Comments on Brand Name versus Generic and Clarification on RLS Syndrome

Dear Readers,


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



  

Day 2 of Brand Name Vs Generic

Dear Readers,

Sorry to bore you again on this same subject, but something happened in the wee hours of this morning and I just had to document it.


My Mirapex came late yesterday afternoon.   It was too late in the day for me to take it for the 2nd pill of the day, so I waited until bedtime.   Good thing I did too.


Now usually I take my last pill around 11:00 and immediately go to bed.   Well, apparently I fell asleep while reading in bed and missed my 11:00 p.m. pill.   I woke up at 1:00 a.m. however and discovered my pill still in the container waiting for me to take it.   I did take it at that time.


It is now 8:30 a.m. and I'm a drunk!!   I mean a staggering drunk!   I have a doctor's appointment in 1 1/4 hours and I know i don't dare drive like this.  It's a good thing Don is home today because he'll have to take me and pick me up, even tho the doctor's office is only 2 1/2 blocks from our house.    And I'm very thankful for my walker.  


I'm telling you this because there is that much difference (in my body anyway) between the generic and the Brand Name drug.   Parkinson's drugs are quite potent and work on the brain to replace the dopamine, which is lacking in PD patients.


I should have remembered this this reaction when they increased my dosage a a few short weeks ago.   Now I don't dare take my morning dosage or I'll be flat on my  back in bed.   I will have to delay first pill of the day until 1:00 this afternoon at least and then perhaps only take a half a pill.  Then try to get back on track with a full pill at bedtime tonight.      


Who would ever think that going from a generic to Brand Name or Brand Name to generic could ever make that much difference.


I remember when I first met with the neurologist concerning Parkinson's.  He did explain that we'll be going through lots of periods of medication adjustment.   


Next week we'll cover a different subject, I promise.


Mary

Brand Name versus Generic

Dear Readers,

How many times has your doctor said "the generic drug is the same as the brand name?"   I was under that impression until I started taking medication for an under-active Thyroid many years ago.   One year the family doctor forgot to specify "Synthroid only" on the script, so a generic was sent.   I was an emotional basket case after trying the generic for 1 week.  When I called the doctor's office, they immediately wrote a new script for brand name only. My symptoms were that of being a nervous wreck and crying at the drop of a hat.    Once I got back on the brand name drug, things were fine. 


I've been taking Mirapex for RLS for years and now Parkinson's, as I've mentioned before.  When the Nurse Practitioner ordered the new drug dosage for me, she did not know I needed Mirapex only (although it should have been on my chart).   I forgot to mention it to her, so I can't blame her.    But, why didn't the pharmacy question it due to the letter they had received from the doctor one month earlier, which they had requested?    


The generic drug does an okay job of managing the Parkinson's symptoms.  But, it makes my RLS (Restless Leg Syndrome) worse -much worse.  It is for this reason that I need the Mirapex brand only versus a generic version.   I'm about going nuts when I sit longer than a half hour.  The legs have a constant need to move.  Apparently the gal that I talked to last Thursday didn't really put a rush on mailing the Mirapex like she said she would.  The gal today assured me it would be shipped tomorrow, marked for overnight delivery, at no charge to me.  At least they are taking some responsibility for the snafu!


Because my RLS has kicked in big time and my Arthritis has also kicked in, I made a trip to Walgreens to pick up another bottle of Tylenol (can't take the other types like Alieve, Naproxin, due to Colitis).  There was not a box of Tylenol anywhere in the entire store.   I'm stuck because apparently the Tylenol manufacturer has recalled all the Tylenol - AGAIN!  I did buy Walgreens private label Tylenol, came home took 2 and it's done nothing for me, except make me feel hyper!   


I wonder if they make one of those medical alert necklaces that could say "Brand Name Only."  If I had remembered to tell the NP that I needed Mirapex instead of generic, I wouldn't be in this "holding pattern."  Hmmm, I think we still have my mother's antique cow bell in the basement.   That might work!   "Brand Name Only" could be engraved on it.   It could be worn around my neck and always be with me.  he he - wouldn't that be stylish!


I'm always willing to try a generic - it does cost me less.    But once I have tried the generic, and if the generic doesn't work, I NEED THE BRAND NAME!!!    


Have you noticed a difference between brand name and generic on any of your drugs?


Sorry if I'm sounding grumpy - I am.  The fact that you can't buy any Tylenol presently just pushed me over the edge because my entire body hurts.  (added note just before publishing: The Walgreen brand Tylenol made me hyper last night.)   


I shouldn't complain because some people today can't even get a prescription drug that they desperately need because there is a drug shortage, brought on by the drug companies themselves I hear, so they can raise the price of the drug even more.   Hmmm, now I wonder if this is what Tylenol is doing!   Food for thought!


I hope you will come back again next week.  I promise to be in better humor.  
   
Mary


Update at 4:00 EST- YAY - the Mirapex came.    I'll be a happy camper tomorrow.   

Thank You To Debra

Mariodacat whiffin the leaves

Dear Readers,

First a public thank you to Debra of http://manxmnews.blogspot.com for sharing her knowledge and first-hand experience with PD in the blog post of 10/8/11.    I am so happy @AdmiralHestorb's mom introduced us on Twitter or we might not have found each other.  Debra, you have been so helpful to me already with your sharing, caring, and support in emails.  This is exactly the type of thing I was looking for when starting this blog - a way to learn together and share.

There have been so many great comments and suggestions left by you dear readers.  I've learned from each one and will take time now and then to address them in a blog post.

One of the first comments left was from @jbkitteh.   His human/staff person had just lost her mother to Parkinson's and dementia and was headed out of town to be with her family, but took time to read my blog and share.   She is the one who suggested I pick up the book The Parkinson's Disease Treatment Book, by J. Eric Ahlskog., M.D. (PD expert at Mayo Clinic).   I'm so happy she did too because it's a great book.  A little thick perhaps, but it has just about anything you would want to know in it.    She also mentioned that there are drugs out there that can cause PD symptoms.   Needless to say, that comment peaked my curiosity and I had to do some research on that subject.

Page 57 of The Parkinson's Disease Treatment Book by J. Eric Ahlskong, M.D. does indeed list Drugs that cause Parkinsonism.   I will list those drugs that are mentioned in his book.   IMPORTANT:  I want you to promise me that you will NOT stop taking these drugs without talking with your doctor first.  Most of the drugs mentioned are used to treat psychiatric disorders, psychosis, etc. The purpose of this list is to make you aware only so you can check with your doctor to see if the benefits of the drug outweigh the risk.   I am no doctor.   I'm simply sharing my very limited knowledge with you.

The medical field knows that when your brain is lacking in Dopamine, you may exhibit Parkinsonism symptoms.   Some of these drugs are known to "Block Dopamine Receptors,"  

Aripiprazole, Chlorpromazine, Haloperidol, Loxapine, Mesoridazine, Mesoridazine, Molindone, Olanzapine - in highr doses, Perphenazine with Amitriptyline, Thioridazine, Thiothixerne, Trifluoperazine, Ziprasidone, Amoxapine, Metoclopramide, Promethazine, and Chlorpromazine.

The book also lists:

Valproic Acid - used to treat Migraines, Seizures, Psychiatric disorders;    It's unknown how this relates to Parkinsonism.

Amiodarone - used to treat heart rhythm disturbances - again unknown as to how this relates to Parkinsonism.

Some of the comments received have been from people indicating they have a relative with PD.   If you ever wish to share your knowledge on the subject, please just leave a comment stating that.   The more input we have on this subject, the more we learn.

On a lighter note - this morning Don and I went to Sam's Club for a few items.  Well, that store is gigantic!    Instead of taking my walker, I decided to push a cart because we were picking up several items.  I did not remember that a cart gets heavy as you pile things in it.   I was wiped out by the end of the excursion and wondered if I'd make it back to the car (which was parked in a handicapped area).  

What really makes me feel bad is that Don had already spent about an hour this morning mowing up a large bunch of leaves to drag to the curb (we could hear the truck used for picking up leaves navigating the streets near us).    Because it's supposed to rain on Thursday for sure and maybe tonight and/or some tomorrow, he wanted to get as much picked up as possible while it was dry.   Anyway, he was breezing thru Sam's Club like he was 20 years younger.   I'm happy he's doing so well, but I feel badly much of the time that I can't do more to pull my weight around here.  

Until next time,

Mary

Guest Blog Writer @Manxmnews' Mom

Photo provided by Debra, Guest Writer, taken at the beach near their home in Florida

Hello,

I am Abby's Mom from Manxmnews.blogspot.com. Mary has graciously asked us to guest post on her blog and share our story with you about Parkinson Disease.

When your life partner and husband is diagnosed with Parkinson Disease you realize how dramatically life changes.

Several years ago my husband who was in his mid-50's noticed his left hand was having sudden slowing movements. He wasn't sure what was wrong so he went to see his primary care Doctor who in turn referred him to a Neurologist. The Neurologist confirmed he had a form of Parkinson Disease. The Doctor explained at the time that PD is like ice cream flavors, and that when the medical field refers to PD they are categorizing it as 'vanilla'. He explained that my husband had another flavor of PD and he was diagnosed with Parkinsonism.

Parkinson's disease is a progressive disorder of the nervous system that affects movement. It develops gradually, often starting with a barely noticeable changes. Most people are familiar with seeing people with tremors but I think that some people may not know that Parkinson's also covers a slowing or freezing of movement too.

The symptoms of Parkinson's disease will vary from person to person. Early signs may be subtle and can go unnoticed. Symptoms typically begin on one side of the body and usually remain worse on that side even after symptoms begin to affect both sides.  In my husband's case it started affecting the left side of his body. It began in his left hand and has now progressed to his left arm and leg. It has also affected his speech, voice, and the ability to swallow.


For many many years my husband refinished antique furniture. He had to work with some very strong chemicals. In researching PD I found that there is a very strong correlation between PD and farm workers who have been exposed to harsh chemicals and pesticides. This has made me wonder if there is also a cause and effect between the chemicals used in refinishing and PD. I can't begin to tell you how important it is to use caution when working with strong chemicals .


He has always been so active and it's been hard on him to know he has limitations that are beyond his control. Parkinson's  has impacted his stamina as well as his ability to move easily. Parkinson's is a progressive disease and it will have a greater impact him as he ages. It has meant changes in the things he can do that we both once took for granted.  But we are fortunate and we can work around these obstacles. Parkinson's is hard because there are physical inabilities, and mental ones as well.

There's no cure for Parkinson's disease, but medications can help control some of the symptoms of Parkinson's disease. My Husband takes a carbidopa/levodopa drug called Sinemet which has been his lifesaver. He has had to adjust the dosage over the years to keep it working in his system.

Living with any chronic illness can be difficult, and feelings of anger, depression, or simply feeling discouraged are normal. Parkinson's disease presents special problems because it can cause chemical changes in the brain that can make a person feel anxious or depressed. And Parkinson's disease can be profoundly frustrating, as walking, talking and even eating become more difficult and time-consuming.


Debra

You can visit Debra's delightful, beautiful kitties -   Abby, Boo, Gracie, Jinx & Ping at their blog:   http://manxmnews.blogspot.com/2011/10/mamas-cup.html   Wait until you see Debra's stunning photographs.

Thank you so much Debra for your excellent post.   I learned a few new things from you.   I do see myself in some of these symptoms.  But, more on that another time.   Your insight and information is greatly appreciated.   As I have mentioned to you before in emails, it's so sad when a young person (yes, 50's is still young) has this disease.  At least it hit Don and I at an age when we expect to get some chronic disease or illness sometime soon.    Kitty kisses from Mario to Abby, and a big HUG from me for doing the post. 

Readers, please feel free to leave comments for Debra.  I get an email on all comments and can easily forward them to her, or she can visit the blog and see them that way.

Solution II - Help From The Most Amazing Places

Fall in beautiful Wisconsin

Dear Readers,

Having made the big decision to stay in our house led to another problem.   How to find help for some of the work around here.

Don used to do most of the handyman things himself - fixing things, minor plumbing problems, etc.  We started hiring things like that out about 10 years ago after he had a knee replacement.   We have a good list of resources available now for the handyman type of jobs, if needed.

But.... what to do about yard work (mowing, fall cleanup, and the inevitable moving snow around)?   We live in a neighborhood consisting of more retired folks than young families.    We have no neighborhood kids to hire. 

We were discussing our progress with our very good friends at breakfast one morning (2 couples whom we are good friends with,  have camped with,  gone on cruises with, and had breakfast once a week with for 30+ years).   I happened to mention we'd probably need help with some of the yard work: mowing, fall leaf cleanup, snow shoveling, etc.   My thought was to start calling ads in the local newspaper.

Well, to make a long story short, one of the couples called me later that day and asked if we'd be interested in hiring their 13-year-old grandson who was just starting to help with those types of things a home.   Prayers had been answered! We know the grandson, his sister and parents so well too because they are part of our camping group (we gave up camping last year because it was getting to hard for us).  Harrison and his sister were practically born on the campground with us.  (Not really, but they camped as babies still in diapers.)  A very lovely family.

What a blessing it has been to have Harrison's help (and his dad's help too).   There are times Don felt like mowing and there were times he didn't.   Harrison to the rescue!  I don't know what we would do without him, and Harrison is happy to have green papers to spend.  it's a win-win situation, and sure has helped us out. 

Just this past week, leaves began to fall off the trees.  We have 2 old, large trees in the back and one tree in the front.  Harrison just mowed them up last Friday for the first time - now the yard looks like this again, and it's only 6 days later.   By the way, the front yard barely has any leaves on it - that tree is waiting to shed after the backyard is thru.  Sometimes I think the trees talk to each other and plan this on purpose.

Leaf cleanup will extend probably into the first week in November unless snow arrives before then.  (Parish the thought!)

We are so very thankful for Harrison's and his dad's help.   They are a blessing to us. 

So, it looks like all our problems of how to manage the work are solved for this year.  Maybe Harrison will want the job next year too, but we'll cross that bridge when we come to it.

Don and I are so fortunate to have a wonderful support system of good friends that we can discuss things with and have some fun with.   Another blessing in our life. 

Now for some news:  I'm very excited to announce that I'll have two guest bloggers sometime in the next few weeks.  They both have experience with PD, but from a different perspective.   So stay tuned - both are Twitter friends.  But I'm keeping their names secret for now.

Thanks so much for visiting.   I do hope you'll come back again. 

Mary

Solution No. I - Stair Climber

Hi Friends,

I swear Twitter and Blogs are the best places to hash over problems and find solutions.   After we decided maybe an apartment was not such a good idea, the problem still existed of handling the stairs to the basement, and some of the other work.  

A good Twitter friend of Mario (and me too actually) suggested we check out a stair climber.   She even forwarded a link to a site that sells them.   I never thought of this myself, and really didn't even know they existed.  

Rather than order from some web site where they just ship it to you (sounded a little scary to me), I decided to call one of our local home medical supply stores in our city to ask a few questions.   They not only sold them, but would also install and service down the road should there be any problem.   We made arrangements for the salesman to visit the next day to discuss the possibility of one.

Now these gizmo's are not cheap.  In fact, you are looking at about $4,000 installed.   Expensive yes!    And, Medicare would not help pay for it.   Since I'm the one that was having trouble going up and down stairs, Don left it up to me.  In fact, he made it very clear that he did not intend to use it.

Quite frankly, he needs it as much as I do, only for different reasons.  His mobility is good, but he has a habit of carrying things up and down the steps without hanging on to the railing.  He's an accident waiting to happen.  But, it was a macho thing with him.   He can handle the steps on his own, thank you!!!   None of this handicap stuff for him.

Obviously I did decide to have it installed because you are seeing pictures of it. It is the BEST! I'm so happy I made the decision to get one. Now that it's been here for a couple of months, Don does use it - not to ride in himself, but he does pile things on it to haul up and down the steps. I'm so thankful for that. If it prevents him from falling down the steps, it's well worth the investment. I still try to take the steps manually at least once a day and sometimes more. It just depends on the day and what I'm up to handling.

The guys were able to install it in 3+ hours, and I had my first ride to test it out.   When we built this house, little did we think 35+ years ago that the steps should be made wider by an inch or so.  What did we know - we were in our late 30's and wasn't thinking down the road to 60's and 70's.   But the stair climber just fits.   Don's knees don't have more than an inch of clearance from the other wall, but he's able to ride it if necessary.  

I was worried that Mario might be afraid of it, but he just watched it in fascination.  After it was in the house for about 2 weeks, I picked him up one day and put him on my lap for a ride downstairs.   He didn't fight it, but well, he's a cat, and cats don't like to be forced into anything.  Thus, he was more than willing to hop off my lap when we were 2 steps from the bottom.

We are very happy with it and would never hesitate to recommend it to anyone who might be in need of one.   As a friend told me - it's probably cheaper than moving and paying rent.   She is so right.

Stay tuned to see what other problems we can solve.

Mary