Not sure what's next

I've been diagnosed with pd since jan 6, 2014. I'm 50 years old and am taking levodopa/carbidop 100/25 mg. I'm taking 6 tablets a day. I'm still limping, still stiff and my neurologist says after the new year I need to see his associate. Is stronger meds, is it something else other then pd?

I follow this forum and enjoy the postings

Any thoughts??

27 Replies

  • My thoughts. Why did you start meds? Was it simply because your neurologist prescribed? Did you start meds as soon as you received the diagnosis?

  • One of the things which stuck in my mind when dx and googling info. was the fact that over medication with levodopa/carbidopa (or I suppose other PD meds) could produce similar effects to under dosing. I was particularly concerned as an older person, now 75, as over medication in the elderly is an ever present risk due to the increase of aches and pains in general I believe most people get benefit for their PD symptoms from 3 x 100/25 levodopa/carbidopa which is recognised as the lowest efficacious dose . Are you with a neuro who specialises in movement disorders - that's best if you can. 4 years after diagnosis I was still not up to 6 x 100/25 a day but I do take Azilect (a pill you can take by itself - expensive for non UK people I believe)- that makes the most of what dopamine you have in your body. The lowest meds, consistent with maintaining function is the aim.

    The other thought is have you done any rehab/exercises so your body can re-learn normal movement. Exercise is still underplayed in general although it is increasingly recognised as having a major part to play in combatting the symptoms of PD

  • Casper,

    If taking Levodopa in whatever form does not give you any result then that might be interpreted as a sign that you do not have "normal" PD. When I was first given Levodopa I could discern no difference between taking and not taking a dose. but then I did start on 62.5mg rather than 125mg. When the dose was doubled the difference was very noticeable.

    It might be that although you were diagnosed only about a year ago your PD might already have been quite advanced. Then perhaps if you did not seek a diagnosis very soon after strange things started and that therefore you have had PD for longer than you realise - perhaps.

    I also take Pramipexole (a Dopamine agonist). I think this may have helped to get rid of bradykinesia and stiffness in the torso. However I don't recommend taking Pramiexole a) because many people find it has unpleasant side effects and b) because the withdrawal symptoms are really really unpleasant.

  • Hi Pete, when I was diagnosed in January the neurologist put me on pramipexole, I found it to not work either. Decided. To get off them after consulting with the doctor and I agree about the hard time doing so. I really didn't care for that neurologist so after a month of not being on anything I went to this new neurologist. A doctor that had 25 years experience and he's great, tells me like it is. That's when I went on the lavadopa. Started with 3 pills a day now up to six a day. Still not helping.

    My limp is so bad that I'm so tired after work. It's hard to walk around all day.

    Dave. aka. Casper

  • Casper,

    If levodopa makes absolutely no difference to your symptoms then it might be necessary to consider alternatives. It may be a good idea to get a DATSCAN. This can confirm a case of PD but not confirm or even hint at alternatives.

    If you have a different form of PD then it it is still difficult to diagnose which particular form of Parkinsonism you have.There are a number of alternatives that all share the same or similar symptoms as PD. This of course does mean that an accurate diagnosis can take a while for the doctors to arrive at.

  • my husband was put on carbidopa/levodopa when he was first diagnosed in 2007 and it didn't work for him.

    Two years ago he started to decline and 'need it' (we were told) so he's been on it a year and he's regained a lot of ground. People say to me, "what did you do with this guy?"

  • Hi Casper. I believe emphatically that Pd is not as bad as the doctors make out. I don't want to raise your hopes unduly but In my case, I have been able to overcome most of the movement symptoms, but many others have tried what I do, but not all of them have had much success.

    I don't want to bore everybody with my story but if you want to read all about it then go to my website

    I am not selling anything other than my book, which you are under no obligation to purchase. You can get, free of charge, all the relevant information on the website, but it is impossible to put it all in a logical sequence other than in a story. So take your choice!

    I have not needed to take any Pd medication for the last 12 years and only took Pd medication for ten years. I was diagnosed in 1992, but my symptoms started in 1963.

    Good luck


  • did you suffer from dyskenisia my boyfriend has it bad sometimes because he has been on his meds for 8 years. It is sad to see him jerking all over the place. do you have any suggestions for that?

  • Hi DebiChris. No! I have never suffered from dyskinesia. Therefore I should not be giving you advice. This is not advice, it is information.

    Dyskinesia is caused by too much levodopa in the blood. So you have a choice: either you take more levodopa medication and have dyskinesia or you take less levodopa medication and have more Pd symptoms.

    I now pose a question which only the patient can answer: What symptoms did the levodopa medication manage to overcome? If the answer to that is NONE then why take the levodopa medication?

    Levodopa medication does NOTHING TO AFFECT THE PROGRESSION OF PD. In that case, not taking it does nothing to make your Pd worse. Many patients take levodopa medication because the doctor said they HAVE TO! Why would the doctor tell the patient to continue taking levodopa medication if it does nothing to relieve the symptoms of PD?

    There is only one known way to reverse any of the symptoms of Pd and that is fast walking. If you would like to know more about that then tell me.


  • John, thanks for sharing your perspective. My exercise of cvoice is swimming laps. I believe any exercise can be beneficial to Pd patients. Also, with this disease, stress and fatigue are real enemies. Reducing both can help slow things down as well.

  • Hi Vivace. Have you heard about GDNF? It is produced by the brain when we do certain types of energetic exercise. It repairs the damaged brain cells and therefore produces more dopamine in the brain and literally reverses the progression of Pd.

    In the studies done by Dr Beth Fisher on GDNF it was found that swimming does not produce any GDNF and as such has no benefit in that direction. It is however a very good exercise and is very good for the muscles.

    We all have to decide how to deal with our Pd and you must toss up between exercise with which you are comfortable or fast walking, with which you may not be so comfortable.

    Kind regards


  • I think if he does not take it he freezes and becomes more stiff

    He does not talk about it much. He is an auto mechanic and just keeps on going and going. It is getting more difficult for him though. He needs his job

  • Hi DebiChris. Freezing is quite easy to overcome, by taking over the control of his movement by using his conscious brain. This may not be easy to understand but our conscious brain has no difficulty in connecting to our limbs, while our subconscious brain does.

    When he freezes, I assume you mean when walking, he must 1st try to relax, because the freezing causes high levels of tension. Then if he places his weight on his 'good' leg and then lifts his 'bad' leg off the ground and consciously puts it forward in front of him and places the heel of that foot FIRMLY ON THE GROUND, he will have consciously moved his leg forwards and will have started to consciously walk.

    I did this yesterday with a Pd patient at a support group meeting and he first of all placed his foot FLAT on the ground, not realizing that he was still walking subconsciously. When I told him to 'CONCENTRATE' on striking the ground HARD with his foot then he was able to consciously place that foot on the HEEL and he continued to do that until he lost his concentration and started to shuffle again.


    Kind regards


  • Have pd over 8 years now 81

    B 12 5000 mg two times a day under the tingle helps with my balance and nervousness

    Lots of side effects everyone knows

    About them two slumps twice a day 11am. 3pm like clockwork

  • Casper, We are in a similar boat. I was diagnosed Oct 2013 and started out on 100/25 3 times a day. After 6months I was increased to 200/50 3times a day. I would have told you that the meds did nothing good or bad until I missed a dose. Then symptoms got worse. Crazy thing went through my mind like could meds be causing symptoms. But I had symptoms before I started meds. I know its a tough place to be. Try to keep in the best shape both mentally and physically. remember you are not alone. I was diagnosed at 53

  • Being newly diagnosed, there are many questions you probably have concerning the Symptoms. I created a list of over 100 SYMPTOMS. Send me an e-mail to: and I will send you the list in Excel format. This is an open offer to anyone reading this post. Simply say 'Symptoms' in the subject area.


  • Symptoms

  • Zuke, if you want the 'Symptoms' list, you need to send me an e-mail at: HealthUnlocked does not show your e-mail


  • Hi Casper3564

    I cannot answer your question only being a lay PwP but I can suggest you consider taking Azilect 1MG or Amanatadine 100MG to complement your Sinemet. These worked wel with me but as we both know wh at works for one doesn't always work for another.

    The other thing I would commend is Exercise - the more intense the better. I started. Boxing training. At e start of this year - despite being 70 and have been diagnosed for nearly 12 years. If I had known about it 12 years ago I would have sTarted it then

    Good luck and best wishes for a successful regime

  • Casper, I do believe also that exercise is a key to beating this condition. But also, I am taking Mucuna (an herb that is actually Fava - or velvet - bean). I started taking it because it was 5 months before I could get an appointment with a neurologist after my husband diagnosed me. Yes, he recognized the symptoms and read about it....

    Anyway - the Mucuna helped and when I finally saw a neuro they recommended the usual Sinemet - 100/25 - three times a day. Well, I have problems with side effects of many drugs, so I decided I would try just half of that - along with my Mucuna - and it worked! Now, I just take two 1/2 doses a day of the sinemet along with the Mucuna and I do swim twice a week and have a stationary bicycle for exercise also.

    I have been diagnosed since 4/2013 - but noticed symptoms since 1/2012 - and maybe even earlier.

    Good luck

  • Allyn, where do you get your mucuna? And how much equals one 25/100 sinemet? Thanks.

  • Marion, I happen to get the Mucuna I use (Himalaya brand) from Vitacost. I take 4 a day - 2 in the am and 2 in the early afternoon - along with 1/2 sinemet with each dose. I don't know how the Mucuna translates into sinemet dosage.

    The bottle says it has 250mg of seed extract (6% L-dopa, 15mg) and 350 mg stem powder.

    I started by taking the recommended dose (1 per day) and kept increasing until it seemed I was getting results.

  • Thanks for your reply!

  • Wow! That seems to be a fairly rapid escalation of carbidopa meds! I just recently had DBS implant surgery, and one of the acceptance criteria was that carbidopa worked well for me At first, but it a@as becoming less and less effective. I was also taking Eldipryl ( selegiline) which acts as sort of a booster for the Carbidopa.

    This is such a strangeness, effecting each individual a bit differently. It takes a while to find just the right combination. Good communication with your doctor is essential!. It also helps to be with a Neurologist at a Movement Disorders Clinic. keeping a journal for a few days so you can document your symptoms for the doctor. Don't give up! Ever.

  • Ive a minefield of opinion on this.

    I don't think Allyn escalated the dosage rapidly.

    I think taking anything until a satisfactory response is achieved is the right thing to do. Imagine the reaction if a neuro gave you a prescription,instructing' take until you get a response'.

    Its criminal having to wait 5 months for an appointment when your in a debilitated state.So face it you havnt a cat in hells chance of having you hand held optimising your medication.

    Sadly many sufferers dont have the means or the confidence to do it alone. Many people are either undermedicated or overmedicated and afraid of the illness never mind treatments that can cause further issues with your health.

    Whats in a data sheet,does it protect the drug company and the prescriber. I don't think they are really designed with guiding the patient as the priority.I certainly dont think there a guide to therapy. more of a hazard warning.

    Health care is a partnership not a dictatorship and it doesn't matter wether you choose traditional or alternative medicine,what works for you cant be decided entirely by professional guidance.Contrary to opinion medication does not always have to increase over time. if you feel better take less, if you feel worse take case you are taking to much,that makes sense to me.Conditioning is you expect to get worse,your waiting to get worse and the solution your offered is more meds.There is only one known way to reverse PD,I don't think so, fast walking is my idea of hell but boxing might be fun,each to there own.

  • One posts above says "I believe emphatically PD is not as bad as doctors make out". I wondered if anyone agrees because it is the first time I have ever heard a person with PD claim that!

  • Just a quick note. I keep telling people about my father. He had PD for at least 37 years. He died at 99 and only in his last 3 years needed a wheelchair. He never agreed with the diagnosis and never parked in handicapped parking and refused a walker and just kept on moving. My mother was great. She never babied him or really did anything because of the disease. I keep writing this note because I think it is so important for people to realize that this disease is so different with different people and that so many factors figure in to the outcome. I have seen sad stories and good stories...people are all different. My father refused to even admit that he "had"PD. If I insisted he would just look at me and say "That's what you say." I guess he was right.

    He died a good death. Not until about 2 weeks before he died at 99 he went to bed...kept his eyes closed and after telling me he loved me...died. He never was in hospital and never in nursing home. Took the usual medication but wondered why?

    He was a strong stoic man who never accepted what others said. That was difficult for me but I now appreciate how he handled things.


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