Parkinsons drugs

[charlton]

Changed from Modopar to Stalevo noticed that i am suffering with more Dyskinesia, is this Stalevo and can I go back to Modopar.

Meeting my consultant next week, would like to have a few of your opinions please

[Bailey_Texas]

First i would give it some time so you can adjust to the new meds. When do you have Dyskinesia. All the time or just sometimes. Day or night? Of course you can go back. Stalevo contains entacapone which can make your Dyskinesia, worse. At first when i started on carbidopa-levodopa which is what Stalevo is i had bad Dyskinesia. But i knew what it was so i just rode it out and it got better and now i have very little.

I take 6 50/200 extended release an 6 25/100 a day. One thing you can do is to stay active when i am doing something like walking, working in my garage or exercising i never get Dyskinesia only at night when i slow down it may happen.

A good exercise program will help.

[charlton in reply to Bailey_Texas]

Thanks for your reply, the dosage you are taking is a lot more than I take, do you take any other drugs? I take rasagline and ropinerole

I go to the gym 3 times a week I find running does help

[Bailey_Texas in reply to charlton]

Yes i take 1 6mg ropinerole 24 hour release in the morning.

I am doing crossfit 6 times a week and work out at home 3 times a week with my daughter.

[charlton in reply to Bailey_Texas]

I take 4mg prolonged release ropinerole,1mg rasageline, 1 125mg stalevo,first thing in the morning.

I then take another 125mg stalevo after 4 hrs, 100mg after 4hrs, 100mg after 4 hrs.

That's it until the following morning, don't sleep very well and feel really bad in the morning until I take my first dose again.

[4MCBFAMILY in reply to Bailey_Texas]

I read your response and saw you are taking 6 50/200 carbidopa-levodopa extended release. I've been on the 25/100 siniment 5 a day and recently got moved up to the 50/200 extended release 4 a day. How long did it take you to adjust to the change? I will say that I have not had any wearing off effects which is why my neuro put me on the extended release but it's got me a little quirky and I catch myself yawning quite frequently.

[Bailey_Texas in reply to 4MCBFAMILY]

I take 6 50/200 extended release and 6 25/100 a day one of each every 4 hours.

I take 1 6mg requip 24 hour release a day.

I take my meds every 4 hours 24 hours a day. I am never off my meds. I think it works better.

It took months to get use to the meds. I added vitamin D and my down time is almost gone.

[p-p-]

Rytary is the utmost best medication I have ever had, for Parkinson's. It lasts for 5 hours,it has relieved a lot of my problem areas and without it I would not only be a basket case but impaired to such a point I would not be able to function!!!!! More than praises, it's a MIRACLE DRUG !!! GO FOR THIS MIRACLE DRUG. YOU WILL NOT BE SORRY !!! Best, Pam

[Bailey_Texas in reply to p-p-]

I also took Rytary and it worked wonders but after a few months it started to last shorter times from 4 hours to 3 with a total melt down at 3 hours. Hope you get a life time of relief from it enjoy while you can.

[p-p- in reply to Bailey_Texas]

Thank you Bailey. Some additional good news my Dr. at Georgetown University Research Hospital and his colleague have come up with a cure to Parkinson's The second trial begins this month. It is a RE-purpose drug,an anti-leukemia drug called by it's brand name " TASIGNA" The university has the patent. All the Neurological Dr.s are doing this research free as volunteers.The info. and results hit national and international news. I can not go into the whole story from beginning to end,because I am overwhelmed with medical tests for other diagnosis. If you want more info. contact the Neurology Dept. at Geo.town in DC. Best ever, Pam

[rrunk7 in reply to p-p-]

Tasigna, the drug in the Georgetown study, is not a cure. Phase 2 Studies have to be done. The study was small (11 patients finished the 6 month study) but some results were quite dramatic. My wife has been taking it 10 months along with now reduced levels of the other meds we were taking. Jusy STILL definitely out. Google the study. Easy to find.

[Beemacs in reply to p-p-]

I was hoping Rytary would do that for me but I think my then neuro didn't know how to prescribe it correctly. I had horrible dyskinesia & went back to carb/levo.

[Serenity_finaly-1 in reply to p-p-]

I am trying to get back to Rytary. It is too expensive for me out of pocket.

[Hikoi in reply to p-p-]

p-p-

I see by his profile that Charlton is in the UK. Rytary is only available in the US so unfortunately not much use for many people here.

[p-p- in reply to Hikoi]

Truly,truly sorry Hikoi that Rytary is not available in your country.Make it your mission to obtain this miracle drug. God bless and good luck. Sincerely, Pam

[charlton in reply to Hikoi]

I will speak to my consultant about this on tuesday

[4MCBFAMILY in reply to p-p-]

I've never heard of that medicine. I'll ask my doctor about that one. I'm all for the miracles. Lol! Because we all feel a little basket case a little and a lot and a little and a lot.

[park_bear]

Why did you switch in the first place? Was the Madopar no longer effective for you ?

[charlton in reply to park_bear]

Good question, I used to get quite a bit of wear off in the morning, but that was all! I think the stalevo is no better and I am getting a lot of Dyskinesia, I am going to discuss going back to modopar

[Abdiqani]

Actually , may be a bit of little change of the drug effect caused this condition , so in fact It is important also to have moderate exercise as it helps you to sometime ignore the pain and have a pleasure . Consult with your doctor any occurrence or recurrence condition during the period of therapy .

[Bailey_Texas in reply to Abdiqani]

dyskinesia is caused by meds it is not a part of PD. Only if you count tremor. Moderate exercise may help a little but extreme lay on the floor hoping to get your next breath is 100% better. Moderate exercise will not produce

endorphins which is mostly morphine. Extreme exercise will cause the release of too many endorphins and cause a runner's high. I have had it happen 3 times in the last 3years and i like.

[Abdiqani in reply to Bailey_Texas]

But in a certain way , Parkinson disease has a three major signs that appear during the occurrence of the disease tremor , bradykinesia and rigidity or stiffness . In fact treatment of PD based on the structural location and primarily administered as medications levodopa and carbidopa . But also have a different therapies to approach . Now it exploring whether anti-oxidants have an effect with dopamine agonists drugs treatment and holding back progression of the disease. Generally poppy flower is manufactured Opioids in a class known as morphine which has a narcotic drug interaction. Endorphins naturally is a chemical release from the body as referred to us endogenous morphine . So far PD has no bio marker to detect the progression of the disease , thus seems dykinesia (On-Off phenomena) to regress after over dosage which effect endogenous system of the body but the precise reason remains unknown .

[superjanet]

My husband has always been on Madopar (17 years ago). Many years ago his consultant tried Stalevo and it caused dreadful dyskinesia. Went straight back to Madopar and he still doesn't have any dyskinesia.

[charlton in reply to superjanet]

I hope this will be my reaction if i go back

[enricomoraca]

È possibile prendere le Mucuna pruriens, che è una forma di L-dopa naturale che non crea problemi di sintetico L-dopa, tuttavia, si dovrebbe mi riferisco a un neurologo, perché è possibile rimodellare la terapia ..

[Serenity_finaly-1 in reply to enricomoraca]

I agree totally.

[ecurb]

@charlton, I would say the problem comes from Stalevo. About 5 weeks ago my neuro switched from Modopar 125 to Stalevo 100. Within 5 days or so my vision became blury, my voice and hearing had almost dissappeared, my head was spining and I could not walk not being able to lift my feet off the ground... I stopped taking Stalevo and went back to Modopar from one day to next and certainly feel "better "

...

[charlton in reply to ecurb]

Cool I hope so

[Hikoi]

Charlton

Stalevo is a combination drug. It is carbidopa/levadopa with another drug added Entacopone which makes the levadopa work more effectively and last longer in your system. This means that you are now getting more levadopa in your system. This why you get dyskenesia. Its NOT the stalevo or the entacopone which is in stalevo actually giving you the dyskenesia but the fact that you are getting too much levadopa now.

There are three choices, go back to your old regime or with the drs ok take less. If you had madopar 3 hrly you may find with stelevo you can go 4 hrly now between doses. The other choice is to ask to have the madopar again and the entacopone separately so you can take it say twice a day instead of every dose.

It also may be a little early for stalevo, i tried starting it 3 times ( over about 4 yrs) before i felt it was right for me.

Carbidopa/levadopa, or sinemet, or madopar = these are all the same drug levadopa. The only different is the extra ingredient to stop nausea etc

Hope this is helpful.

[johntPM]

I would see if the dyskinesia is correlated with the times when you have high levels of levodopa in your body.

Linked to your drug regimen, levodopa levels go up and down during the day. You can get an idea of what's going on by using:

parkinsonsmeasurement.org/t...

Using this program, you can see what effect a change of size or time of dose, or drug, may have.

You may like to look at:

- levodopa equivalent dose, a way of adding together the effect of different anti-Parkinson drugs;

- pharmacokinetics, what effect the body has on a drug; things like CMAX and THALF;

- pharmacodynamics, how a drug's effect on the body changes over time.

John

[4MCBFAMILY]

When I first got diagnosed they put me on mirapex and siniment but I had some of the same issues. My dyskinesia got worse especially when my medicine was at its highs. I didn't understand why but I gave it time to see if I could adjust to it. When I couldn't handle it anymore and thought I was losing my mind my doctor took me off of the mirapex and increased my siniment. Ever since then I've been feeling as normal as one can with PD. So give it a chance for a couple months but if it doesn't get any better I would stress to your neuro what's going on so he can make the proper adjustments. Good luck to you and stay strong. Remember we are all different in our symptoms but with the same battle. The battle we will win!

[charlton]

Hi Everybody,

Tried going back to modopar, increased the dosage, it was a mistake as wear off in the morning was worse, hope that muscle pain would go away didn't happen etc.

Back on Stalevo now! Also taking my 1 ropinerole tablet later in the day, I'm very hopeful that things are better, will keep you posted, I'm worried about being impatient, will keep it going this time.