im 39 and had parkinsons for 3 years,im on the highest dose of pramipxole.should i go on levadopa

my leg has started to drag and on occasions cant put weight on it so struggle to hand refuses to move when i try to tell it to .esp when driving and changing neck is stiff all time.again noticable when driving,,ive seen my pd nurse yesterday who said,the next step is levadopa but as im so young,the side effects could be bad in 10 question is,should i go on levadopa or put it off fas long as i can??

14 Replies

  • Great question. You could try adding azilect.

  • thanks also on sertraline for depression,not sure how these would react!

  • I'm on Paxil for depression. My Neuro prescribed Azilect and monitored me for problems. I have not had any. Good luck.

    Hugs, Terri

  • Max it is a very difficult decision. I would say yes especially if you are holding down a job as well. In the end you have to decide but i know many younger onset people all on L dopa. All the best.

  • thanks,might be best for my short term future andd working life if l dopa helps,the side effects kick in 10 years later so im told but with pd and meds nothing set in stone!

  • I can sympathize with you, because I'm battling the same question. I've had PD for almost 15 years and still haven't taken levadopa. It just seems like the side effects are worse than the disease. I'm taking Mirapex and Amanadine and they seem to be working, but not as well as they used to work. We are all so different that you have to make that decision for yourself. My doctor gave me a prescription for a very low dose of Sinemet, I got it filled, but couldn't bring myself to take it. He said that some people have side effects and some don't that's all he could tell me. I think I'm going to try some alternative options that have been posted on this site or I've heard and read about on the Parkinson's Recovery Radio on the web beneficial too. You may want to take a look at it. You just have to google Parkinson's Recovery Radio and click on radio show. Physical therapy can help too, I'll pray you make the right decision.Blessings.

  • Max, I am the same age as you and also diagnosed 3 years. I moved onto Levodopa after trying dopamine agonists and lastly Pramipexole which did not agree with me. I actually had very similar symptoms to you with the shoulder pain etc. I tolerate Levodopa no problem and have great movement when it kicks in. I was told that if you needed to move on to Levodopa move on to it and get the relief now when you need it. My PD Nurse told me there were plenty of treatments on the market and due to come on the market to add in to deal with any blips in the future and also that drugs were now being revisited as it was found that the 2nd time you visit a particular drug it may react totally differently in the body.

    Now the only thing to prepare for is that Levodopa treatment is very different from being treated with a dopamine agonist. Do not let them give you a drug holiday before you switch. Levodopa is calmer drug that a DA and you will feel different emotionally rather than physically but all good. Plus take it bang on time, do not wait 5 or 10 minutes because you are doing something or you will start to go off. Also bear in mind Levodopa standard kicks in after about 15minutes on a fairly empty stomach and Levodopa Controlled release takes 30 to 45mins so you will need a booster to kick start you in the morning. That brings me on to Levodopa is absorbed into the body differently to a DA so read up that.

    Please would you keep in touch with me because of our age/diagnosis being the same.

    Best of luck Buddy.

  • cheers for a good answer!how long have you been on l-dopa and have you had any side effects?i was told side effects may not kick in for 10 years!!

  • It's a very difficult, personal decision to make. I was diagnosed at age 35 (15 years ago) and held off taking L-dopa for 7 years. During that time I worked with a variety of alternative treatments which all helped, but after 7 years I needed the benefits that L-dopa brings. It still brings benefits, but it also brings many problems as well, but I don't think I could or would have done things differently. I think you have to make the best decision you can at the time. As Swami Sivananda the great yoga master of the last century, said, 'Adapt, adjust, accommodate'. It helps me not to stay too fixed on a particular outcome or state of being, but to work with what we have at the time!

  • I'm 53 my PD nuro just tried dropping my sinemet due to the side effects for young people. I guess I was happy to be considered young.(sorry trying to keep my sense of humor) I tried going down to 1 25/100 4 times a day and 1 25/100 sinemet CR 5 times a day but things got bad again. Now taking 1 1/2 tablets every other does. I think the thing is to find a balancing act between the symptoms of PD verses the effect of the meds

  • They told me when dx at 47 from now on it would be a give and take situation. Just started stalevo at 54. I say its all about quality of life so i take

  • I have been living with PD for over 10 years. I was scared to begin using Levodpa for the same reasons you are. My quality of life was vastly improved once I began the levodopa.

    The best advice I can offer is to base your final decision on your quality of life.

    Best of luck to you my friend.

  • iwhy are you asking such a question on a blog ?

    is your doctor a specialist in PD , if not locate one and ask him/her

  • Levodopa is the best PD drug. I also take Pramipexole but I feel I get minimum symptom relief from it. I get a lot of gait freezing which started as a dragged foot. Now I would find getting about very very difficult without the Levodopa.

    The main thing with the Pramipexole is that it almost eliminates RLS. Without this medicinal benefit I think sleep would be impossible and life would be intolerable.

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