This topic contains 20 replies, has 9 voices, and was last updated by  Jean Mellano 1 week, 5 days ago.

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  • #14446
     Ally 
    Keymaster

    How many medications have you tried for treating your PD symptoms? Did any of them work really well for awhile, but then seemed to lose their efficacy? What about side effects? Did you ever discontinue a medication because its side effects were too difficult to bear?

  • #14447
     Jean Mellano 
    Keymaster

    I have tried Azilect (did nothing for my symptoms), Ropinerole (got deathly sick and nauseous within 20 minutes of taking it) Neupro patch (various dosages) and Sinemet.  I am currently on Sinemet 25×100 2 pills, 2x/day and one 3mg Neupro patch.  I feel marginal, but if i try to cut back sinemet or neupro, i feel much worse 🙁

    • #14760
       William Childress 
      Participant

      I’ve was first prescribed meds starting for RLS 2005 then PD 2010:

      Sinemet (low to high doses), Azilect, Mirapex, Entacapone, Amantadine, and now Rytary.

      • #14775
         Jean Mellano 
        Keymaster

        William, do you think you are stabilized now on your meds?

  • #14459
     Lou Hevly 
    Participant

    I first tried Sinemet 25/100 3 x day because I was hoping it would let me play the guitar again, and it sort of worked but not well enough. So I quit taking it, but then my care-giver/wife said she could really tell the difference in my posture and general expression when I quit taking it, so I went back on it and have been on it now for 3-4 years. No side effects yet. Then a year or so ago I developed Restless Legs Syndrome, which the Azilect didn’t help enough with, so now I’m taking Mirapex 0,26mg once a day and it keeps the RLS at bay. Years ago I took Requip briefly, but it gave me edema, so I quit it. I’m also now taking Azilect 1mg once a day in the evening because I think it may help with my insomnia (but it probably doesn’t).

  • #14463
     Jean Mellano 
    Keymaster

    So much trial and error (I think more error in my case) with PD drugs.  I have been on sinemet for about 2-3 years  now and other than occasional nausea if I dont plan my pills around a meal, I am somewhat stable.

  • #14560
     Marcus Sutherland 
    Participant

    Mirapex, amantadine, neither worked very well. Once I tried sinemet it worked great 3 years later it’s all I take 4 times a day.

  • #14563
     Jean Mellano 
    Keymaster

    thank you marcus for your response.  i have heard that due to progression of PD, we must eventually change or increase our meds.  are you doing okay on 4x/day for sinemt?

  • #14565
     Marcus Sutherland 
    Participant

    Originally I took 3 tablets every 5 hours now I’m at 4 25/100 1 tablet every 4 hours. Seems to be working fine so far.

    • #14568
       Jean Mellano 
      Keymaster

      marcus, is that (4) 25/100 pills every  4 hours or (1) 25/100 tablet every 4 hours.?

  • #14569
     Marcus Sutherland 
    Participant

    1 25/100 every 4 hours.

  • #14812
     Siobhan P Calder 
    Participant

    The first drug prescribed was  Neupro Patches (Rotigotine)  I was diagnosed in October 2013 but until I saw that these patches made my symptoms completely vanish, then I knew I had it.  But this patch at a cost of $250 after insurance was worth it because I didn’t have any symptoms.  Well, as soon as the weather warmed up in the Spring the darn patches would fall off  1 hour after I would put them on and I was right back to where I started from.  I tend to run hot so I knew this wasn’t going to work.  Then I was taking Pramipexole 1.25 mg 3 times daily and that worked great for 6 years Then in 2018 I started having a Compulsivity side effect.  I started uncontrollable binge eating.  I have never been overweight or had food issues.   I gained 40 lbs in 6 months and went from a size 8 to a 14.  I regret not telling the doctor sooner while the other Parkinson symptoms where still at bay, I was getting depressed over weight gain.  I have been on Ropinirole for 1 month and the bing eating compulsion has gone away and my Parkinson symptoms, for the most part, are in check.  Still a little depressed and I feel nauseous a lot but I’d rather that and my weight is going down.  When my Neurologist changed to this medication, she said after this I would have to go to the actual Dopamine meds.  Not sure why.  I have only been on 3

     

     

    • #14814
       Jean Mellano 
      Keymaster

      hi Siobhan

      You sound like you have been through the mill with PD meds.

      i too am on neupro patch.  i found if i did not put my hand on patch for 30 seconds after i applied it to skin, it would fall off.  also, there are organizations that help patients with their copays on expensive meds. i have used both of these and it has worked out very well:

      https://tafcares.org/

      https://panfoundation.org/index.php/en/patients/assistance-programs

      I know most of my neurologists liked to try non carbidopa/levadopa therapy like ropinerole, neupro, azilect ( i have been on all of these) as they feel  sinemet and its generics may lose efficacy over time and cause dyskinesia as a side effect.

  • #15089
     Andrew Levitan 
    Participant

    Relatively new onset, in my 60’s. I tried rasagiline, then switched to selegiline 2x per day. Then added in carbidopa/levodpa 25/100 gradually. Now on Selegiline 2x per day (8 am and at noon), take 1/2 carbidopa/levodopa 8am, 1 at noon, 1 at 4 pm, 1 at 8 pm, 1/2 at bedtime (around 1130), and 1/2 if I wake up in middle of night (which is almost always). So 4 1/2 carbidopa/levodopa pills total over 24 hours. Every time I try to cut back (usually by taking a half instead of a whole) my symptoms get much worse (mainly rigidity.) Also using CBD 5 mg under tongue 2-3x per day. Living life fairly normally. exercise a lot. Am worried though about how long this will remain effective and if/when will get dyskinesias

    • #15091
       Jean Mellano 
      Keymaster

      Wow Andrew, that is a lot to remember!  How do you stay on track?

      • #15096
         Andrew Levitan 
        Participant

        Written out plan. I phone alarms, daily and nightly pill box.

  • #15099
     Jean Mellano 
    Keymaster

    yikes!  sometimes i feel like my life is ruled by when i take meds

  • #15309
     Robert 
    Participant

    Prescribed by my PD Doctor:

    1  Carbidopa/Levodopa,  Started on 1 1/2 pills (450mg) spread throughout the day.

    Now taking 1600mg spread through the day and night.

    2 & 3.  Two different pills for PD related bladder problems.

    4  Flornef to deal with low blood pressure from all those levodopa and bladder pills.

    5  Flobic, a B vitamins complex pill to deal with frequent PD caused B vitamin deficiencies.

    6  Entacapone as needed.

    Plus three other pills for other non-PD stuff!

    After just a short while on my current regime, I feel better than I have in months.

    It is clear to me that my Dr. believes Parkinsonism is a dopamine deficiency disorder that is best treated first by replacing the missing dopamine.   And everyone’s effective dosage is unique and it takes a while to find the effective dosage.  I have read that not all neurologists have that same treatment philosophy.  I think some PD Dr’s believe that not just the dopamine deficit need be treated but the body’s ability to use dopamine needs treatment too and there are pills that work from that side of the process.  My 1st second opinion was with a Dr. who would not have started with C/L.  He said I just needed something to help use what dopamine I still had.  I decided to be treated by my 2nd second opinion Dr.   My original PD Dr. would not have prescribed anything at the time she saw me.  But in fairness to her my PD symptoms went quickly downhill in just the few months after seeing her and before getting the 2nd and 3rd opinions.

    Lots and lots of pills.  But they really are magic pills for me.

     

    • #15319
       Ally 
      Keymaster

      Thank you for taking the time to share all that, Robert. Your story is a very hopeful one and I’m glad the pills are working their “magic”!  Do you find it overwhelming to be on so many medications?

  • #15448
     Mike P 
    Participant

    I’ve been on 1mg daily of rasagiline (Azilect) for about two years. I don’t notice any improvements with Azilect. There was a study that theorized this drug may be neuroprotective. It wasn’t proven to be neuroprotective at a higher dose so these claims are not fully supported. But, it could be neuroprotective, it’s easy for me to take once daily, and I have no side effects.

    Amantadine was a failure with night sweats and terrible nightmares.

    Two dopamine agonists were busts for me: Pramipexole (Mirapex) and ropinirole (Requip). I experienced visual disturbances (doctor speak for hallucinations) where I’d see bright flashing lights at night.

    Artane didn’t work for me either. I’m in the process of tapering down the artane (currently 4mg daily titrating down 1mg per week) because I experienced various side effects at 7-8mg: extreme dry mouth, dry eyes, and either euphoria or panic 60-90 minutes after a dose.

    I didn’t notice any symptom improvement on any of those drugs but I could never get to therapeutic doses with the side effects I experienced.

    My doctor wants me to try one more dopamine agonist before last resort C/L: Neupro (rotigotine). I have the script filled but am being careful as to when I start the med given my previous dopamine agonist side effects. When trying new meds I wait until I know I won’t need to drive for a few days just in case.

  • #15464
     Jean Mellano 
    Keymaster

    hi hear you Mike, thanks for sharing. i too had bad side effects from most meds and those where i didnt have side effects did nothing for me 🙁

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