Is there an alternative to Sinemet?. I am allergic to it but I need something to help me retain my balance

[glenz]

[Hikoi]

Sinemet is called the 'gold standard' for treatment. It is the main drug. When you say allergic glenz what do you mean and how long did you take it?

[glenz in reply to Hikoi]

About 2 years ago I was told I had Parkinsons and was given PK-Merz (amantadine) which immediatly stopped my shaking. About 4 months ago I told my Dr that I was loosing my balance and he prescribed Sinemet. As soon as I started (2 days) my throat would get tight and I could not swallow. I stopped taking Sinemet and for the next 2 weeks I could not eat. I lost 31 lbs, I am just now starting to eat almost normally. I have a Dr appointment in afew days and I expect him to prescribe sinemet again and I would like to know if there is an alteritive

[ozepook47 in reply to glenz]

An interesting question. My first thoughts are, you are right, it seems to be an allergic reaction, especially after hearing of the tightness in the throat, but to what are you allergic? This is what I would do:

1. If he wants to challenge your previous reaction, suspecting l-dopa, ask your doctor to prescribe Madopar not Sinemet.

Reason: Sinemet is l-dopa + carbidopa (an enzyme that helps retard the breakdown of the l-dopa so its effects last longer in the body. Madopar is also l-dopa but has benserazide, a different enzyme that works the same way as carbidopa). If you take a Madopar,at the same strength of l-dopa as the Sinemet, and if you get the same reaction, you are probably allergic to l-dopa itself. BUT....if you don't get the reaction, your allergy is due to something peculiar to the Sinemet brand. It may be the carbidopa, or may be an allergy to one of the fillers or colouring agents used in making Sinemet tablets.

2. In the doctor's office, before taking the Madopar, ask the doctor to show you the following (ie check it for yourself)

a) See if the doctor has a defibrillator that is in working condition in his rooms, and that it is easily accessible and he is confident to use it in an emergency heart fibrillation.

b) make sure he has at least one emergency adrenaline injection on hand (check the expiry date). This must be used immediately in the event your throat siezes up and/or your breathing is affected.

c) He may offer other back-ups.

d) If you are satisified such emergency equipment is ok, take the Madopar. Refer to #1 above.

If the doctor does not want to try this challenge, and I wouldn't blame him, he will probably prescribe an anti-PD drug from another group. This is OK, but just be aware of the adverse effects that might occur from that particular drug.

Why all the precautions? Well, a true severe allergic reaction (like someone allergic to peanuts, where a trace of peanut can cause death very quickly) is very dangerous and you should ensure everything to assist is at hand. He might even want to do this in a hospital where emergency services are day-to-day routine. Sometimes people get an adverse effect from a medication, but it is not an allergy. Emergency procedures are not going to be necessary. Treatment may be based on relieving symptoms, or just observing you and allowing the reaction to wear off.

Once again, I have gone into over-drive, but I hope you have a better informed opinion about your incident.

[michaela13 in reply to glenz]

I have the same problem. I break my pill in half and take it at different times about 1 hour apart and that seems to really help. I was hoping there was something else to take also.

[Emily1957 in reply to michaela13]

Medical cannibas

[shall1019]

I can't take it either. My blood pressure shot up to over 200. I'm waiting to be prescribed something to go with Azilect which I've taken for 2 years +.

[alanrob]

most of the meds have some levadopa in them,alternatives to sinemet,as far as i,m aware are stalevo,entacapone,madopar etc. hope that helps.

[glenz in reply to alanrob]

Thanks for the info. No else seemed to know

[Hikoi in reply to glenz]

Glenz

I think we are very restricted in our choices. Sinemet is carbidopa/levadopa. In Europe there is also Madopar which is Benserazide/levadopa.

You may be offered dopamine agonists which work in a slightly different way.

Your dose may have been too strong.

There are other medications but they mostly help levadopa to work better.

There is alot of information on line. Here is the link for the Mayo Clinic

mayoclinic.com/health/parki...

This is the from the American Parkinsons Disease Foundation.

The types (“classes”) of medications available to treat Parkinson’s on the market.

Carbidopa/Levodopa therapy

Dopamine Agonists

Anticholinergics

MAO-B Inhibitors

COMT Inhibitors

Other medications

Carbidopa/Levodopa (Sinemet®). The most potent medication for Parkinson’s is levodopa. Its development in the late 1960s represents one of the most important breakthroughs in the history of medicine. Plain levodopa produces nausea and vomiting. It is now combined with carbidopa to prevent this side effect. The well-known combined carbidopa/levodopa formulation is called Sinemet®

There are many different preparations and strengths of carbidopa/levodopa, including longacting forms and a formulation that dissolves in the mouth without water, called Parcopa®. There is also a combined formulation that includes the COMT inhibitor entacapone, called Stalevo®.

It is important that people with Parkinson’s are aware which levodopa preparation they are taking because there are so many different pill sizes, strengths and manufacturers. Be careful when renewing prescriptions at the pharmacy because the accidental substitute of a different formulation may lead to an overdosage or underdosage.

Carbidopa/levodopa remains the most effective drug for treating Parkinson’s. The addition of carbidopa prevents levodopa from being converted into dopamine in the bloodstream, allowing more of it to get to the brain. Therefore, a smaller dose of levodopa is needed to treat symptoms.

Some people with PD have been reluctant to take it, believing it to be a last resort. But most neurologists agree that delaying treatment too long is unwise, and may put a person with PD at risk for falling. The decision about when to start carbidopa/levodopa is different for every person with Parkinson’s, and requires consideration of potential benefits, risks and the availability of alternatives.

pdf.org/parkinson_prescript...

[glenz in reply to Hikoi]

Thank you very much your info will be most helpfull

[PatV]

I'm 8-9 years now on sinemet and am getting painful swelling in knees and hip area. The more water I drink, the more painful. Then when meds kick in, the swelling goes down, I start kicking and twitching, and have to RUN to pee! Am I develping a sensitivity to the levodopa? Is this going to get worse for the rest of my life? Arggg!

[alanrob]

there are sum drugs that people cant tolerate,what dose of sinemet are you on?too much can cause different side effects,also sinemets effect becomes erratic after several years on them.best ask your neuro about whats happening.

[glenz]

Thanks for answering. Ii was taking one half of a 250/25 nite and morning

[ldq1997]

It is said that synthetic levodopa becomes toxic after taking it over a long period of time. (The levodopa in Sinemet and other prescription drugs is synthetic) Apparently natural levodopa (mucuna bean extract) does not become toxic so quickly. Some authorities claim that natural mucuna bean extract never becomes toxic, but others say that if you take enough of it over a long enough period of time, it will become toxic just like synthetic levodopa.. Dr. Andrew Weil, a prominent authority on alternative medicine states that "Mucuna (Mucuna pruriens) has long been used as a treatment for Parkinson's disease in Ayurvedic medicine, but few studies of its effects or effectiveness have been done in the West. The most notable was a very small clinical trial (only eight patients) carried out by British researchers who published their findings in 2004. The rationale for the use of mucuna is that it is a natural source of L-dopa (Levodopa), a compound which is converted to dopamine in the brain and has been used for many years to help relieve symptoms of Parkinson's. The British study compared the standard dose of L-dopa to a powdered preparation made from the seed of mucuna. It showed that the mucuna had a more rapid onset of action against Parkinson's symptoms and that its positive effects were longer lasting than those of L­dopa. Based on their findings, the investigators concluded that further and larger studies of the mucuna seed powder preparation are warranted, but to my knowledge, no human studies have been done since or are underway. The British research was published in the December, 2004, issue of the Journal of Neurology, Neurosurgery & Psychiatry. " ( drweil.com/drw/u/QAA400744/... )

There is a wealth of information on natural alternatives to sinemet and other prescription drugs. It will take some work to look it up. I forget the name of the most commonly used mucuna bean extract from India that many people use. If the prescription drugs make you sick, then you will just have to get down to work and do some research on the alternatives. Believe me, there are many alternatives out there. The problem is that our medical establishment does not want anyone to know about them and they do not want it known that many Parkinson's patients get along without taking any medications. They are in the business of making money, not of helping Parkinson's patients.

[maryalice in reply to ldq1997]

idq,

Do you know if you take the mucuna bean alone or do you have to take it with carpidopa in order for it to reach the brain? I'd appreciate your help.

[ldq1997 in reply to maryalice]

Mucuna bean extract is a natural product which most people take in order to escape prescription drugs. If you want to combine it with prescription drugs, this is your decision to make.

[maryalice in reply to ldq1997]

Thank you for your help. Someone posted a while back that you had to take the carpidopa with the mucuna bean to get any benifit, so I was confused. I ordered mucuna bean capsules, but haven't started taking them yet. Do you think they are as good as the extract?

[glenz]

I certainly agree with you about the medical establishment. I will do more research and want to thank you very much for the info it is much appreciated

[Hikoi in reply to glenz]

epda.eu.com/en/parkinsons/i...

This site has a comprehensive list of alternative therapies. May be a good starting point.

And further information here

nwpf.org/wellness/PhysicalH...

[glenz in reply to Hikoi]

thank you very much I will see what I can learn

[isis6361]

Some pwp get on better with Madopar than done met and others get on better with agonists that leopard especially people with phenotype Parkinson's. you are all individuals and your responses to mess are as individual.

[Hikoi in reply to isis6361]

Isis usually i can work out what your typos mean but not this time! whats this about a leopard? And what is phenotype PD?

[ldq1997 in reply to Hikoi]

According to Google Phenotype PD is tremor dominant PD. It has something to do with classifying PD patients as tremor dominand and non-tremor dominant.

[Hikoi in reply to ldq1997]

Thanks for that idq

[isis6361 in reply to ldq1997]

Phenotype s means variation so it could be ipd as a diagnosis but with a different response to medications. Different cultures often respond different ways to medications

[Hikoi in reply to isis6361]

OK and the leopard? (See below) i have trouble interpreting this comment!

"Some pwp get on better with Madopar than done met and others get on better with agonists that leopard especially people with phenotype Parkinson's. you are all individuals and your responses to mess are as individual."

[cabbagecottage]

Wow. Why has this not come up before .

John has been on sinemet for over eight years. I had absolutely no idea meds could caus effecta effect like they do so we continued to blindly use sinemet

My husband has all you say the choking dystonia in his jaw and neck in too of that what they call, continually tongue pumping ,

We put it down to progression they insisted Sinemet the gold ,

We have recenetky started the madapor instead . He did impr Be and was on more bug the swallow problem is back again and choking.

I have always worried he was allergic because he is so sensitive to other meds such as Digoxin and hyoscine.

I would love be to just stop them all for a month but afraid to do so , he is bed bound on a little puréed food and all drinks thickened he is 84 . Mentally sound albeit slow and struggles to find the words often .