LindaJ
2 post s
14-Sep-2006
10:25 AM
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O.K., my symptoms are progressing rather quickly it seems to me. I have been e-mailing with my Dr since my first visit 5 weeks ago. It is starting me on my choice of Mirapex or Requip. I don't know which way to go. I also wish I were dreaming all of these symptoms and not start any meds. Can someone please give me some advice on the meds, and should I try to hold off as much as possible. Linda
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dab810
10 post s
14-Sep-2006
1:50 PM
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Hi Linda It is scary! I think many of us with pd feel that the meds aren t working well enough or the pd is advancing too fast. There are two schools of thought 1) take only minimal doses and save the more powerful meds ( sometimes with side efffects ) for later when you really need them. 2) Take whatever you need for now and enjoy life to the fullest while you are reasonably healthy.... I m doimg theory #2..... Talk as much as possible with your Dr and ask him/ her questions and express your concerns. Dosages can always be raised or lowered. With p d there is a constant fine tuning of meds. Hope this helps also read the many pages of archived messages on this board it s ful of information that could help. Good Luck. Dave
Last Edited dab810 on 14-Sep-2006 1:51 PM
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Roy48
1 post
15-Sep-2006
3:09 AM
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Yeah it is scary, I agree with #2 thinking When I started taking meds 8 yrs ago, I thought my god what a lot of medicine am i really this bad? But then when the meds kick in and I am on again I realized how good it felt just to feel good! Be a good patient and take your medicine, but remember it is your body listen to it the Dr's don't live inside and they don't really know how u feel.
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qbo
3 post s
15-Sep-2006
11:50 PM
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linda,if i was in your position i would start the meds and the glyconutrients, in retrospect my very severe case would very likely have been reversed if i had started on the glyconutrients yrs ago,,,,,,,, beware of mirapex, enter ' mirapex litigation' into any search engine, pax christi, andy
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Lindyb
1 post
1-Oct-2006
11:30 AM
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LindaJ..this is interesting, My name is Linda Jones..i am wishing u the best of future. I am presently taking mirapex ..not a whole lot...6 .5 daily. Personally, so far this has been wonderful too me. I have talked to numersous people who have had tragic consequencies due to mirapex. I have only taken it a year ..however..I have been totally much better with it than without it. Perhaps I am developing different behaviors-thats hard to know about yourself--i have friends and family that I ask them to let me know if they see something that is different than normal for me...In my opinion I would at least give the medicine a try before elimating it. Linda..the only thing I have found good about Parkinson's is...the people you meet. Please let me know how your are doing. I know what it's like to be scared...Lindyb
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LindaJ
3 post s
2-Oct-2006
8:26 AM
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I started the Mirapex 3 weeks ago. I am now up to .5 mg three times a day. I see a huge difference already. I am happy that I decided to start the meds. I can practically jump out of bed, I have so much energy again and most of my pain syndromes are gone. I will try golfing this weeks. The only thing that I am wondering is, will the mirapex that away the tremors completely. When I wake up in the morning I have tremors for a couple of hours until the mirapex has been in my body. Thanks for your replies, I appreciate it so much.Linda
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Lindyb
2 post s
3-Oct-2006
7:45 AM
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LindaJ..good deal, glad to hear it. It did the same for me and I still have the energy -now, a year later. Super..LindaJ
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bill2ca
1 post
5-Oct-2006
1:33 PM
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Hi Linda, It is hard to know what to take since there are several choices. I was diagnosed 3 years ago at ago of 42. I have taken requip, mirapex and stalevo over the course of three years. Initially i started with requip which helped quite a bit with stiffness but not so much with tremors, although I did not feel well for about an hour after I took requip, then started to develop obsessive-compulsive behavior (gambling and other stuff). I switched to mirapex, which was not as effective on the stiffness as requip but I felt much better, however, my obsessive-compulsive behavior continued. Both requip and mirapex are dopamine agonist, which in some peope causes obesessive-compulsive behavior. It is well documented, you will find many articles on the web. Just be aware of the side affects of these drugs. Finally i swithced to stalevo on a medium dosage. It helps with the stiffness, but still not as effective as mirapex or requip, but the obsessive-conmpulsive behavior as disappeared. I think each of these drugs has there pros and cons, my recommendation is to try requip or mirapex first, just be aware of the sides affects because they can be harmful. Good luck, Bill
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ddspch56
5 post s
5-Oct-2006
8:16 PM
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Hello Linda, You've received a lot of excellent advice. Have had Parkinson's for 3.5 years. Would only reinforce that: - you need to make sure that you have a doctor that will truly partner with you. It is impossible for them to know exactly how you feel or what is happening unless you tell them. - also encourage you to get the medications you need. I wasted energy scared of using adequate medicines. - never used 1Mirapex, but had a really nasty compulsive problem with Requip. Not at first on low dosage, but when I hit 8+ mg I became a different person, nearly destroyed me. My doctor said that only about 3% of people were Requip of had problems and 6% on Mirapex. Make sure you have someone that you can really trust that observed you closely. - I have had excellent results with the new drug, Azilect. just started 2.5 months ago, results amazing. Feeling better than I did three years ago. Hang in there. A part of the journey is adjusting our expectations for ourselves. I have learned, and been very thankful that the people around me have been very compassionate and understanding. A lot of times people have been more willing to help me and I was too independent to accept their help. There can be special learnings and new opportunities that this experience along with the bad. I wish you well!
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LindaJ
4 post s
6-Oct-2006
7:17 AM
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I have been on Mirapex for three weeks today. I am taking .5mg I feel really good and I am doing things that I have not been able to do for years. My only concern is that my tremors are still pretty bad. Is the mirapex suppose to help with the tremors? My Dr said to stay at .5mg for another two weeks and I I do not have side effects he might bring me up to .75mg Thank you to all who answered my prvious message "scared as hell". I truly appreciate it and I am not so scared anymore.
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CherylR
1 post
17-Oct-2006
9:16 PM
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Does anyone have Cortico basil degeneration? I am looking for support and any new research or information I can get. My mother has the disease. We have been going to Mayo Clinic for 10 years.
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Greg63
2 post s
19-Oct-2006
1:09 PM
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Linda...your message said you were on 6.5 per day? I thought 4.5 (1.5 3x/d) was the max?...does anyone else have experience going higher than 4.5/day? Thanks
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Steve H
1 post
9-Aug-2008
9:59 PM
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Anyone still posting here? My wife has cortical Basal degeneration. Would like to connect with others who are dealing with the same?
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Tif
1 post
6-Sep-2008
7:47 PM
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Steve, My brother has corticobasil degeneration. I have been posting on a website at wemove.org. There are many on that website that either have the disease or they are caregivers of people with the disease. If you will go to that website and then to the discussion part, then scroll down to the cortibasil area, you will find much information and will be able to connect and ask any question you desire. It is a very difficult disease for all concerned. This site has wonderful caring people who KNOW first hand what those connected with this disease are experiencing. My brother was diagnosed with this disease approx. four and a half yrs. ago. If I can help in any way, feel free to post back and I will try to answer any questions I am able to. I just happened onto this discussion site. It looks like many of these are older. I hope you receive this. Tif
Last Edited on 6-Sep-2008 7:51 PM
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DB
9 post s
7-Sep-2008
12:16 PM
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I also feel like I'm not doing as well on my meds but my neurologist sees a lot of improvement. I am taking yoga classes and I believe it has helped tremendously. My balance and range of motion has improved.
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michelle
156 post s
7-Sep-2008
9:38 PM
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HI - I think LindaJ meant she was taking 6 pills that are .5 mg each, not 6.5mg daily. Anyway, I have taken mirapex for almost 3 years. I also have more issues in the morning because of the lack of medicine over night, so I take an extra 1/2 tab in my morning dose. So, I take 1.5 mg when I first wake up, the 1.0 mg at 11 am and 1.0 mg at 6 pm. The extra kick in the morning makes up for the down time overnight. BTW, when I started I was taking 1.5 mg 3x per day and it was too much. I wasn't sleeping well and I lost a lot of weight. Mirapex is not completely a bad drug (overall it's changed my life), but you do have to pay attention. Michelle
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chirstinam
5 post s
24-Sep-2008
12:59 PM
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I am taking carbidopa/levidopa and my Parkinson's is nearly under control. When I first started this med it didn't work fast enough So they gave me a blood pressure med( I can't remember its name). The effects were almost immeadiatly. After 3 months I was taken off the blood pressure meds. My PD is still under contol.
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