicines that will help you. I say kudos to you for learning more about PD! Too many people don't try to do their own research and it can be very helpful. ((((((HUGS))))
ReplyDeletexoxoxox