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    • #17756
      Cemal
      Participant

      I am 44 years old. I have been fighting parkinson for 1 year.

      I started with azilect for 1.5 months 6 months ago. I have not seen any benefit.

      But when I left azilect, my complaints increased and started tremors and shaking on my right feet when I had no tremors.

      And now, Bradykinesia in my right arm that impressed me the most. I am young, I have difficulty in doing my job and profession.  I don’t want to start levadopa/carbidopa  for resistance in the future. I avoid and afraid these treatments.

      Now my Neurologist recommended amantadine for my symptoms and I’m afraid it would make me worse. Anybody can tell me experience about amantadine using in PD .

    • #17760
      Ally
      Keymaster

      Thanks for sharing your experience, Cemal. I don’t have personal experience with this treatment but hopefully others in this forum can chime in with info that could help you.

    • #17762
      Frances Lo
      Participant

      Hi, I took Amantadine, a low dose, when I was taking Azilect but before I was taking Sinemet (c/l).  It improved my fine motor skills.  When we increased my dose, I started having hallucinations – little cartoon characters that I only saw in dim light, and not at all frightening, but hallucinations (which apparently one can get from just about any PD medication).  When I dropped the dose to the lower dose, the hallucinations went away.

      I no longer take Amantadine (was trying to reduce all the drugs I take), but I miss the assist it gave my fine motor skills.  For the low dose, I took liquid, once a day, in the morning.   I’m actually thinking of taking it again, since my fine motor symptoms are slowly getting worse.

      Hope this helps.

    • #17763
      Caroline Harris
      Participant

      Yes I was prescribed Amantidine. Unfortunately I had the side effect of splotchy- skin- arms and legs.  Looked a little like rash and left white spots that I thought would never go away. It did but took half a year or so. It didn’t hurt or itch and not sure it did augment my Levadopa treatment or not but my neurologist took me off. I’m using Comtan now

      hopefully you don’t have side effects

    • #17764
      Chris Manning
      Participant

      I started with levadopa but it didn’t seem to help me. When I switched neurologists, the new one put me onto amantadine 100 mg three times a day and it really helped. Last time, the neurologist suggested adding two levadopa/carbidopa 100/25 mg three times a day. Taking this many levadopa made me unbelievably nauseous so, after consulting my pharmacist, I have cut the levadopa back to one tablet three times a day, in addition to the amantadine. I find that I really feel much better so I am happy with this part of the result. What I am not so crazy about are my legs, which are covered with red spiders webs, a side effect of the amantadine, so I am too embarrassed to wear shorts again. The mottling was also initially accompanied by swollen ankles so for a time I had to wear compression socks but this has now worn off.

    • #17766
      MaryAnn Cavanaugh
      Participant

      I   had taken Amantadine on its own. It helped with slowness and stiffness but did nothing for my tremor. I eventually stopped taking Amantadine when I started experiencing swelling in my legs.

    • #17770
      Cemal
      Participant

      did you going worst when leave amantadine treatment ? i affraid from this worsenining if will happen.

      Anybody can say something ?

    • #17773
      Mike
      Participant

      Hi Cemal,

      Here in the UK we rarely use Amantadine as a single therapy for Parkinson’s. It is more often used to reduce the impact of longer term levodopa side effects, especially dyskinesias. In terms of symptom control, it can be useful, but would lack the efficacy of levodopa, or dopamine agonist therapy.

      Can I ask why you have not been given dopamine agonist therapy, e.g. Ropinirole, Pramipexole or Rotigotine? Is there a cost factor involved? (Cost issues are not such a problem in the UK).

      We would usually use dopamine agonists in younger onset Parkinson’s, with levodopa added later at low doses if a little extra was needed.

      BW

      Mike

    • #17774
      Charne Sherman
      Participant

      Cemal,

      I was given Amantadine and later Gocoveri (extended release amantadine) because I experienced dyskinesia which is a side effect of too much carbidopa/levodopa.  It works very well but I had to wean off it because of side effects which were hallucinations, swollen feet, varicose veins, drooling at night and brain fog and memory.  Once I weaned off it, I recovered from most of the side effects.  Here, we usually start off with an agonist as mentioned before and then go to the carbidopa/levodopa.  I wish I had never taken amantadine.

    • #17775
      Cemal
      Participant

      Hi Mike,

      This is not about cost or price problems. I afraid that Dopamine agonists will be resistance and not work a long time if  I start dopamine agonists. 1-1.5 year later, I will need carbidopa/levadopa support.

      if I start agonists, and also carbidopa/levodopa will work 2-3 years, And after ? what will I do ? I don’t want finish all treatment in 3-4 years later. I want to find another way for  late start dopamines. I can not retire on 47-48 or 50 y.o. Because I have 2 little child and must be power . 😰

      But  I know, I need something because my symptoms blockes me ! my right hand not working properly. ı do not have tremor on my arm and right hand, I have Bradykinesia on my right hand and arm .😔

    • #17776
      Cemal
      Participant

      Hi Charne

      did you recover your starting  point to before starting amantadine ? or did you worst than starting point ?

    • #17780
      Frances Lo
      Participant

      My mom, who also had PD, was on c/l for more than a decade before she had dyskinesias, and still had good symptom reduction.  Apparently they didn’t have amantadine then because she never took it.

      I don’t think you should assume that you’ll have a few good years and your meds stop working.  First of all, they don’t stop working, and second of all, nobody knows what their personal timeline is.

      Might be worth getting a second opinion just to have somebody else evaluate you for meds and discuss WHY that’s their recommendation.

    • #17784
      James Harvey
      Participant

      My experience (male, 73) may not be relevant to your situation but when I went to a full dose (100 mg tablet, 2x per day) I had severe urinary retention, especially at night.  I was able to tolerate 1x per day OK.

      A general suggestion — I find it useful to keep a written log of my adverse effects to meds because after a few years I may forget what the problem was (or that I even took the drug!).

    • #17785
      Charne Sherman
      Participant

      Hi Cemal,

      I almost returned to where I was before I started amantadine.  You must come off it slowly but you can return pretty much to where you were before you took it.  Don’t forget that I have PD for 10 years and what I have now is pretty much the progression of PD.  It is very common here in US to give carbidopa/levodopa (c/l) to early onset patients.  In addition, everyone reacts differently to each drug and experiences PD symptoms differently  I think a 2nd opinion will make you feel better about taking c/l.  Amantidine is not given when you are first diagnosed.  I was given pramipexole and took that for several years and then I was given c/l.

    • #17786

      This is encouraging information regarding your mom’s decade of use without severe side effects.  My husband was diagnosed close to a year ago (he had left hand tremors for a few months prior) and, at this stage, since there has been no real progression to speak of, he is still without any medication.  His next f/up appt. with his Neurologist is in June.  We are under the assumption that it is best to delay medications for as long as possible as to allow for longer use of them when they are required.  He has also joined a local Rock Steady Boxing group which he finds extremely beneficial – primarily for the exercise component but also for the companionship of others who have Parksinon’s.

    • #17788
      Russ Hudson
      Participant

      I recommend you try Butyric acid supplements. They have reversed my Parkinson’s to the point where I’m essentially cured. I take six pills twice a day, and on niacin supplement.

    • #17791
      Russell Dean Boyer
      Participant

      The first time I took amantadine was very encouraging. About two hours after the first dose my tremors subsided remarkably.

      However, that is not the full story. At the time I was taking an ACE inhibitor for blood pressure. ACE inhibitors are well known for producing a dry cough and I had one which gradually got worse. I would be OK on awakening and get hoarse as the day wore on, and my cough kept getting worse. I realized I had gastric reflux causing the hoarseness and coughing.

      A pulmonologist did a barium swallow test where they  do an X-ray video of you while swallowing. Afterwards she said, “This is bad. This is very bad. In 1 to 5 years you will no longer be able to eat. But don’t worry, we can put a hole in your stomach and pour in nutrition that way.

      This was obviously a worry but about 3 weeks later I realized that I woke up without the gastric reflux and about 2 hours later I grew hoarse. And that was two hours after my amantadine dose.

      I stopped amantadine for 3 days and the hoarseness and cough disappeared. I restarted the amantadine and it came back. I stopped amantadine and it disappeared.

      That was 6 years ago and I haven’t had swallowing problems since.

      I don’t blame the doctors because this seems a rare side effect. If you look in the Physician’s Desk Reference you find it is not listed as a side effect which showed up in the testing process. However, after marketing it seems a number of other side effects are listed, including “dysphagia” or difficulty in swallowing. Just that one word!

      My point is not to run down amantadine but rather that there are a lot of side effects possible with many drugs and we just have to be observant. I was lucky that the 2 hour connection between the  amantadine dose and my coughing hit me.

      We can’t put it all on the doctor. I am sure amantadine is fine for many people, just not for me.

       

    • #17797
      Mary Beth Skylis
      Moderator

      Mary/ John Klein,

      During my Dad’s last neurology appointment, his doctor helped me understand the long-term use of sinemet. She said that we don’t build a tolerance to it. But the progression of PD worsens, which requires higher dosages. Increasing medications (or sometimes taking them at all) is a big concern of my Dad’s too. He’s in it for the long run. And I’m so proud of him for having that mentality. But I also hope that he finds a way to have the best quality of life possible.

    • #17801
      Mike
      Participant

      Hi Mike,

      This is not about cost or price problems. I afraid that Dopamine agonists will be resistance and not work a long time if  I start dopamine agonists. 1-1.5 year later, I will need carbidopa/levadopa support.

      Hi Cemal,

      I have patients who have been on DA therapy much longer than 1-2 years without needing the addition of LD/CD, so it is far from certain, that it will be a short term solution.

      if I start agonists, and also carbidopa/levodopa will work 2-3 years, And after ? what will I do ? I don’t want finish all treatment in 3-4 years later. I want to find another way for  late start dopamines. I can not retire on 47-48 or 50 y.o. Because I have 2 little child and must be power . 😰

      The reality is, everyone is different, so there are no fixed time frames for how long a medication will be effective for. I have patients that have been diagnosed 20-30 years, who still live at home and manage their daily lives with help from family, etc.

      There are also other medications like Entacapone/Opicapone/Tolcapone/Safinamide, which can be added at a later date.

      But  I know, I need something because my symptoms blockes me ! my right hand not working properly. ı do not have tremor on my arm and right hand, I have Bradykinesia on my right hand and arm .😔

      Liaise with your Neurologist or Nurse and try to find out which is the best option for you. Wishing you the best of luck, Mike 

       

    • #17816
      Chris Manning
      Participant

      What all this says to me is exactly what everyone already knows – how different we all are. What works for me may not work for you; neurologists in Canada may not prescribe the same regime for me as they do for you in the US or England or anywhere else for that matter.

    • #17835
      Gail Dons
      Participant

      Hi Cemal!

      I have never been on Amantadine, but, like you, I started my PD journey with Azilect. I didn’t see a whole lot of difference except I would occasionally notice my R arm was swinging all by itself when I walked, and I stumbled less. After about 9 mos, my neurologist advised I add Levo/Carbidopa. Also like you, I was very resistant,to this, wanting to save my L/C exposure until I got further along. I was afraid that once I started, it was a slippery slope to maxing out on dosage, increasing side effects, then not having it work when I really needed it. My neurologist insisted. I accepted his Rx, but I only took it when I really was bothered by symptoms. I have to admit, it really helped, but I still wanted to power through on my own and “save” the L/C for more  severe symptoms.

      Then I moved to a city with several major MD programs, and started care with a MDS. Bless that woman! She took almost 30 min talking to me, approaching my concerns from several different directions until I finally understood that the increase in need for L/C isn’t so much that your body gets used to it, but that as time goes on, the dopamine producing cells are dying off and you have fewer and fewer of the good guys to produce the dopamine you need. THEN she had to convince me that it was better to take my medication on a scheduled basis rather than whenever my symptoms were eating my lunch. She was SO patient. I am a physician (probably why I was so hard to convince!) She spoke at my level – high in some areas and abysmal in others! She gave me research articles to read. She didn’t ush, but it was bicuspid she cared.cFinally, I got the point. 6 years later, I am still on the Azilect, but I still only need 1 L/C every 5 hrs (3 doses a day). For me, this has worked so well that no one knows about my PD unless I tell them – and I am still performing surgery – very well, thanks!

      Everyone is not the same, and what works for one person may not have the same effect on another person.   But don’t be afraid to try the L/C if that is what your doctor recommends. If you wait until all of those neurons are dead, you will need high doses of L/C anyway to produce all of the dopamine that your body,just can’t.

      Good Luck!

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