Which medication to begin with?

[gingerj]

I was diagnosed 18 months ago. I have a neurologist appt next week and feel that I now need to request meds. I was thinking of starting with Rasagaline then at later date L-DOPA. I prefer to have a say rather than simply accept. Can anyone offer advice based on experience?

[Enidah]

I started on sinemet right away, 25 - 100 three times a day, but I know several people who started with azilect, rasagiline, and that worked quite well for them for at least a few years. I think you have a good plan. You don't mention your age but from what I have read people with young-onset Parkinson's especially don't start right away with the levodopa.

[gingerj in reply to Enidah]

Thanks Enidah. Im 49 now I guess that's not young onset. One thing I read about azilect is you take just take one a day as opposed to three times a day sinemet. Side effects concern me but my PD symptoms are affecting my work as a postman and life in general. Dexterity is getting worse.

[park_bear in reply to gingerj]

Side effects with Azilect are unusual. Based on what I have been able to discern it helps about half the people that try it. I think you have a good plan. Start with the Azilect and if that does not help add the Sinemet. Get the controlled release version of Sinemet rather than immediate release. Twice a day with Sinemet can be sufficient at the early stage.

[ion_ion in reply to Enidah]

Enidah,

How many years ago did you start Sinemet? How is working for you? Any sides effects? Did it fixed the tremor, too?

Thank you.

[Enidah in reply to ion_ion]

I started sinemet almost 5 years ago and it has always worked well for me, no side effects. At this point I take about five a day. I do not have Tremor dominant PD. It is very effective treating my gait, pain and other problems.

[gingerj]

Thanks Park_bear very helpful advice.

[PDConscience]

I suspect that the reason you're bothering to keep/attend your upcoming appointment is owing to the fact that - somewhere deep down inside - you actually realize that the experience of a single qualified neurologist outweighs the guesswork of a thousand armchair 'experts'. Defer to the professional's recommendations.

[ion_ion in reply to PDConscience]

Sometimes the doctors are acted like robots. I got better advise from the "armchair experts" than my motion disorder doctor who told me if I do not start Sinemet right away I would be disabled in 3 years and dead in 5.

[Islandhappy in reply to ion_ion]

I went to the neuro, she asked a few questions, did a couple of tests and handed me a sine met prescription, saying tha I had Parkinson’s. Period. This website has empowered me and its advise has helped immmeasurably

[alaynedellow]

Hi. I was diagnosed 2 years ago at 53 and began with Azilect ( brand name for ragasilene) i was told it was a brain protector, i felt no difference but continue to take as a protector. I began taking Mannitol ( a plant based sugar) just over 3 weeks ago and within 10 days my right arm has come back to life- my mood is improved too. I have joy again and a right hand! I dont have on/off periods or have to eat at set times which i inderstand is common with medications. Try it theres nothing to lose though i inderstand dosen't work for everyone but like you being young (finally i am young again!) and PD being a long term disease i want to avoid prescrip meds as long as can.

[ion_ion in reply to alaynedellow]

How much Mannitol do you take a day?

[alaynedellow in reply to ion_ion]

Hi ion_ion

I take 1 tablespoon of mannitol in coffee in morning-

[gingerj]

I agree PDConscience but I do prefer to understand my options. Also I'm not full of confidence in my neurologist as on my last visit she told me she's not an expert when it comes to PD

[gingerj]

Hi alaynedellow I'm willing to give mannitol a go. Anything within reason. Where do you buy it from?

[alaynedellow in reply to gingerj]

Hi gingerj

I get mine from Don mccammon- doctor who produces it. Email him direct [e-mail]

He ships from US to me in France - about a week/10 days for delivery

Good luck keep us posted on results-

[Islandhappy in reply to gingerj]

bulksupplements.com

[healthabc]

i was dx'ed at 48, now 50. tremor dominant, both sides of body at this point. began with artane, after a yr added propanolol. it has helped, but regardless, i am looking forward to ldopa relief! Trying to hold off on ldopa as long as possible.

[gingerj]

Hi healthabc. I'm similar to you in that my tremor is the most significant problem for me. I too was hoping to hold off meds as long as possible but now want to feel a bit more normal. Tremor, stiffness and weakness starting to get me down. I'm hoping for improvement with meds. Fingers crossed.

[Astra7]

I started with azilect and then a year later added madapor. I am also trying mannitol and it does actually seem to work. I'm only taking 1 heaped tsp a day. I'm 53 as well but not much tremor.

[Donzim]

Not sure why you are deciding what to take...isn’t that your doctor’s job? Different cases have different symptoms so need different meds. That said, we opted to use Zandopa(mucuna) rather than go on sinemet right away....wanted to put it off until he really needed it since neuro drugs don’t last very long, usually about 5 years. Zandopa worked very well and delayed taking sinemet for several years as a result.

In later years, My husband went on an MAO inhibitor and the result was a hellish year of hallucinations. It took six months and daily high doses of niacin to stop them....that’s how long the doc said it would take to clear his system and that’s exactly what happened.

[fordy40]

Try to postpone taking medicati0on as long as possible.

[Hidden]

search: Treating Seniors (Mayo Clinic)

[only1gab]

Vitamin B's chiropractor and less chemicals. I feel great.

I'm sick of chemicals and they seem to cause the same symptoms as PD

A LOT less pain, falling, confusion, depression and overall happiness.

I only take one dose of my two meds a day

I watched my father and grandmother listen to docs. They suffered greatly and became totally bedridden and dependent. I've decided that's not for me. At least I'm fighting it

This is working for me

Stay positive and not afraid!!!!!!!!

Do some research and enjoy your life. I am 56 I had a stroke 4 years ago and got hit hard with PD too

I am alone BUT

At least I'm not afraid of the future

Do some research

I don't know about you but I have nothing left to lose

[Hidden in reply to only1gab]

copy: "hello Roy I was just today from doc Costantini, I asked him if I could remove or diminish levodopa, He said no, because vitamin B1 (high dose thiamin HCL) has a restorative effect on the surviving cells that will be forever as long as it is used, but levodopa reduces stress and the chemical work that the few remaining cells (for example, 10.20.30% of the total according to the years of PD passed without b1 ) have to do to produce all the dopamine necessary for the body.

He made me notice the fact that if one removes the b1 even for a week or two is not affected, but if one removes the levodopa is affected instantaneously, this precisely because the levodopa serves the few living cells to produce with less chemical effort all the necessary dopamine. The b1 saves cells from death by the disease and makes them survive long and forever stabilizing it.

According to him levodopa does not cause dyskinesias and showed me a video of a patient who he took care of was quite serious that moved everything from sitting because he took so much levodopa, after a three month b1 was still stiff but walked and without convulsions , this without changing anything in the medicines but only with thiamin hcl.

I asked him why there are ups and downs, in the days or in the cold seasons and he told me that it does not depend on a worsening, but on the variable response of the levodopa that is subject both to the diet that changes the reaction of the body to the cold. I hope it will help you even if I think you will not like it, and that is perhaps a repeating things that the doc has already said. But that he saw me in response to my questions.

The good news is that thiamin stabilizes the disease forever."

[only1gab in reply to Hidden]

I got so excited I lost your link. I'm so sorry but could you send it again?

[Hidden in reply to only1gab]

markmaunder.com/2012/07/22/...

[only1gab in reply to Hidden]

Thank you again!!!! I sincerely pray that God blesses you in every way❣️