Effects of Requip

Hi everyone. My husband was started on Requip some months ago. He felt some improvement in walking etc but as soon as he got to 3mgx3 a day it was as if he suddenly got worse rather than better. He began to shuffle with his arms dangling and lost facial expression and seemed to lose his personality. he became uncaring is the best way to describe. He cut the tablets back to 2mg x3 and was OK again. When he saw his neuro he said that was nonsense and what had happened was that he was taking enough to reduce his dopamine reduction but not enough to help him. I still can't get my head around this. If that is the case why do people need meds increased over the years? Anyway he is now back up to 3mgx3 a day and increasing them to 4mgx3. Back to the same old symptoms and it is like I have a stranger in the house. He refuses to accept there's a problem or go back to the neuro. Has anyone had a similar experience or any advice?

kellSC It truly is trial an error,and just a small doseage increase can push you over the edge.My big question is, if a given amt of med works why increase it?my neuro routinely tried to increase both my mirapex,and stalevo.I told him I was holding off on doing so until I felt the need.His reply was "you know best based on how you feel." Took me a while to find him.I think he is a keeper.In your husbands case,Sherwood,it may be time to try another neuro.Or to put it politely get a second opinion.wish you all the best.Ed

Since you asked for experiences with Requip, here goes.  Someday someone is going to get mad about this, but I will never take Requip again no matter who recommends it!  I had hallucinations (saw bugs),  Was so sleepy that it's amazing that I didn't wreck the car and my behavior was  probably not quite normal although I'm not sure how much it was noticed.  The neuro's nurse told me to just stop taking it.  I did and had my first ride in an ambulance.  If you plan on decreasing or stopping doseage of Requip please do so gradually.  Extreme side effects are not unusual with Requip and my personal opinion is that it is a dangerous drug with little benefit.  

Uable to sleep at night and unable to stay awake during the day.  Sounds like me.  As for being difficult to live with, you'll have to ask my wife.  Good luck.

Sherwood, Is your husband currently on sinemet?With those symptoms sinemet may help him.Just my opinion check with the neuro.Wish you,and your husband the best .Let us know how he makes out.Ed

SHERWOOD, Is he still dragging his foot and having difficulty breathing?  If so, he should go to the emergency room.  Keep in mind, of course, that this is a personal opinion from a non-medical professional.  Also, is it possible that he forgot to take  the Requip for awhile?  When I stopped taking it I twice "froze" to the point that I could not move anything, not even a finger, AT ALL, for a short while.  I couldn't speak and was having trouble breathing.  The symptoms that you describe could also indicate other possible problems unrelated to Parkinsons or his medication.  Please stay in touch and good luck.  

Post Edited (gtmriviera) : 7/10/2009 9:24:02 AM (GMT-6)

I was on Requip. It ws terrible for nausea and dyskinesia. The doc switched me to Stalevo. A bit better but not much. (Expensive!, too). I'm now on Sinemet and it is MUCH better for me. I have developed a very simple way to measure my tremor and have found that some Vitamins can really change the effect of the medication - Vitamin E seems to be a real negative for the Sinemet). I've also used the test to help recommend my own dosages and the time that I take the pills. My neurologist is GREAT. He's asking that I apply to Michael J. Fox Parkinson's Org for a research grant. I plan on doing that soon. I hav ea few more vitamins I want to evaluate before I write my paper.

I take my Sinemet meds 5 times a day. I barely have any "off time" at all, now. My first pill is at 7:00 a.m. and by 10:00 a.m. my tremor has almost disappeared.


Oh, by the way, the Sinemet is saving me almost $200 a month in drug cost as compared to the Stalevo.

gtmriviera,

I also suffer from heart disease and underactive Thyroid so my results may, of course, prove to be different from what others experience but here goes:

The effect pf the Vitamin E seemed to be almost immediate. I take 2 Sinemet tablets (2 X 25mg/100 mg) 5 times a day. 7:00 am, 10 am, 1:00 pm, 4:00 pm and 7:00 pm. I took one 400 UI tablet of the Vitamin E (Member's Mark) at 7:00 a.m. with my first Sinemet pill.

The Sinemet usually "takes effect" within 30 minutes of that first dosage. The Vitamin E tablet seems to have delayed the effect of the Sinemet by almost 2 hours. I'm convinced it's an interaction but, of course, it's dangerous drawing too strong of a conclusion from only one test.

My normal early morning "3LT statistic" normally comes in at about "115". After the first dose of Sinemet it drops suddenly to around "80" by 7:30 am. I feel fairly good there but feel best at "70" or less (most "healthy people" seem to have a 3LT "statistic" of about 60-70). With the Vitamin E it was almost 9:30 am before the Sinemet took effect. My neurologist seems to agree with me that the vitamins are effecting my PKD and one of the GP doctors I work with thinks it's doing something to with my heart <smile>. They're probably both right!

I plan on repeating the Vitamin E study in a few weeks.

Right now I'm looking at CO Q-10. It's giving VERY exciting results. My neurologist specifically asked that I take look at it. Be careful, though, different dosages are giving very complex results. I'll be looking at 50 mg, 250 mg, 500 mg, 750 mg and 1000 mg a day.

My results with something called "Ocuvute PreserVision" multivitamin were terrible. It made me nauseous. It dropped my "3LT statistic" but it varied wildly during the day and I experienced LOTS of dyskinesia. Oh, well.

If there was a way to attach my plots to this message I'd be glad to provide them but I'm too new at this message board to figure out how to do that!

I'm also a bit concerned about any possible legal issues if I provide that information here but I assume that as long a I say "use at your own risk - no warranty implied or accepted" <ha> that it will be ok.

This is all very experimental data and none of it has been independently confirmed! (<whew> Have I made enough excuses, yet? <smile>)

Good luck.

yekkimo,

I'd be happy to. Here's a very short "excerpt" from a paper I wrote that tries to explain what the vision of the test is:

"Our bodies are a complex mechanism of a thousand-fold interacting systems that are kept in
harmony by a master drummer. It keeps time. The rhythmic signatures of all of our body's
mechanisms playing as an orchestra show up as a mild tremor in our hands. It’s a complicated
engine that "hums" when in tune and sounds "wrong" when a piston slaps.
The 3-Line Test tries to break that "hum" down into its constituent signals so that one day a
doctor might diagnose illness from a patient’s handwriting."

The actual "statistic" I've been quoting here is a ratio of the number of "Y-axis" counts (motion or up and down deflection) of the patient's tremor divided by the number of "X-axis" (side-to-side) counts. The math is extremely simple if you know anything about Chaos Theory.<smile>


Thanks so much for your helpful comments and interest!

gtmriviera,

there is some work being done on CO Q-10. I don't think a real test for Parkinson's Disease exists so most researchers are really hindered. Here is one study that I am aware of:

http://www.ninds.nih.gov/news_and_events/news_articles/pressrelease_parkinsons_coenzymeq10_101402.htm

I quote: "Results of the first placebo-controlled, multicenter clinical trial of the compound coenzyme Q10 suggest that it can slow disease progression in patients with early-stage Parkinson's disease (PD). While the results must be confirmed in a larger study, they provide hope that this compound may ultimately provide a new way of treating PD."

The 3LT (3-Line Test) that we're developing was meant to provide a method of testing for Parkinson's. We've also seen some indications that it might be able to detect other diseases but, of course, I really hesitate to say much about that. There are example plots on our webpage if you want to check it out (at the top of the page you should change to the 2nd page and open the album "Welcome to 3LT". It has a picture of a turtle on it <smile>). I put the URL in my profile here so you should be able to find it.

I'll go ahead and upload the data plots we've generated showing the effect of Stalevo and Sinemet on my tremor. I'll also include the plot showing the Vitamin E. I hope the plots are easy to understand. (The resolution of the pictures might be a bit blurry on that site but if you "zoom in" you should be able to make them out. The bottom axis is time of day and the data plotted is the "statistic". So, from left to right (morning to night) it'll give you an idea of how I react to my medications during the day.

Once again, these are my results. I really can't state how anyone else might respond.

Have a good day!

I have been keeping an eye on the clinical trials for C0Q10 and one finished in January but as yet no results posted. I have lost the details of the site but one trial of 12oomg a day did show benefit and a further trial was going to take place to see if 600mg was enough [I assume because of cost the lower the better!] With that in mind my husband has tried 600mg a day for about the last 4 months. His neuro says waste of money the only thing proved to slow progress is Azilect but I think if we can afford it so what. I'd be gutted to find trials show that it has amazing benefits and he was two or three years down the line. No unpleasant side effects but he really is not himself on Requip. An appt with his neuro tomorrow so we'll see what he says. I feel my loving affectionate husband has gone for ever. Does Parkinsons make you 'detached' and unfeeling? I was prepared for physical changes in years to come but not emotional ones.

The medications can have some terrible side effects. But there is also an inevitable feeling of despair that eventually creeps up on a person when confronted with an incurable disease. I never really understood it until it happened to me. I'm keeping ahead of that battle so far because I've refused to give up. I maintain a real hope that if I keep working at it that I'll discover a solution. Unfortunately, I've experienced some real periods of sadness that took a real effort to escape from. A big problem is that PD messes with my adrenaline. I've lost control of it. Even the act of writing simple messages like this one tends to increase my anxiety level a bit. I find myself avoiding conflict when at one time I welcomed it. When coupled with the inevitable fights with the insurance company, job loss and day-to-day family conflicts I am amazed that people can find the strength to continue. But yet, they do and must. It sounds so contrite when people tell you to join support groups, depend on your family, read, go to church, write poetry, whatever. The likely result of not doing those things, though, is that you will die long before your time. It's death of the spirit.

Sherwood,there are alternatives,for your husband , to try before dosage increase.These include both cutting down the dose,and the interval at which you take the med.Try taking the meds on a relatively empty stomach.I wait 1/2 hr after a dosage before eating.Avoid large amts of protein.I also find that low impact exercise after I take meds helps.This includes walking,and just generally moving around.Last but not least youcontrol what goes in your mouth not the neuro.You can smile and say sinemet 100 works great as you are cutting them in half with a pill cutter.Naughty me I didn't say that.Never forget unless your neuro has pd you know more about it then he or she.This is alwways applicable to the meds you put in your body.We are all different when it comes to meds,and pd this means we have to find what works best for us under trial and error,and a good neuro knows this,and will throw the cookbook away in favor of good old taste testing.If you work well with your current neuro stay with him/her if not time to get another.I know I went thru a few before settling on the one I've had now for 7? year.Wish you,and your husband the best Ed