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03-21-2010, 07:30 PM | #11 | |||
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Steve, you seem to be getting a paradoxical boost in levodopa effectiveness with protein, whereas one would expect to see a slowing of effect if the amino acids from the digested protein are simply commpeting with the drug at the transport sites into the brain. I can't expain it by any biochemical mechanism that I know about unless there is some kind of synergy between transport of levodopa and something else (another amino acid?) from the ingested protein.
I personally do not experience significant interference in symptom control between a normal meal and L-DOPA meds, even when taken within the same hour. Another mystery!! I hope it continues to work for you. |
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03-21-2010, 07:48 PM | #12 | |||
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Quote:
We survived the nor'easter..Got 5" of rain though
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There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK |
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03-21-2010, 07:50 PM | #13 | |||
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There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK |
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03-21-2010, 07:54 PM | #14 | |||
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I was taking Clonazapam for sleep..now I take Ambien because I built up a tolerance to Clonazapam, I found it was better to switch meds than to take more
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There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK |
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04-01-2010, 05:04 PM | #15 | |||
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I think I know what the problem was..Three med changes in a short period of time, and I think what really screwed me up was when my insurance forced me to take Comtan and Sinemet seperately, vs Stalevo..I never had dyskinesia untill I did that..Now that my neuro told the insurance co that the mix of Comtan/Sinemet didnt work, and got Stalevo approved, Ive been doing alot better..I dont have off periods untill after 9:00 at night, and they arent as bad as they were..I finally got three consecutive nights of sleep for a change, and 95% of the dyskenisia, and the dystonia is gone..I just get a little inbetween doses if Im late taking my meds
One would think taking two pills, instead of one with the same drugs would be the same, but they're not..Not for me anyway
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There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK |
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04-01-2010, 06:12 PM | #16 | ||
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Steve I guess it is what your body is accustomed to, and copes well with that counts, and that is different for us all.... so glad that you got the stalevo approved and you are feeling better, and your meds are working for you again. Oh, and it is great to have you back posting, you have been missed...
All the best for a good holiday, Lindy |
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"Thanks for this!" says: | stevem53 (04-01-2010) |
04-01-2010, 06:22 PM | #17 | |||
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I worry about how the current flooding might be affecting you. Do you still have your boat? Robert |
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"Thanks for this!" says: | stevem53 (04-01-2010) |
04-01-2010, 06:26 PM | #18 | ||
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In Remembrance
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Hi steve..
Are you and your posessions ok? Rhode Island looks real bad . and stalevo....it is so outrageously expensive. I'm doing well on it - my doctor gave me samples and today i filled the first prescription - and smacked against another wall. It's out of control - outrageously jaw dropping price. well that just makes me want to race the next treatment to the finish line doesn't it you?
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paula "Time is not neutral for those who have pd or for those who will get it." |
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"Thanks for this!" says: | stevem53 (04-01-2010) |
04-01-2010, 10:01 PM | #19 | |||
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My meds wore off an hour ago, and Im a little sluggish, but I am not that bad at all..nothing like I was a few days ago..When my meds wore off I was almost paralyzed..I couldnt drive when I was in that condition, and wouldnt take the chance..It is the worst thing Ive ever felt in my entire life..I got to the point, that I feared what was going to happen inbetween the next dose
Robert.. Thankfully, I didnt lose anything in the flood..I live on the higher ground here, the water ran off towards the rivers..I got a half inch of water in the cellar, that was it I still have the boat..Havent been out in a while though Paula.. Im ok..It was strange because Ive never seen a flood before..The last day it rained, the ground wouldnt absorb the water anymore, and I saw rivers of water draining from places Ive never seen it drain from before It was the first time in Rhode Island history that they cancelled shcool on account of rain Yes, that Stalevo is some expensive!..I get some from the Rx, and the rest samples from the Dr Speaking of cost, there's finally a generic Mirapex on the market, and it is as expensive as the brand name!!!..Dont get me going on drug costs!!
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There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK |
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07-18-2010, 07:36 AM | #20 | ||
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New Member
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I have asked myself this question so much myself lately and I want to share my experience if it will help anyone. My 79 year old mother has had PD for over 20 years and has always shown a slow progression with very few of the major symptoms that I read about. 2 years ago, she went to a PD clinic for treatment rather than a local neurologist. He began her on a sinemet cr regime. She began with 2 25-100 per day and has gone up from there. About a year or so ago, she started into a rapid decline and they begin a more agressive dosage to stop "wearing off". Anxiety began to happen, more weakness, tremors and stiffness. Currently they have her at 9 50-200 cr and an increasing dosage of a half of a pill for 8 weeks until 13 total pills 9x a day.
In December they started treating her anxiety with Celexa and more Klonopin. It conntinued to worsen so switched to Remeron with even more severe attacks. I was not involved with my mom's treatment, we have two nurses in our family and they went to the doctor with mom and handled the pill dispension boxes. Finally after I continued to question this treatment and 3 weeks ago they almost had to put mom in the mental ward of the clinic for evaluation because she was in a " severe agressive parkinson's attack" I had enough and insisted to talk with the doctors about taking her off some of her meds. Because I questioned 2 of the "best" parkinson doctors. My nurse sister in-law handed me the meds and said "here you go since you are now handling all mom's medical issues, you take care of this." So July 1st began a new phase for both my mom and I. My five older siblings and their spouses are waiting in a disgusted holding pattern for "little sister's" desperate attempt to try to "help" mom. I know this is getting way to lengthy, but the main point is, so far it is the best thing that has happened to mom in about a year. Time will tell if it proves successful. I have used the internet to thoroughly research her meds and used forums like this to try to find any similarities to what mom had. I have just completely removed her from remeron because I insisted she was having a bad reaction with this.( dr. okayed this "reluctantly". Switched to Ativan from Klonopin ( it takes ativan 10 minutes to see results vs 45 min- 1 hour for klonopin). Small doses of this has also proven to reduce her tremors significantly. I have slowly begun to reduce her Sinemet Cr and the inteval time accordingly. Her anxiety has become totally controlled with ativan and the accurances minimized to one or two a day. A few unexpected results have shown up already which are huge for her. Incontinance is gone and no more depends! Sleeps through the night only getting up once to go to the bathroom, her appetite has returned, she stays up later in the evenings, and she again can go out for breakfast and dinner with my dad and even has begun to take more care with her appearance( make-up and dressing nicer) I say she acts more like she again can enjoy living and not preparing for dying. While I do not at all recommend going against your doctor, for me a desperate situation called for desperate measures. I did not do it lightly and spent hours and hours in research checking the best methods to even attempt this. I hope she continues to improve and i can find a good maintaince level that she has the most comfort with. I asked myself when I began this too " When does the treatment become worse than the disease? ( only my oldest sister has in any way shown cautious encourement and support so far ) |
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