Should I start Levodopa right away?

[Richard]

Hi Ron,

I am also 55 and was diagnosed three years ago. Initially I did not start L/C or any meds as I had joined a clinical trial right after my diagnosis. Just about 18 months later I started taking L/C and after a month I settled at 100/25 x 3 pills a day. My initial symptoms were not tremors but mostly stiffness on one side (arm & leg) and my gait was a bit off. I am a fair weather runner and during the spring to fall season I run 2 to 3 x week. I hate the treadmill so in winter I just walk and do yoga and TaiChi. These all seem to help with maintaining my mobility and as everyone else already mentioned, keeping moving is definitely the key. I do experience mild levodopa induced dyskinesia from the L/C meds and I also take rasagiline 1mg x day. Coming up on two years since I started the L/C and I don’t regret starting it cause it does help. For me it also calms the jitters and anxiety I get from PD. I hope this information helps and I wish you the best of luck in managing this disease.

[Don]

Ron
What i was to say has already been said in various ways but it deserves emphasising.

Numerous studies show long term use of levedopa induces dyskenesia which may be worse than the tremors it is trying to treat. The side effect is bad enough for some drug companies to be researching antidotes!

Despite my neuroligist’s objections I have cut back levedopa from 800mg/day to 200mg with no noticeable affect. Perhaps I am lucky as I do not suffer from many of the other symptoms of PD.

Good luck and have a look at the research.

[Susan Watkins]

I was diagnosed in 2019. Resting hand tremor, jerky movements, stiff legs and hip upon resting, blurry vision watching tv, blurry vision reading which I never had an issue with my eyes except for nearsightedness. My Neurologist is amazing abd started me on Azilect.5 for one month and increased to 1mg daily since October 2019. I had various issues, muscular/skeletal along with the infamous diagnosis of fibromyalgia, which my doctor says you are developing something and until it manifests its fibromyalgia, Rheumatologist basically told me the same thing, vague symptoms of convective tissue disorder which they agree sometimes go hand in hand.
Now if I were you I would discuss an MOA-B, pr other early treatments. Tgey are like free radicals orchestrating my dopamine. He akso suggested reading the Michael J Fox books. I got the latest for Christmas and it gave me hope and inspiration. Getting back to the Azilect, my Neurologist calks me the poster child for the drug. My memory has improved significantly, no more stiff legs and hips, i can make a quick turn and not look like the town drunk stubbling to catch my balance. If anything I suggest like others exercise as being the key and in my humble opinion I think Pt is best. My balance is incredible, I am doing things in pt I would never have done before. We are also blessed to have a pt that specializes in pelvic floor exercises. I was finding that I would go to bathroom and then wothin a short period of time would need to go again. So as a preventive I started working with her in advance as incontinence is very common so if I can be proactive I will. So if you take anything anyway from this you do not have to take any medication as they will only control symptoms and maybe sometimes not, but don’t delay as meds like the MOA-B’s, which there are more than one that do not contain any levadopa. I also read Understanding PD a self help guide, written from the perspective of a Neurologist that treated a Neurologist with PD. Only stick to PD forums and the Michael J Fox foundation website. I am blessed to have a dr that takes anywhere from 30 to 50 minutes 3 x a year because I ask questions and because I do I am way ahead of the game and not worried about tomorrowor what tomorrowis going to look or feel like. Stress is also a biggy to get rid of..I know easier said then done and managing pain. I use Volteran gel, ice heat and tens unit as pain meds and PD can be tricky, plus not my bag. Best of luck in your journey and there are many therapies TO START BEFORE LEVIODPA.

[Beth T Browne]

Beth here. I may have responded to this question somewhere, so sorry if you get it again.

I was diagnosed July 2020 due to tremors in my right hand. I thought it was thyroid, but my thyroid doctor checked my blood again and said I needed to see a Movement Doctor, so off I went.

MRI was how she diagnosed my lack of Dopamine. She prescribed LD. I took it two weeks, and was so nauseous I could not eat. Lost 5 pounds, and I only weighed 98. Still trying to gain it back. Tried Rytary. Had no nausea but had no appetite. Also, had more anxiety, and my stamina was down, so exercise was hard. I finally decided to take nothing. I am back to feeling so much better. I do take 2 Dopa Mucuna 15% daily. My first doctor suggested it. I get it from Amazon. It has 120 mg of LevaDopa and 800mg of Velvet Bean which I think has a little LevaDopa in it. I also put 1 tsp of Mannital sugar in my one cup of coffee daily. My second doctor said that sugar causes anxiety. I don’t feel any different. The tremors in my right hand can be better some days, but I still have difficulty at times using a fork.

I exercise 2x a week with a group for strength and balance. My balance issues are not noticeable to others and I can walk down a hallway with no problems. It is in my 2 bedroom apartment my balance appears more. I climb 3 flights of stairs once, sometimes twice, daily.

I am 85, and have a leaky heart valve, and a partial collapsed lung, as I have had problem with allergies since the 80’s and they can make me very sick. I probably will pass before my PD gets too bad. However, both my grandmother and great grandmother lived into their 90’s. One 93 and one 99.

I have changed doctor’s two times and will not go into detail why but basically if a doctor tells me something I find out is not the case, or if a doctor isn’t helping me, I move on. I grew up in a doctor’s home who was loved by the entire town, so I probably am picky. I will meet my new doctor on the 25th. She was recommended by both a man and a women, so I think she may just be the one.

I live in an apartment and have lots of people around and management has parties and activities we can participate in if we want. Great workout room where I should be using the bike and treadmill more. I don’t sit around, as it makes me feel tired. I am moving daily, but get in bed around 8:30. Sleep is an issue.

I am think about taking 1 LevaDopa pill daily, cut in half. I have a digestive issue and that and being very small may be why the pills bother me.