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Pat Ruby

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About Pat Ruby

  • Rank
    Member
  • Birthday 03/14/1952

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  • Gender
    Female
  • Location
    Fort Pierce FL
  1. rasagline generic?

    Hi all, I thought I would mention that when my prescription arrived in the mail today, the Azilect was substituted by a generic Rasagiline mfg by Orchid Healthcare for Alvogen Inc. I guess it's available now! PatR
  2. What should be next after Azilect?

    Hi Mark, hope you are feeling well. I am on the below regimen, for a total of 3.5mg daily. I would like to try switching to Mirapex ER, as regular mirapex seems to be diminishing in efectiveness for me. I have on hand mirapex .375mg which my insurance refused to cover. If I were to switch, can you recommend the appropriate dose/timing comparable to my current dose? As always, thanks for your help. I appreciate this forum more than you can know. I have learned so much reading other posts,and it helps to see that others have similar issues. PatR620 Fort Pierce, FL Daily doses: 6AM Azilect .5 mg x 1 7AM WPThyroid 81.25mg x 1 8AM Mirapex .75mg x 1 10AM breakfast 12PM Mirapex 1mg x 1 2PM lunch. 4PM Mirapex 1mg x 1 5PM Azilect .5mg x 1 7PM dinner 9PM Mirapex .75mg x 1 12AM bed
  3. Trihexiphenidyl

    Thank you so much Mark for your help. I will forward the info to her. She is a casual friend and not very forthcoming with information. Her doctor is not a PD specialist but rather a general family doctor. I'm trying to get her to consider seeing my specialist but he is an hour away and she seems resistant to change. PatR
  4. Trihexiphenidyl

    Hi Mark, I am writing on behalf of a 65+ friend who is not computer literate. She is a PD patient for several years. She currently takes mirapex .25 mgs 3 times a day and Trihexiphenidyl: unsure of dose. My research indicates that Trihexiphenidyl is not recommended for older people due to potential side effects including confusion, memory issues , hallucinations , dry mouth, blurredvision, and urinary retention. Should be avoided in elderly people according to my book from the National Parkinson's Foundation. She has been on the above medication for 6 months now. Prior symptoms were tremors left leg and arm. She was taken off Sinamet due to extreme nausea and muscular cramping arms and legs. Can you please suggest an alternative medication that she can discuss with her doctor to get her off Trihexiphenidyl? I am doing well on my meds but hesitate to suggest them to her. Thank you for your patience and willingness to help us on this forum. PatR Florida
  5. It's just hello

    Thank you, shakti. So far no such issues. I am on .5mg Mirapex 3 times a day now. Still exhibiting symptoms, but feeling a little better. It's been two weeks now. I sometimes catch a nap during the day, have not experienced the instant sleep mode. Almost wish I could when I lay awake at night, trying to catch some zzzzz's. Started Yoga class this month on Dr's advice. Difficult to do when you are tired to start with. Hoping my muscles decide to return. I was always a very strong person, and this constant weariness and weakness is difficult to handle. I am walking a lot, a far cry from previously running 5Ks.
  6. What should be next after Azilect?

    Hi Mark, the one hour before, or two hours after *rule*- Would that apply to all medication? Do all drugs hit the liver? How about OTC? Do they loose efficacy of taken too close to a meal? Thanks for your input.
  7. Mon713, You might try calling the NPF hotline on the home page of this website and ask them to locate the nearest recommended MDS. Six months is a ridiculous wait, in my opinion. I got their recommendation, an hour drive away, got an appointment within two weeks, and I am very pleased with this Dr., having been two years and several Drs. to get diagnosed. Best wishes.
  8. It's just hello

    Musicman, you are correct about in the long term, same number have motor fluctuations. However, Dr. said if I had such severe side effects after four months on C/L, I'd be a basket case in five years. He is trying to delay that. Adding Mirapex was mentioned from day 1 of Azilect. He is starting with low doses and building up slowly to reduce side effects. In the long term, I'm sure I will have motor fluctuations regardless which Rx I am on. But if I can delay some of them, why not try? If it doesn't work, he can/will add C/L back in.
  9. It's just hello

    Hi grunt85, musicman,TexasTom. Thank you for your kind words. Actually, my Dr. comes highly recommended by the NPF hotline. He has done trials on reducing side effects of levodopa. My side effects went away as soon as I changed Rx. Without trying, I won't know if this may work for me. Drugs affect different people differently. Synthroid didn't work for my thyroid, yet it is the drug of choice. The foot tapping was not my normal tremors, but was like a syncopated rythym, alternating feet, like I was keeping time to some wild drums. It is gone now. Dr. might very well add C/L to the mix, in low dose. He is reevaluating every month.
  10. It's just hello

    Hi all. In May 2012, I was diagnosed hypothyroid and put on Synthroid. Prior to that time, I had enjoyed a very healthy active lifestyle. I am female, retired, age 63, 115 lbs. In 2012, I was 133 lbs. During 2012, I started tremors, and leg cramps. My research led me to think that I had Synthroid side effects. (Eventually was put on WP Thryoid with leg cramps disappearing.) During 2013 I had an episode (two weeks in bed) of Barr Epstein virus which left me very debilitated and weak. I could hardly walk. During this year, tremors increased and other PD symptoms surfaced:, dragging leg, leaning forward, pill rolling, frozen face, memory lapses... I also lost 33 pounds without any loss of appetite or dieting. First neurologist I visited put me through standard extensive bloodwork, and MRIs. Tried to be me on antidepressants (NOT!), told me I had Essential Tremors in 2014. Second neurologist immediately dianosed PD (Nov 2014), and put me on Carbidopa/Levodopa 10/100 twice a day. Symptoms abated considerably, and in the 5 months I was on it, I developed a rhythmic tapping in my feet (dyskinesia?). I have managed to gain back 15 pounds, feeling much less bony. I started researching again and found the NPF website, who located a PD specialist about an hour away. (March, 2015.) This neurologist is awesome, well recommended, listens and informs. He was disappointed that I was on C/L so early in the disease progression and wanted to try Azilect. I agreed to try, knowing I will be miserable for awhile until we get the meds right, but the tapping was cramping my feet badly. Tapered off C/L over two weeks, and am on Azilect (first .5 once a day, now .5 twice a day) since April 29, 2015, with increasing symptoms, almost non-stop tremors. Dr. then added Miraplex starting with .25mg three times a day, increasing to .5mg three times daily. Feeling a little better this week , not as good as on C/L. Dr. says I am 2 on a scale of 5, 5 being the worst. Taking pills is a strange concept for me, who rarely took aspirin. I am getting good info from these forums. Thank-you for all the input. Trying not to get depressed over PD. PatR620
  11. What should be next after Azilect?

    Hi Mark, saw Dr. yesterday. In addition to Azilect .5mg x2, I am now prescribed Mirapex x3. Starting first week at. 25mg, increasing to .5mg second week. My daily pill regimen will look something like this. Please feel free to provide input if you see a better way. 6AM Azilect 7AM WPThyroid 9AM Mirapex 10AM breakfast 1PM lunch 3PM Mirapex 4PM Azilect 6PM dinner 9PM Mirapex 12AM bed I read what you wrote about our body telling us when to take a pill, but I am not stable enough, nor experienced enough to be able to do so. 40 years healthy law enforcement career did not prepare me for PD. Thanks for your input.
  12. Sinemet and No Protein? Please simplify

    Mark, LOVE the Ferris Wheel analogy. I am learning a lot from you. Thanks, from a newbie PD.
  13. What should be next after Azilect?

    Hi Mark, I called my Dr. and told him I was pretty miserable with all PD symptoms returned. In addition to Azilect .5mg twice a day, I am now on Mirapex ER .375mg. Only 3 days now and no change. My Dr. appt is next week. Hope I don't have to be miserable too long before something kicks in.
  14. Greeetings Mark. I have read with interest, much of this forum. This is my first post, will try to be brief yet complete, In May 2012, I was diagnosed hypothyroid and put on Synthroid. Prior to that time, I had enjoyed a very healthy active lifestyle. I am female, retired, age 63, 115 lbs. In 2012, I was 133 lbs. During 2012, I started tremors, and leg cramps. My research led me to think that I had Synthroid side effects. (Eventually was put on WP Thryoid with leg cramps disappearing.) During 2013 I had an episode (two weeks in bed) of Barr Epstein virus which left me very debilitated and weak. I could hardly walk. During this year, tremors increased and other PD symptoms surfaced:, dragging leg, leaning forward, pill rolling, frozen face, memory lapses... I also lost 33 pounds without any loss of appetite or dieting. First neurologist I visited put me through standard extensive bloodwork, and MRIs. Tried to be me on antidepressants (NOT!), told me I had Essential Tremors in 2014. Second neurologist immediately dianosed PD (Nov 2014), and put me on Carbidopa/Levodopa 10/100 twice a day. Symptoms abated considerably, and in the 5 months I was on it, I developed a rhythmic tapping in my feet (dyskinesia?). I have managed to gain back 15 pounds, feeling much less bony. I started researching again and found the NPF website, who located a PD specialist about an hour away. (March, 2015.) This neurologist is awesome, well recommended, listens and informs. He was disappointed that I was on C/L so early in the disease progression and wanted to try Azilect. I agreed to try, knowing I will be miserable for awhile until we get the meds right, but the tapping was cramping my feet badly. Tapered off C/L over two weeks, and am on Azilect (first .5 once a day, now .5 twice a day) since April 29, 2015, with increasing symptoms, almost non-stop tremors. I understand it can take several weeks/months to get an effect and am trying to be a "patient" PATIENT. (Pardon the pun.) My doctor had indicated that he might have to put me on something else in addition to the Azilect to help with symptoms. My question is, In your experience, what med do you feel might be of benefit with the Azilect? (Other than C/L, which we are trying to avoid using for a few more years.) Any other thoughts or comments? I am taking .5mg Azilect early AM, waiting at least an hour, then WP Thyroid, waiting another hour before eating. My second .5 Azilect is usually around 4PM to give me time before dinner at 6:30PM. Thank you in advance for your help and the great service you do on this forum. PatR620
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