 |
 |
hi all i'm so sorry to hear that barb is having such problems but i'm also very glad to hear that it sounds like she is getting good medical care i hope that joe bruckbauer's story has raised some awareness in this potentially life-threatening area of pd medication management [see my site = new voice/pienet/first things first/] my initial and instinctive reaction to fred's description of barb's situation? too much levodopa at a time may have resulted in intermittent and worsening 'spells' of levodopa overdose = dyskinesias >...For some time Barbara has had a lot of dyskenisia right after taking >her Sinemet 25/100 7to 8 tablets daily 1 or 2 tablets at a time 5 >or six times a day... if this has been going on 'for some time', it speaks clearly to me of barb's having reached a level of sensitivity to levodopa where she needed to reduce the individual doseage level but increase the frequency in order to ensure 'smoother' delivery to her brain >...Barb has been regular and disciplined in the use of her medications and yet >sinemet seems to be the culprit... maybe this addresses an issue that may be vital to all parkies and our medicos: we [the only people who can] need to listen to our bodies carefully as to our response to our meds and possibly entertain the idea that dosing according to bodily response [eeks!] might be more appropriate [gasp!] than dosing by the clock viz: i frequently take sinemet dissolved in a sweet drink, [i.e. 600mg levodopa in a 10 ounce coca cola bottle, which stays with me constantly] measured carefully by the mouthful, as i feel my 'kick-in' or 'kick-out' coming on this has generally worked out very well, resulting in 'on' periods of 3 and 4 and even 5 hours with no 'offs' [=underdose] and no dyskinesias [=overdose] [the main interference culprit, if there is one, being large-ish amounts of food!] fyi, my daily regimen is: 800-900 mg levodopa 90-90 mg carbidopa 10 mg selegiline 60 mg fluoxetine as i understand it, as pd progesses, the 'window of sensitivity' in the brain's response to levodopa becomes narrower and narrower; thus smaller and more frequent dosing seems to be the obvious med schedule response the idea of my taking 'one or two' tablets of sinemet at one time now, at my stage of sensitivity, heck!, gives me dysko-fever just thinking about it! be well barb i am praying for you janet At 06:35 AM 2000/03/22 -0500, you wrote: >Dear listmembers, >Our friend and fellow list-member Barbara Blake-Krebs is in the >ICU of University of Kansas Medical Center Hospital in Kansas City. She >was admitted on Saturday after an episode of "thrashing" dyskenesia, >caused her temperature to rise to 105 degrees. Her temperature is down >now and she is stable, but her husband Fred Krebs wrote that she will be >in the hospital for about another week, while they are reworking her >meds. He asked that I post the following to the list and welcomes any >suggestions you could offer on Barb's problems. He'd appreciate replies >to his e-mail address which is: [log in to unmask] >I'm sure Barb would also appreciate your messages of support. I'll >print out any list postings and mail them to her. >Barb - keep up the fight. Linda Herman > >Here is Fred's letter: >From: [log in to unmask] >To: [log in to unmask] >Cc: [log in to unmask] >Date: Wed, 22 Mar 2000 00:54:15 EST >Subject: Re: Re: Barb is in hospital > >Linda, Barbara would like to see what the folks on the list serve >would have to say about her situation. I am with her at the hospital >a great deal or I am teaching, so my replies may lapse a day or so. >Please let them respond to my e-mail address. Here is the situation >as I understand it. > >For some time Barbara has had a lot of dyskenisia right after taking >her Sinemet 25/100 7to 8 tablets daily 1 or 2 tablets at a time 5 >or six times a day. She also takes 3 mirapex daily, 0ne at a time and >3 Tasamar daily, also one pill three times a day. She takes elavil >(3 tablets) at about 10 pm each evening. She will take 1 or 2 xanax >during the day. > >During Spring Break March 13-17 I was home and she had some more violent >"thrashing" episodes on 3/14 and 3/15, but starting about 6 pm CST on >3/17 she had several back to back episodes and then after elavil she >joined our dinner party and ate some corned beef. 3/18 she had episodes >and by 11:00 Am she would not respond to my questions although she was >still breathing and had a pulse. A Ambulance took her to KU Med where >she had a 140 pulse, a 105 temp and bp of 58 over 31. > >The high temp was due to rhabdomyolysis which is a neuroleptic malignant >syndrome. the aggravated muscles released enzymes into the blood stream >which overworked the kidneys. We are told that there is "no good Reason" >as to why this happened . Rhabdo is associated with anti-psychotic drugs >which Barb is not taking and they function almost opposite to sinement. >Barb has been regular and disciplined in the use of her medications and yet >sinemet seems to be the culprit. One of the docs in ICU has researched for >this type of "monster" dk and has found only one reported instance of rhabdo >associated with regular use of levadopa. Barb is stable now on most vital >signs. She is doing 6 1/2 tabs a 1/2 tab every 3 hours and in these >early stages there seems to be little dk and no rhabdo. Any comments or >suggestions? >Fred Krebs [log in to unmask] janet paterson 53 now / 41 dx / 37 onset a new voice: http://www.geocities.com/janet313/ 613 256 8340 PO Box 171 Almonte Ontario Canada K0A 1A0