Adding meds

I've had PD for almost 9 years. I've had nothing but Carbidopa/Levodopa 25/100,starting low with 1 1/2 tabs 3 times /daily. Now, 9 years later, I'm taking 2 tabs 5 times/daily. This doesn't cover me through the night, so, my doc ordered C/P 6 times/daily. He also ordered Comtan (entacapone) 1 tab 6 times/daily with the C/P.

I seem to have more "off" times and just want to feel As "normal" as possible.

Is there any one out there who can identify with this? Does this med regime work for you? Also, I'm not sure I want to pay over $2.00 per tab, but my doc didn't offer any other options. Any suggestions?

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  • Our son Martin, 48, has Early Onset PD and after 5 years is now on 1.5 of the 25/100 tablets, 6 times a day. He takes Controlled Release 50/200 tablet at bedtime. I'm not sure that he would say he feels 'normal' but this regime seems to give fewest 'freezing' and dyskinesia episodes. We are not happy that this will still be the same in 5 or 10 years.

    Regarding the $2 cost, we are eternally grateful for the NHS in the UK.

    Hope this helps.

  • Controlled Release makes all the difference in my experience.

  • hi, I've had PD for 7 years and counting, I only took PD meds for the first three months, didn't like the side effects. Found a fab neurologist who put me onto Parkilyne (Selgiine) and I'm satisfied with my slow digression. My advice, listen to John Pepper and exercise exercise exercise! I don't know what I'm going to take now, as Parkilyne has benn discontinued (this month). Probably AZILECT. My advice don't up your meds exercise more. Good luck! :)

  • Blue-jeans

    I'm curious as to what your symptoms are like?

    So all you are on after seven years is. Selegiline! You said Parkilyne is discontinued, perhaps that brand is stopping but you should still be able to get Silegiline in Sth Africa. It's available in other countries.

  • Hi Hikoi, my symptoms are not too bad. my right hand shakes, about a year ago I noticed my lip trembles, and if I don't exercise I quickly lose core strength. At the end of last year I participated in a four month intensive BioKinetics program to help a bio kinesist (SP?) who's thesis was The Benefits of BioKinetics on PWP's. It really worked for me, exercise is definitely beneficial. No, no Parkilyne in SA. I'll have to take Aziect.

  • That's it, Right hand shakes and lip trembles 7 yrs post diagnosis, I'd be getting another opinion blue jeans. You might be carrying a label you don't need.

  • Azilect is a new format of selgilin it purpose to slow down progression of pd

  • Have you ever thought of having deep brain stimulation.? DBS I had the same problem with medication,had terrible wear off symptoms including bradykinesia .My hands became numb and as a result I could not do a thing. I decided I had had enough. I decided to go for the DBS

    Its a long op but really worth it.I had it done 11 years ago and have never looked back I was able to cut back on my meds resulting in my not having to suffer terrible side effects .I play golf 3 times a week, go to gym 3 times a week ,still work and drive over 1000 kms a week.Iforgot to mention I have had PD for 17 years. Its really worth thinking about.The op really turned my life around .

    Kind Regards

    Darryl Foss (South Africa)

  • I've heard it's unpredictable outcome....is that true?

  • I know quite a few people who have had DBS and all have done very well.

  • My insurance (afforable healthcare act) has no copay for Carbidopa/Levadopa

  • That's awful, sorry for you

  • you guys need to vote in socialised medicine!

  • Are you kidding? The Rytary we use wouldn't even be available. I can read the complaints here and recognize if someone is from the UK. They can't get appointments for months, they get nurses instead if doctors, they can't get the certain meds. No thanks.

  • PEOPLE ARE DYING IN WAITING ROOMS IN QUEBEC, CANADA. MOST ARE SERVED, BUT I DOUBT IT'S QUALITY SERVICE....AND IT'S NOTHING TO DO WITH SOCIAL MEDICINE, IT'S DUE TO THE MULTICULTURAL NATURE OF COUNTRY.

    THEY DISCRIMINATE BY SHIRKING. THIS WAS THE CASE EVEN BEFORE MEDICARE KICKED IN. IT'S POLITICAL.

    CHINESE COMMUNITY FOR EXAMPLE BUILT A SECOND HOSPITAL IN MONTREAL...AS SOMEONE IDENTIFIED AS A RUSSIAN-CANADIAN...I SHOULD PROBABLY AVOID IT. DON'T FARE BETTER IN FRANCOPHONE ESTABLISHMENTS.

  • My reply was to Donzim

  • We are from UK and have a Parkinsons nurse and a neurologist who we see regularly for my husband and there's no long waiting list at all. As for the meds they are on the ball with his.

  • Yes I can. I have had PD since 2001. I used Comtan for maybe 6+ months and it did help the C/P last a little longer. But, it is very expensive. I use Rytary now, it's very new works fairly well but also expensive. If you have some insurance and the copays are very high for these meds try PAN Foundation. They will pay, if you qualify, for all of your copays on your PD meds. I was surprised, but I did qualify. My Rytary has cost me nothing for almost 4 months. They also cover Comtan, C/P, Ropinirole, etc. My primary insurance is billed first I have BCN Advantage - Medicare. Then, the copay is paid for by this foundation. But SAVE all of your little receipts that come with the medicine. This foundation is funded by private donations. They cover other diseases too, but maybe only around 15 diseases. So, not all of our diseases are on the list. But, PD sure is. Good Luck!

  • Hi si

    I use entacopone (but meds are free after first 100$ /yr In my country). The combed med l/c/ entacopone is called stalevo. It's expensive too.

    When I started entacopone I decreased the amount of levadopa i took. Most people need to do this and you might find it on the drug sheet that comes with the meds. When you say more off times I had that because I was overdosed. It is hard to work it all out but I was able to cut out one dose a day and extend the time between meds.. Good luck

    PS diagnosed 2008, similar to you?

  • Try Rytary. It's expensive but we have had wonderful results. Just make sure your doctor knows how to dose it....a lot don't. Call the Rytary help line to get familiar with it.

  • Hi si-simary, I have had PD for 8 years (age 69 now) and my dosage is similar to yours - 5 to 6 times a day 2 C/L 25/100 (1 is extended release). Almost every day in late afternoon I bike, hike or X-Ski for 45 minutes to 2 hours. Before aerobic exercise I use a vaporizer with high grade medical marijuana (just enough to get in the zone), stretch and then do push ups and ab work. If I plan on a more intense workout I do 2 C/L 1/2 to 1 hour before I start and add one more C/L when I start the aerobic activity.

    When I complete my workout at 5 PM I drink 1 to 2 beers before dinner. 50% of the time I don't need any more C/L before retiring at 8:00-8:30. I don't take C/L during the night, wake up to 3 times and get back to sleep. I have foot dystonia in the morning on both sides, but just work it out. I try and avoid C/L for 1/2 to 1 hour after I get up at 4:00-30 AM to sense where my symptoms are at without Rx. I have a severe right hand/arm tremor when not on Rx and mild dyskinesia (upper torso movement). I continue to work full time in my own business as a business adviser.

    Some things I have learned about PD. Each of us is different. I am sharing my experience and background so that you can select what might work for you. Any PD expert will suggest exercise - any type helps. If you can, increase the intensity of your workout at times. I was an endurance athlete before PD and I am an endurance athlete after PD. While I can't do things at the same level, exercise helps your attitude and outlook.

    As for medical marijuana, I believe the medical and healthcare community is just behind the curve. Here at least is some hope that they will look into it (FROM LINK BELOW).

    Scientifically it is not crazy to think that marijuana may play some positive role in the alleviation of Parkinson’s disease symptoms. There are cannabinoid (THC) receptors all over the brain, and these receptors seem to be concentrated in a region important to Parkinson’s disease, commonly referred to as the basal ganglia. In fact, the globus pallidus and thesubstantia nigra pars reticulata, which are structures within the basal ganglia, are some of the most densely packed cannabinoid (THC) receptor areas in the human body. It is therefore not beyond reason to think that a drug directed at these receptors might positively influence the symptoms of Parkinson’s disease. Indeed, many drug companies remain interested in compounds influencing these receptors.

    WHAT I BELIEVE THEY ARE MISSING IS THAT IT IS THE COMBINATION OF INTENSE AEROBIC ACTIVITY WITH THC AT THE CANNABINOID RECEPTOR LEVEL. I CAN TELL YOU THIS - I'M NOT GOING TO WAIT FOR THE HEALTHCARE COMMUNITY TO FIGURE IT OUT. IT WORKS FOR ME. MARIJUANA IS A MAGICAL PLANT THAT HUMANS HAVE BEEN ATTRACTED TO FOR CENTURIES.

    parkinson.org/find-help/blo...

  • Thanks for all the good information. It's interesting to see the different meds that PwP are taking.I'm going to have another

    Conversation with my doc about Endacapone. I'm wondering if an added dose of regular c/l would be enough to get me through the night. Endacapone is so expensive and I'm supposed to take 6 per day. Anyone have any ideas?

  • Try the Neuro patch...but very expensive. My mom is having very good results with pill and patch combo. Good luck!!

  • Hello. I have heard you can buy entacapone on line if you have a prescription from others on this forum. You may want to investigate as I understand it can be cost prohibitive.

  • Unfortunately, none of the Pd medication available today has any affect on the progression of Pd. They all endevour to temporarily mask one or two of the symptoms, but the body very quickly get used to the medication and the medication ceases to have any effect. So you have to increase the medication to get the effect you want, but you eventually get to the point where you cannot take enough medication to get any effect. Very sad, but true.

    You have unwittingly painted yourself into a corner. Drug addicts do the same thing, hence drug overdose, which kills them.

    If only you had known that fast walking actually reverses many of the symtoms of Pd, and after six years, I was able to stop taking any Pd medication and I now live a 'normal' life. I am not telling you this to make you feel bad or to make you cross with your doctor, I am hoping that you will be able to start doing some exercise and fight back against the Pd.

    If you are able to get into an 'ON' state, and were to start walking as fast as YOU CAN, and do that every day, you might just be able to start the ball rolling. I don't know if that is possible but it is worth trying. You might like to talk to me about this. If you do, then go to my website - reverseparinsons.net and I will talk this through with you.

    John

  • Hi Gohn Iam ruthgt your post is very interesting can't go into your website from my tab I would like to hear more about the walking fast program how long did it take you to reduce your meds

  • Hi ruthgt. I was first prescribed Sinemet andSymmetrel, which I took for two years. My neurologist then took me off those and put me onto one medication, which I took for the next 8 years. Then, my condition was so good that I was able to come off that medication immediately.

    I still do the fast walking and have been off medication for 14 years.

    John

  • What you mean fast walking and for how long per day

  • Hi. Fast walking is as fast as YOU CAN WALK! If you are not out of breath after walking fast for ten minutes, then you are not walking as fast as you are able to do.

    When you start doing the fast walking you should only do it, flat- out for ten minutes, every second day. Then, after two weeks you can add another five minutes and walk for the next two weeks for fifteen minutes every second day, FLAT-OUT. Then, every second week you add another five minutes on until you get to one hour. Then you concentrate on walkig faster and faster.

    John

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