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Barbara, Sorry to hear of all your severe problems. Some random thoughts; It is not a good idea to stop (or start) any medication suddenly. PD meds are finely balanced and the dose of one almost always effects the dose of another Therefore , transition slowly and wait several days before declaring a change a failure or successful. You shouldn't be in the position of making decisions about your meds. Your doctor should make those decisions (with your input). Of course the final decision is yours but the recommendation should come from him/her. What you get from the internet etc should be considered but an educated opinion is what you pay him/her for. Having said that, I am aware that it will be hard to get a reply from any research oriented movement disorders specialist since there are Meetings in Barcelona this week. He/she should have someone covering for them who is knowledgeable. BTW regarding the Parlodel (Bromocriptine) when I took the drug it came only in 5 mg tabs- are you 200 mg seems like a lot. The possibility of STN surgery sounds like it may be a good- but scary- option. I have had it after having gone through offs and dyskinesias certainly not as bad as yours but quite severe nonetheless and the stimulators helped both. If you are a candidate, I certainly would consider it. The response for me was miraculous. If you want more info you can read the article I wrote for the HITH gang. Or contact me and I will e-mail it to you . I suspect that the rhabdomyolysis came from severe dystonia due to a change in meds or medical problem. The above are just some random thoughts in reaction to your questions. Charlie . ----- Original Message ----- From: "Barbara Blake-Krebs" <[log in to unmask]> To: <[log in to unmask]> Sent: Saturday, June 10, 2000 11:36 AM Subject: Post-Rhabdomyolysis meds > Hello all... > > Picture me discouraged, befuddled, and anxious. It's put me into > POCRASTINATION mode!!! What is going on with my meds, I ask, and why. I > am faced with making some immediate decisions re: which meds to be stay on, > switch to, or drop. > > code = presently on; * = on pre-hosp; = on post-hosp. + = was scheduled > to start Mon. 6/5 > > ƒParlodel vs. Mirapex* vs. Requip + > > ƒwhether to restart a COMT (Tasmar* or Comtan ) > > ƒElavil and xanax* vs. Ambien, Antivan, & Valium > > ƒSinemet 25/100 - 6-8/day (2 + 2 + 2 +2)* nighttime - ca 1999(+2) ; 8-9/day > [daytime (1 + 1/2 + 1 + 1/2 + 1 + 1/2 + 1 + 1/2 + 1) + nighttime(1/2 + 1/2 > + 1/2) + 1/2 - ?] > > I am having quite a bit of "freezing" time right now. The last time I > experienced so much was when I attempted to go off the Tasmar at the time of > the warnings. In fact, it kept me from going off Tasmar. > > BACKGROUND > When I arrived here 4/21/00 from the nursing home, I recall feeling > quite "frisky." While COMTAN often hadn't agreed with me during the previous > weeks and sleeping was a challenge due to a tight throat, the meds overall > seemed to be o.k. The major complaint since has been a tight throat during > the day also with some disquieting episodes. But my strength seemed to be > improving, and I felt optimistic. > > Then last week, the episodes seemed to get worse and last longer...this > impression was one that my home health care worker emphasized to me when I > mentioned it. This fellow is a curious one, imo. (As we felt the need > financially, etc., to discontinue home health care, this week we have been > without.) Anyhow on Friday, I asked Fred to call our MDS and speak to him of > my tight throat concern. THAT certainly started to ball rolling. By evening > one of hiis nurses had called us twice -- the first to bump us into an appt. > Tues.; the second to say the doc said we "could/should" (?) stop the COMTAN. > NOTE: Our MDS' style, imo, is to find out what the patient and/or cg "want" > to do and often go with that. Evidentally, Fred had complained about the > Comtan. > > As you might imagine, going off a med is no picnic! At first we took > some doses at our discretion. Monday, I think was a zero-Comtan day. > Tuesday a.m I had a LOT of rigidity. We decided with the nursethat we would > leave for the appt. whenever I was able -- as it turned out, we left an hour > after I said I was able, despite my saying we shouldn't as Fred's determined > side kicked in. I was almost totally frozen at the clinic. Øne nurse who > saw us quickly told me NOT to take any meds until the doc could see me -- > that proved to be quite a while. > I was so off when he came in, I couldn't speak until near the end of the > longish interview (having taken 1/2 Sinemet when it began.) > > The upshot was I would stay off the Comtan, try to readjust my Sinemet > per schedule Fred suggested, and switch from Parlodel to Requip next Monday. > (I asked why not Mirapex which I was on pre-hosp. He referred to the fact > that it had taken me quite awhile to adjust to Mirapex originally.) Don't > most people have a long "break-in" time with Requip? Do most people prefer > it to Mirapex? He also said if we failed to get the meds to work, he would > recommend a STN (yikes!) > > This week has been very difficult both physically and emotionally -- the > latter in part due to Fred heavy presence in the process. (another story!) > Right now things have gotton even dicier in response to my call to Pahwa via > Darla in which I suggested I might go back on Comtan. Pahwa (who is once > again on his way out of town) said I could either do that or go back on > TASMAR. > > So HELP!!! WHAT SHOULD I DO? [NOTE: MDS who will offer their opinion > are at a conference this week starting today for travel.] > > 1. Go back to my former meds with some modification in scheduling of dosage. > If so, what? > > 2. Something else? > > My best regards, > (a tired) Barb > P.S. Below is a summary I never completed: > > A Recent Case of Neuroleptic Malignant Syndrome - Looking for answers > by Barbara Blake-Krebs and Fred Krebs > > > > 1. What set off the series of 5 unusually “violent” dyskinetic episodes on > Mar, 17 & 18, after the last of which Fred called an ambulence which took an > unconsious Barbara to the ICU of Kansas University Medical Center where Fred > was shocked to learn that her life was in danger? Symptoms included low > blood pressure, renal failure, high 104-5’ temperature. > > 2. What, in retrospect, were the warning signs? > > 3. What was the diagnosis and treatment (in and out of hospital)? > > 4. Is there anything else or different that might be done at this juncture > to improve Barbara’s recovery? > > > > > > > My condition continues to 'buffalo" Fred and I. Here is a recap recent > events, changes, and > > MEDS > ========================================================== > Pre-Hospitalization | Post-hospitalization > ========================================================== > 6-10 Sinemet 25/100 5 - 6-1/2 Sinemet 25/100 > Tasmar 5 Comtan 200 mg > 3 Mirapex 4 Bromocriptine 200 mg > > > > > > > > Meds (pre-hospitalization) (6-10 25/100 Sinemet/day; 3 __Mirapex; > Tasmar; > 2/3 25 mg Elavil at bedtime for neck pain. > > 8 a.m. 2 Sinemet > > Noon 2 Sinemet > > 4 2 Sinemet > > > > Meds (post-hospitalizaton) > > 6 a.m. 1-1/2 25/100 Sinemet > 1 - 200 mg Comtan > 1 - 200 mg Bromocriptine > > 9 a.m. 1- 25/100 Sinemet > 1 - 200 ng Comtan > > 10 a.m. 1 - 200 mg Bromocriptine > > noon 1 - 25/100 Sinemet > 1 - 200 mg Comtan > > 2 p.m. 1 - 200 mg Bromocriptine > > 3 p.m. 1 - 25/100 Sinemet > 1 - 200 mg Comtan > > 6 p.m. 1/2 -25/100 Sinemet > 1 - 200 mg Comtan > 1 - 200 mg Bromocriptine > > (Added 5/3/00) > 6 p.m. - 6 a.m. 3 1/2-25/100 Sinemet (as needed) > 2 .5 mg Ambien (as needed) > > As needed 1/2 - 0.5 Lorazepan (Antivan) > (every 8 hrs.) > > > > >