Alternative Meds

Peter
Is your neurologist a movement disorder specialist? They specialize in diseases like Parkinsons.
The first neuro I went to was not a mds. He prescribed carbidopa/levadopa (sinemet). I read about sinemet and Azilect. Azilect has been shown to slow the progression of PD as well as help with symptoms. Neuro would not prescribe Azilect. Said IT IS TOO EXPENSIVE! Found a MDS. He agreed Azilect is a better choice to start. Also Artane to help with tremors. That was November 2009. I think I can sense some progression now. I have just this week added another med, Requip.
Azilect is expensive. Full cash retail is about $12.50 per pill, one per day.
I have told this story many times. Shortly after diagnosis of PD I started exercising by playing ping pong by myself with the table in playback position (one side up and one side down). I am right handed. One day I hit the ball to my far left. I switched the paddle to my left hand and returned the ball. I just stopped. I have never held a paddle in my left. I was immediately as good with my left as my right hand. I play almost every day. I lose some coordination if I don't play for a few days.
I credit Azilect with how well I am doing.

Don't wait with meds. PD is gaining on you.

Dan

Peter
Are you considering trying Azilect?
I do some exercising with 8 pound dumbells. Not a lot. We do walk quite a bit, weather willing. Michigan weather..........
I take calcium and an eye vitamin. Both over the counter. Also Artane once a day. Prescription.

Dan

PeterDM,

Talk about hit the ground running ... you are there! I commend you for the extensive research you have done.

 

One of your first questions was whether to start meds and some concerns regarding levadopa/carbidopa (basically Sinemet or Stalevo - altho Stalevo basically includes Comtan). Only you know when it's time to start meds. I wouldn't be a martyr, tho. I feel there is a balance - control symptoms to whatever level you are comfortable but not excessive to the point that it might excarbate side effects of the meds. Sounds like you've done your research on side effects of meds.

 

I was diagnosed in 2001 - had symptoms 2-3 years before. I have been VERY fortunate to have had a slow progression - still work full-time and pretty much do everything I ever did ... just with a bit of a shake at times. I have taken Requip - now  the extended-release XL formula - since I was diagnosed. I feel strongly that newbies, such as yourself, should start on a dopamine agonist - Requip or Mirapex - or an MAO-B Inhibitor - the selegiline family. I am a proponent of delaying Sinemet and Stalevo as long as possible because of the side effect - dyskinesia. Not everyone develops dyskinesia. Sinemet or levadopa/caribopa is the gold standard - works the best. BUT ... there is basically no going back.

 

You've undoubtedly learned that on the average Sinemet is most effective for about 5 years. After that it becomes less effective and sometimes causes dyskinesia. The dyskinesia side effect can be worse than the disease itself. This is not true of everyone.

 

You had other questions/concerns. I've babbled enough. I hope you receive some peace by reaching out to others - I commend you.

 

lizzy4451

PS: Lizzy4451
Listed below are some of the side effects of taking Requip XL. I was wondering if you experienced any of these?
Regards
Peter

mild nausea, vomiting, stomach pain, or loss of appetite;
worsened RLS symptoms early in the morning;
diarrhea or constipation;
dry mouth, sweating;
headache;
dizziness, drowsiness;
sleep problems (insomnia); or
agitation or anxiety.

Lizzy4451
Thanks for getting back so soon. You give me hope for staying off those dreaded Levodopa.
I can handle the odd tremor. It's great you've been able to stay away from Ld.

I'm not on any meds for pd, but In the last six weeks I lost 25Lbs which now makes me 172 Lbs. Depression I suspect. I feel better with the weight loss, but need to stop there. I now force myself to eat a bit more.
Probably contributing to the weight loss is the hour of exercise I do each day. I also go rock and roll dancing twice a week.
The exercise seems to keep the tremors at bay.
I've not been one for sport or exercise. Because I feel the good effects I'll be trying hard to keep it going.

I have my second nero visit coming up at the end of the month. On my first visit he already asked me about going on meds. At that stage I had done no research. So my current plan is to say no. When the time comes it sounds like Requip or Mirapax. Which it sounds like you've had great success with. However I am aware meds work on people in different ways.
Your input has been great. Thanks

PeterDM

Hi Peter

You said you were looking into Mucuna Prurience. I tried that and I don't recommend it. I ordered some from a company in India, and it arrived in the form of a pink powder in plastic containers which a scoop in each. There were no instructions regarding dosage nor a list of contents. It could have been anything. Anyway, I started taking one scoop twice a day in a glass of water. After a week it had made no difference to my leg drag or arm tremor, but it did make me throw up violently. Now I know what they mean by projectile vomiting! Another technical point which I missed is that although this preparation may contain dopamine, it cannot cross the blood-brain barrier, so it merely floats around the body and makes you sick. Only a dopamine precursor can get the dopamine to where it belongs. I stopped taking it because my wife (wisely) flushed the whole consignment down the toilet in case I was tempted to try it again.

Beware in general of herbal remedies. They're not regulated, so we don't know whether they contain what they're supposed to contain, and they may also contain undesirable ingredients.

I was also desparate for relief from my symptoms and at the same time didn't want to start on drugs for fear of the side effects. I delayed starting for about seven years after the symptoms started, and now I take Sinemet 25/100 twice a day and sometimes only once a day (more makes no difference), which I figure should be less harmful in the long run than a higher dosage. Time will tell. Now at least I can walk without leg drag and I don't spill food from my fork (my tremor is on the left side), which is very embarrassing in company.

I exercise daily and find that strength training (weights) does the most good, but I like cycling most of all because on the bike I feel absolutely normal: normal balance, no tremor. It's weird, but there's apparently some neurological reason for this. Go to Google and enter cycling + Parkinson's Disease and you'll find some interesting stuff on the topic.

It's nice hearing from you. I agree that you should delay the meds as long as possible. Courage: you may be one of the lucky ones with a very slow progression and symptoms that don't interfere much with your daily activities. .

PeterDM,

I do not take any supplements or vitamins. However, I am suppose to be taking Vitamin D. I am at a PD Young Onset Conference today/tomorrow. Today a neuro speaker said that 40% of people with PD are low on Vitamin D.

 

Dan,

Below are some articles about Azilect's claim to slow the progression:

 

http://www.huffingtonpost.com/2011/10/17/azilect-parkinsons-drug-fda_n_1016612.html

http://www.medpagetoday.com/Neurology/ParkinsonsDisease/29090

https://www.michaeljfox.org/foundation/news-detail.php?panel:-tevas-azilect-data-close,-but-no-cigar-for-parkinsons-delay-claim 

lizzy4451

Thanks to you all.
lizzy4451, I'll look out for that link, thank you. Love to go but I live in Australia.

I wonder how you all feel regarding a cure in the pipeline... There seems to be a reassuring amount of research going on. I think we should see some positive results in the next five to ten years. Best I can tell, they have only been getting serious in the last three to five years.
Off for my 30min bike ride, which seems to have a positive effect.
Best wishes to you all.
PeterDM

Perhaps some good news....

http://www.affiris.com/html/de/presse_medien/pressemeldungen.html

lizzy4451 said...
I am at a PD Young Onset Conference today/tomorrow. Today a neuro speaker said that 40% of people with PD are low on Vitamin D

It would not hurt to get your blood levels of vitamin D checked:

www.lef.org/newsletter/2010/0716_Low-Vitamin-D-Levels-Can-Predict-Parkinsons-Disease.htm?source=search&key=parkinsons%20vitamin%20d
researchers at the National Institute for Health and Welfare in Finland report in the July, 2010 issue of the AMA journal Archives of Neurology the finding of a correlation between reduced blood levels of vitamin D and an increased risk of developing Parkinson's disease

Finish
Glad you are going to see a PD specialist. I assume he/she is a movement disorder specialist. Seeing a MDS is a must. When I was first diagnosed it was a general neurologist. He gave me sinemet (carbidopa/levadopa. After some research I found out the difference in neurologists and found a MDS. Stopped sinemet. Save it for later. Started Azilect and still taking it 3 1/2 years later. I believe the claims that Azilect slows the progression of PD.

Dan