Jump to content
helplinedonate

beemacs

Members
  • Content count

    7
  • Joined

  • Last visited

Community Reputation

0 Neutral

About beemacs

  • Rank
    Newbie
  • Birthday 01/01/1970
  1. beemacs

    Need to switch meds?

    Dear Mark, I have written to you before about Rytary which I have given up on. I was dxed in 2004, age 52. I was started on Sinemet I think very soon after. I checked & as far back as I can find (2009) I have been taking Ropinirole ER 4mg, Amantidine 100 mg, Azilect 1 mg once daily plus 10 mg c/l 6 x daily. I am having little on times & a lot of freezing & off times. I asked my neuro about changing meds & he said I'm on the best ones but I was wondering if my body is immune to them & a change might help. Any thoughts would be greatly appreciated. Thank you, Brenda
  2. beemacs

    Baclofin

    My nurse at Cleveland Clinic put me on it a couple years ago after I told her I thought I had a brain tumor bc my head hurt so bad. She checked me & said it was from my tight neck muscles.
  3. beemacs

    Sinemet CR vs. Rytary?

    Mark & mitras, I'm still waiting for someone to tell me if CR works because I have never been on it & when I asked my neuro about it she said "It sucks!" I've been trying Rytary since March & I think it sucks~~WAY TOO MUCH dyskinesia. It was on the formulary when I 1st got it from CVS/Caremark but they took it off & I had to pay $45.00.
  4. beemacs

    Cost of Rytary

    We have CVS-Caremark & Rytary was free 1st time but they removed it from the formulary & it was $45 the last refill I got.
  5. beemacs

    Rytary

    I thought Rytary was going to great but I've been trying since mid-March to get the right dosage & still no luck. My neuro said sinemet CR isn't good. I'm starting to believe Rytary isn't either. I get dyskinesia so bad & it lasts for hours~~it drives me & everyone around me crazy!!! Then, if I lower the dose I can't move! Any suggestions or advice would be greatly appreciated!
  6. beemacs

    Rytary

    Hi Mark, I got on the NPF website to look up Rytary. I found your forum and I think you might be what I need. I was dxed July, 2004 one month before I turned 52. I have tried many neuros with not very much success or satisfaction. I have been on Stalevo & Comtan years ago but quit because of gastric problems if I remember correcly. Now I take 1 Azilect 1mg once a day, 1 ropinirole ER 12mg once a day, Amantadine 100mg 3 times a day & I have been breaking carb/levo 25/100 tabs in half because of dyskinesia which drives my family & me crazy!. I've never had anyone tell me how to take my meds as you did so explicitly to Karen. The last time I saw my neuro she said a lot of pwp take Requip in the afternoon which I am doing now but I haven't noticed a difference. I don't think I've ever been on Sinemet CR. I think that may be helpful to me. I am having a LOT of freezing & off times. By the way, it seems the only thing the neuros think is DBS! I don't think I am that bad, I just think I need a meds adjustment. What do you think? Thank you, Brenda
  7. hi

    i just saw you are on here--do you ever chat here?

  8. beemacs

    foot cramps

    I've been having foot cramps a lot lately. I just had blood work done & I was OK with potassium & a little high with magnesium (I've been taking magnesium supplements neurologist suggested). I take an extra 1/2 sinemet when they start but then I usually get dyskenesia. Any suggestions?
×