Hi all I suffer with PD and was diagnosed... - Cure Parkinson's
Hi all I suffer with PD and was diagnosed about 18 months ago, I take 2 x 125 mg madopar 3 times a day and 1 x 0.7 mg of pramipexole 3 time
MADAPAR 2X125X3=750 MG/DAY TOO MUCH
Yes my PD specialist nurse has told me that they try to keep the dose of Levodopa down to or below 600mg per day. This is to avoid side effects such as dyskinesia and halucinations. On the other hand 0.7mg of Sifrol E/R is quite low. I take 2.62.
Hello
I am on Madopar 125 1 and 1/2 tabs X 3 daily. Can you expand on it. Should I be on it at all and can I stop taking it 'cold turkey'. On Sifrol ER and Azilect. ( just added to the pot). 5 years ago I walked into my GP for a consultation which ended in referral to Neurologist and hence all those drugs. Wonder how I would be feeling now if I had ignored initial symptoms of slight tremor in left hand and got on with my life.
Don't go cold turkey! It's a dangerous idea.
The patient information sheet included in each box of tablets may mention Neuroleptic Malignant Syndrome (NMS) that may occur if you do go cold turkey. It is rare apparently but in any case you should follow the advice of your GP/consultant about weaning off PD drugs. NMS can be fatal.
I wont.
From Pete-1
Bridieelena,
Is that a 125mg and a 62.5mg i.e. one of each 3 X per day? I take Madopar 4 times per day but one of those 4 I take an extra 62.5mg tablet making 562.5mg per day.
Madopar consists of Levodopa and Benseraside. A 125 tablet has 100mg of Levodopa and 25 of Benseraside.
I also take Pramipexole E/R (Sifrol) 2.62mg per day and 10mg of Selegiline per day.
My main reason for taking Levodopa is so that I can walk without falling over every few minutes. The difficulties with mobility occurred prior to taking the medication. Life of any significant kind would be intolerable without it.
All my other symptoms are either easily tolerated or at least could be managed without medication. I don;t have a tremor not one that is visible. Muscles under load do tremble in such a way as to make me feel exhausted and perhaps slightly bilious.
I would really like to know how a normal visible PD tremor feels, in fact I have a question on this forum about how tremors make you feel but people have got distracted onto other topics and so have no answers that are relevant to my original question.
If I had a normal PD tremor and the only significant factor in that was a degree of embarrassment and all other symptoms were minor, then I would not bother with medication either.
Pete-1
Hello Pete
With me the tremor affects my ability to style my hair. Arm is very weak. If it affects the other side it will be practically impossible to do my hair at all. Peeling vegetables etc is a challenge as is opening jars. I manage but again if it affects the other side all those activities will be very difficult. I guess its the 'fine motor skills' which will be lost.
I don't want to speculate on what could happen and I take each day as it comes......although since joining this Forum, I cant stop thinking about PD.....so not sure how long I can keep this up.
I need to believe a cure is just around the corner and the horrid drugs will be just a memory.
Incidently, I take exactly the same amount of Madopar as you plus Sifrol ER....1.5mg once a day and Azilect....1mg once a day.
Bridie. Qld. Australia
Hi Bridie, try to avoid thinking about it and dont go on line to often, it can be to negative! im on similar drugs and ok, do get weakness in arms and fingers, try not to think about future stress makes it worse!
G'day Charlton
Lovely to hear you feel the same. Shall try to stay away for a while but I am a sticky beak by nature.
I take 2 of the 125 mg madopar 3 times a day = 6 capsules of 125 mg
The tremor will not go away on it,s own and once you have parkinson,s it has to be controlled with drugs as much as we do not like taking them trying to get on with your life without medication will not work you will only get worse
We need to change the way we're treated when first diagnosed. It is enough to come to terms with the fact that we have Parkinson's. Neurologists should give us breathing space so that we have time to understand what Parkinson's is all about, what treatments are available, whether we need to take drugs immediately, what side effects we may endure, what kind of support is available for ourselves , our partners and our family, etc We should then be sitting down together to discuss all the options. It is a this point that I believe we will have the confidence of dealing with our Parkinson's.
I do wish I had not been put on meds straight away. I thought I was going to die and took me a whole year and more to come to terms with having it.
I am inclined to agree with you about not going straight on the medication . they should explain how Paekinsons can effect you and that everyone is the same by any means . My husband was started on the low dose Sinemet and they increased every 4 months . We thought it was sort of helping and hoped the increases would further this . In his case I am not sure it did but like you so rightly say you forget how it was before you ever start on the meds . . In fact we have now been reducing the doses he isn't any worse or better . In out case I think he had in knowingly been fighting it for years before ever it was finally diagnoses .
That's a good idea getting The family involved when it is explained because it does affect the agmily as a whole . It's difficult for the sufferer to explain now they feel so how can the others understand how it is .
Bigmama, you seem so insightful and practical. I wish too we had had a round table conference before swallowing anything.
I want to start again with a second opinion and this time have my husband attend with me.
Bridie Qld Australia
Dear Bridieelena, hope you are keeping well, positive and strong. My personal feeling is that you'd benefit from joining a support group and if you don't have one, start a group or start a forum online. I see there is a Qld Parkinson's organisation in Springwood but not certain if you have one local to you like we do in the UK. I started my own about 10 years ago and it is going strong. By being with people in the same situation as yourself, you gain in confidence to deal with Parkinson's and you also get to meet some amazing people and take courage from that. We also have in the UK an Expert Patient Programme which gives you the tools to manage your long term condition on a day-to-day basis. See expertpatients.co.uk/
I hope you become stronger each day and begin to see that you are in charge and not Parkinson's. All the best.
Good morning Bigmama
I do belong to my local group of 3. The other 2 are male and both have had DBS surgery. I did not know them before surgery and believe that they could not dress themselves or eat without some kind of mishap.
They both drive locally but they are far from well. One still has a lot of tremor/jerking/shuffling /frozen features. I dont like what I see and am determined not to go down that path. I try not to miss a meeting though as we talk about family and life in general and enjoy a coffee. I do wish there was another female though. I could drive 2 hours to the next Town which does have a large group but that is over a major highway. It could be the answer though......we could stay the night and return home the next day.
My locality is primarily Tourism but within 20 minutes is a Sugar Cane growing area in which over the years a tremendous amount of pesticides has been used. I have read somewhere that now they are thinking that could be the culprit along with my fetish of 'clean, clean clean'. I think I have bought every cleaning agent on the market.
We believe there has to be more sufferers in the area but they are not acknowledging the fact.
I know I talk about going 'cold turkey' but never would as I do read the information sheet which comes along with the tablets plus am always on the internet.......that throws me for a while as I don't like what I read and can believe I will end up as 'the worst case scenario'.
I do have a friend with Essential Tremor and she could end up in a wheelchair......has been told that could be within the next 10 years. Her head is never still but she lives 1200 kilometres away and we only catch up infrequently. We keep in touch by email.
With this forum its as if everyone of you are just around the corner and its almost as good as being part of my local support group.
Hi to all thanks for your replies martin
I have been diagnosed with Parkinson's since 2005....I take sinemet (25/100) 3x a day along with azilect 1 mg 1 x a day along with .05 mg requip 3 x day. At night I take 2mg requip, 300 mg gabapentin ( RLS) 6mg neurotin ( neuropothy) and 4.5 low dose naltrexone ( for my immune system......
Is it not better to adjust the dose as per our requirement and to suffer little bit.It is known fact that L dopa will be ineffective at one stage.hence I am experimenting at lower dose
125mg Modopar 3 times a day
1mg Azilect
4mg Requip (slow release)
Seems to be working ok
Diagnosed 4 years ago
Dr admitted me to hospital and monitored me for 2 days off all drugs. All went so well I went home unmedicated.
Within 2 days CRASH. Am still unwell trying to get back to stage I was at before going 'cold turkey'. ( Now I know what its like to be confined to a wheel chair)
Will most likely have DBS within 2 years.
Am on Madopar. 11/2 three times....every 6 hours
and SifrolER x 2 once a day.
