How much levodopa do you take?: My drug... - Cure Parkinson's

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How much levodopa do you take?

batwing7 profile image
14 Replies

My drug regime daily is: 1.25mg Zelapar, 750mg Sinemet Plus and 200mg of Sinemet Plus. I have been taking 300 mg of Amantadine but it led to the blotchy skin condition Livedo Reticulasis, urination difficulties and other disagreeable side effects. Amantadine did help me to cope better with pd and stopping has necessitated increasing the amount of Sinemet I take to cope. I have looked into replacing Amantadine with Rimantadine back to 800mg ish but it is not licensed in the uk. I am concerned about the amount of levodopa I am taking esp/ecially as it causes even worse problems!

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batwing7 profile image
batwing7
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14 Replies
Hikoi profile image
Hikoi

Hi Batwing,

I take madopar and take 500mg day, sometimes 600mg. I know many people who have been on levadopa 10 plus years with but the only ones with marked dyskinesia were diagnosed very young and took large amounts of levadopa early. It would be interested to hear if others here are badly affected by dyskinesia and what their drug experience has been.

in reply to Hikoi

It would be interesting to hear if others here are badly affected by dyskinesia and what their drug experience has been.

batwing7 profile image
batwing7

Thx Hikol. In my case I was dx about twelve years ago and took dopamine agonists from 2002-7. Due to serious ICD behaviour I was taken off these in 2007. At this point levodopa was prescribed. Initially it was great but in time you nerd more and more to keep feeling ok and it takes over your life!

Hikoi profile image
Hikoi in reply to batwing7

I agree totally, it sure takes over your life! Im having lots of problems with tremor at the moment and hoping it will settle soon with increase in meds. I liken our life to that of an insulin dependent diabetic, we have to have regular doses to keep functioning. L Dopa really only lasts about 3 hours according to all that I'm told and from experience now too. I find that i have very low energy when my meds have worn off so I'd rather take meds than cope with that.

harding55 profile image
harding55 in reply to Hikoi

mine is only lasting 3 hours too. I can't stand it.

Hikoi profile image
Hikoi in reply to harding55

Theres not much choice is there! L Dopa,s half life is 90 mins so on average it last 3 hours. Guess its is taking meds three hourly or adding something like entacopone.

I take Madopar x 3 daily (since 2010) and a Neupro patch daily (since 2012).I can now feel the tremor getting worse. I suppose the Quack would increase the dosage, but I am intent on going as long as possible without increasing any drug dosage, so have taken up my painting again, and If I can concentrate on the work in hand it seems to stop the tremor.

PatV profile image
PatV

for 7 years I've been taking sinimet 25/100 4x a day, with a few time outs for Stalevo. Stalevo wore off suddenly within 2-3 hours and all my bodily secretions were staine orange :( The past year I have added half a sinimet CR with each dose . Went up to 5 times a day but felt over medicated, so cut back.

harding55 profile image
harding55

I started taking meds in Dec 2010 (diagnosed Oct 2007). They had me on carbadopa/levadopa 25/100 3 times a day, then they increased it to 4 times a day, then in October 2012 I was in a car accident and my doctor increased it 6 tablets l l/2 every 6 hours but it was too much for me so I am still taking the 4 but my meds are wearing off in 3 hours. I've called my Dr 3 times but I can't get them to give me an answer on what to do now. I don't want to add more meds to this vicious circle. I'm frustrated!

srarndt profile image
srarndt

I now take sinimet 25/100 4x a day - I used to need 10 before my DBS...

Steve

Bisbee, AZ

etterus profile image
etterus

1.5 x 5 day 25/100

Kadie57 profile image
Kadie57

I could not take levadopa after 9 yrs it would not absorb in my system.My ins did not like that but now I Seniment 35.00 copays unstead of 10.00. I take alot a this Regs and CR's -time released.... don;t worry about the amount if they work! I had DB surgery almost 1 yr ago April and did not need any meds for 2 months, but slowly as always the PD took over but that is ok too, I can;t control it so I m learning how to life with it, see I have a life to live and PD doesn't own me Better days ahead but for now just take it one day at a time - it is the best we can all do. Kadie p.s I also found out 100% lavender oil stops my arm cramps, I was excited about this being so simple.

Danny2401 profile image
Danny2401

I have lived with Amantadine for years, I'm taking 400mgs a day. My legs are a mess, dark purple and swollen, but I have to take it because my balance is really bad without it, I also take Stalevo 200mgs 5 or 6 times a day. So I know how you feel, all that L-Dopa, can't be good for you. I think we are all on a lonely path and what's right for me might be wrong for you. I believe we have to try our meds out, what I mean the less the best, only take what you need.

Annie81963 profile image
Annie81963

I was taking just Mirapex 3 times daily and the tremors went away but I had stiffness and my neurologist put me on carbidopa/levadopa 25/100 3 times daily.I sometimes forget my second dose of each and found that I feel better with only 2 times daily. I was always told to listen to your body,it knows best,so i'm going to do that! I have PD it does not have me..... yet!

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