Does any know what I should do? - Cure Parkinson's

Cure Parkinson's

25,550 members26,870 posts

Does any know what I should do?

dstarnes profile image
17 Replies

To control my Parkinson I take 12 meds per day. Sinemet, Azilect, Mirapex and Amantadine. Diagnosis was 5 years ago @ 50y/o. I still work FT. My medication regimen works for a while then it is back to the MD and medications are changed and/or a new one added? MD wanted me to take 2 Mirapex 3x/day. There is no way. I got so drugged I was crazy. I am doing well @ present with only a few breakthrough tremors..But by the 3-4p everyday my legs hurt and shake so bad. Does any know what I should do?

Written by
dstarnes profile image
dstarnes
To view profiles and participate in discussions please or .
Read more about...
17 Replies
compucure profile image
compucure

Hi that sounds like a heavy dose of meds. Have you tried reducing them? Tony

dstarnes profile image
dstarnes in reply to compucure

My specialist says it is a very low dose of meds?

driller profile image
driller

Good morning from FLorida; First you should know that there was a message on the Pd foundation web site last Friday stating Mirapex was being stopped because it may cause heart failure. This came from the FDA. Youmight want to check on this.

Also I think you might be over medicated

Regards;

ERIC

soup profile image
soup

Are you seeing a specialist in Parkinson's or just any old neurologist?

Do you have a Parkinson's specialist nurse? If your General Practitioner is doing all the prescribing your really need a specialist. Beware of stopping your medications without advice it can be very dangerous. Seek specialist help.

Are you in USA or UK? There is a network of specialist help over here in the UK and the Parkinson's UK helpline with a nurse on tap.

All those meds have a different action so you are not having too much of any one sort of drug but you do need a supervised period of drug adjustments perhaps.

Sue

dstarnes profile image
dstarnes in reply to soup

I see a Parkinson/Movement Specialist and have for 4 years. She says that this is a very low dose of medications for Parkinson.

Have you questioned the fact with the specialist that you may be overdosed?

dstarnes profile image
dstarnes in reply to

Yes I have...so meds were decreased slightly which has helped but more frequent break tho tremors.

I should ask for a complete reassessment of your medication.

I have found that even with the doctors they dont always know best, and they are not the one's having to deal with the consequences.

I wish you all the best

Goof55y profile image
Goof55y

hi. you seem to be on a lot of medication . I was 50 when diagnosed 10 years ago .I will be 60 end of november,& retired yesterday to have time to do other things. I am on slow release 1 a day mirapexin(will have to look into this one)And stalevo 4 a day which have been BRILLIANT ,. for my stiff joints. I think I overdosed this week, on my stalevo, thought I hadn't taken it so took another one, wow my body didn't like that!! Slept it off, so the amount of tablets you are on seems over the top. I have a tremour, but rather that than all those pills

I was able to reduce my sinemet from 6 to 8 pills (100/25) a day to 11/2 a day. I was surprised myself that the natural L-dopa worked so well . I take the natural 3 times a day with 1/2 a sinemet. So, I have less side effects now since I take the supplement, mucuna pruriens, which is called Zandopa. Quicker on time, and longer lasting. I order it from India. There are other brands for mucuna, too but Zandopa's been tested by FDA.

JWebb994 profile image
JWebb994 in reply to

What is natural L-dopa? Where do you get it?

98Rob profile image
98Rob

Make sure you are going to a neurologist that specializes in Parkinson's/movement disorders. You also may want to inquire about DBS surgery. It did wonders for me. God luck.

charlton profile image
charlton

nobody has mentioned Azilect Modopar or Ropinerole the combination works for me

PatV profile image
PatV

The minimum dose, I was told, is 25/100 sinemet 4x a day. I recently upped it to 5x a day plan xanax for the pain. Tried Azilect, too much diskinesia. You couldn't pay me to take Mirapex!! Yes, make sure you are seeing a PD specialist.

Cfritts profile image
Cfritts

Be careful on the Mirapex. I hallucinated and and was paranoid on it.

Pete-1 profile image
Pete-1

Amantadine doesn't seem to get mentioned on this site very often. It has a gloomy report on wikipedia. The folowing paragraph was taken from wikipedia.

Adverse effects

----------------------

Amantadine - has been associated with several central nervous system (CNS) side effects, likely due to amantadine's dopaminergic and adrenergic activity, and to a lesser extent, its activity as an anticholinergic. CNS side effects include nervousness, anxiety, agitation, insomnia, difficulty in concentrating, and exacerbations of pre-existing seizure disorders and psychiatric symptoms in patients with schizophrenia or Parkinson's disease. The usefulness of amantadine as an anti-parkinsonian drug is somewhat limited by the need to screen patients for a history of seizures and psychiatric symptoms.

----------------------

Sinemet or at least the Levodopa drug in Sinemet is the best drug we have in treating PD. When your MD increases the doses of your drugs, I would hope that this is the drug he increases rather than any of the others. On the other hand if you have been taking Levodopa (Sinemet) for quite a long time or are taking big doses then you may experience dyskineasia and / or hallucinations. In which case the dose may be better if reduced. Possibly reduced but taken more frequently.

Mirapex - a Dopamine agonist famous for encouraging obsessive behaviour especially in larger doses. Also very difficult to stop taking due to unpleasant withdrawal symptoms. I have been taking Mirapex for over 6 years. It seems to have helped elminate a good deal of bradykinesia and stiffness in the torso and if I stop taking this then I get quite severe RLS and for a strange one using Mirapex seems to have got rid of my dandruff.

Azilect (Rasagiline) is an MAO - B inhibiter (Very similar to Selegiline). Normally an MAO chemical helps metabolise Dopamine once that Dopamine has been used. An inhibiter of an MAO helps to preserve any Dopamine floating about so that it can be re-absorbed and reused. So an MAO inhibiter destroys the chemical that destroys the MAO. The destroyer is destroyed.

I wonder if your employers could reduce your hours so that by the time you feel rough in the afternoons you will be going home to rest?

All very complicated and I must say that I have no medical training and so for definitive answers you should talk to your doctors

Pete-1 profile image
Pete-1

How many mg of each drug how often over the course of a day?

You may also like...

Peripheral neuropathy : numbness, tingling, discomfort. What should I do?

for example bc I feel like I will fall over if my leg decides to go numb on me. I believe my whole...

what to do?

there’s no reason to keep taking medication if it doesn’t help you. I’ve been medication free since...

I believe that 50% of what experts know is 100% wrong

add your examples of where \\"expert advice\\" has changed 108 degrees.

Does anyone else have eyelid tremors? And what do you do to stop them?

My eyelid tremors have been getting worse. Does anyone else experience eyelid tremors? What do you

What do I do now?

2021. Once diagnosed I was offered a choice of sinemet or pramipexole. At the time I was stunned...