How to get the drug regime right for you !
Wondered if anybody has got an insight into this.I'm 57 years old diagnose for nearly 2 years and am on 3X125 madopar (ldropa) with 20 mg of citalaparam (antidepressant).
I get the typical symptoms of stiffness, slowness and unsteadiness, also experience fatigue and shaking. The madopar seems to help with the stiffness, slowness and unsteadiness but not with the shaking or the fatigue… And sometimes
I feel so "off" that I can barely do my work (I work part-time in IT). It also makes it very difficult to play the guitar… This is my main hobby and I
play in a band… But the last gig was murder. So the madopar doesn't seem to help much in these two respects.
From what I've read I am getting the impression
that people take a variety of drugs and there seems to be no hard and fast rule
about what works best… For that reason the articles sometimes suggest trial and error as a way of working out what's best for you because as they stress
"everyone is different".
do people on the forum see this is as the best way forward, to try different
drugs discarding them if necessary until something is found that works well.
Do you think it's acceptable to try drug (e.g.: a Dopamine agonist) simply
to see if it works. I feel the drugs I currently take on doing some good
but I wonder if experimentation would allow me to find a drug that would make a big difference and allow me to play the guitar properly again and perhaps more importantly thrive in the workplace.
Any views?
ojalahey(Andy)
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Hi
it took a long time to find the right drug for me. I started on mirapexin which made me feel so ill I could barely get up off the sofa. How I managed to work. I still don't know.I tried these for six months.
I then tried neupro patches which didn't make me feel ill but didn't help either.and they were so big I began to run out of places of my body to put them.
I then tried Requip XL . I got to 6 mg without any problems, which helped with my symptoms and didn't make me feel ill, but when I went to 8 mg, which was my planned maintenance dose, I began to get sleep paralysis, hallucinations, and sparkly vision. Because of these symptoms my Requip was reduced back to 6 mg and Azilect was added. And together they make a big difference.
The best drug I have been given so far is amitriptyline, it is known as an antidepressant however, if used on a very low dose it acts as a muscle relaxant. It was amazing, I felt so much better. Almost immediately.
I had been getting lots of dizziness, and a foggy sensation in my head. The amitriptyline got rid of that straightaway, so it must have been tension and stress in my neck that was causing the sensations in my head.
I have been diagnosed for 18 months now and had symptoms for a good year before that. Apart from the occasional tremor when I'm feeling stressed, and some stiffness in the evenings, you wouldn't know I had Parkinson's disease. I still work full time in a stressful job, managing a team of people who work with children with disabilities, learning difficulties and some life limiting conditions,I love it and would hate to have to give it up, so far, despite a shaky start the drug regime seems to be working for me.
as you say it's a very individual condition and what works for one person won't necessarily work for another. But it is worth persisting until you find a regime that suits you.
Good luck,
Caroline
it took a long time to find the right drug for me. I started on mirapexin which made me feel so ill I could barely get up off the sofa. How I managed to work. I still don't know.I tried these for six months.
I then tried neupro patches which didn't make me feel ill but didn't help either.and they were so big I began to run out of places of my body to put them.
I then tried Requip XL . I got to 6 mg without any problems, which helped with my symptoms and didn't make me feel ill, but when I went to 8 mg, which was my planned maintenance dose, I began to get sleep paralysis, hallucinations, and sparkly vision. Because of these symptoms my Requip was reduced back to 6 mg and Azilect was added. And together they make a big difference.
The best drug I have been given so far is amitriptyline, it is known as an antidepressant however, if used on a very low dose it acts as a muscle relaxant. It was amazing, I felt so much better. Almost immediately.
I had been getting lots of dizziness, and a foggy sensation in my head. The amitriptyline got rid of that straightaway, so it must have been tension and stress in my neck that was causing the sensations in my head.
I have been diagnosed for 18 months now and had symptoms for a good year before that. Apart from the occasional tremor when I'm feeling stressed, and some stiffness in the evenings, you wouldn't know I had Parkinson's disease. I still work full time in a stressful job, managing a team of people who work with children with disabilities, learning difficulties and some life limiting conditions,I love it and would hate to have to give it up, so far, despite a shaky start the drug regime seems to be working for me.
as you say it's a very individual condition and what works for one person won't necessarily work for another. But it is worth persisting until you find a regime that suits you.
Good luck,
Caroline
Caroline
~~~~~~~~~
Thank for your interesting Post , sounds like the drugs are working for you .
Doent sound like you take any DOPAMINE at all, which is the sole Park drug I
do take... u r on a Dagonist(requip) and an Inhibitor(Azilect) plus the Amitrypine (muscle relaxant) .
U have been dx'd about the same as me but seem to have tried more options... I
think i should be trying to find the right fit but my Specialist wnats me to
stay on the same drug ..... i cope but am right at the limits where work and
playing music are concened .... I imagine I coud do better but the Spec doesnt
agree ...... and I'm not sure his approach is correct ...... given that people
seem to react differently .... surely u need to try different drugs .
Anyway thanks a lot for your mail !
ojala/Andy
-----------
~~~~~~~~~
Thank for your interesting Post , sounds like the drugs are working for you .
Doent sound like you take any DOPAMINE at all, which is the sole Park drug I
do take... u r on a Dagonist(requip) and an Inhibitor(Azilect) plus the Amitrypine (muscle relaxant) .
U have been dx'd about the same as me but seem to have tried more options... I
think i should be trying to find the right fit but my Specialist wnats me to
stay on the same drug ..... i cope but am right at the limits where work and
playing music are concened .... I imagine I coud do better but the Spec doesnt
agree ...... and I'm not sure his approach is correct ...... given that people
seem to react differently .... surely u need to try different drugs .
Anyway thanks a lot for your mail !
ojala/Andy
-----------
Hi I am also 57 been diagnosed two years and am on 125 mg x 3 madopar.Was put on Mirapexin to start with but felt very Ill and my blood pressure dropped alarmingly. Madopar , as you say, has helped with stiffness and soreness and I can walk normally again and for much longer. My energy levels have also improved but still get very anxious and have tremor and some dyskinesia in legs. My consultant told me it is trial and error with drugs and agreed to my request to be put on a levodopa drug and is proposing to add a different DA at my next appointment. Am very wary due to experience with Mirapexin.
I personally think we should tell doctors how we feel about drugs as only we know how they make us feel. Yes it is trial and error and if you want a better quality of life if possible let your consultant know you would like to try another drug. You ve nothing to lose and,last resort, you can always change consultant.Easier said than done I know but good luck and do hope you re playing guitar again soon.
Best wishes. Samdog
I personally think we should tell doctors how we feel about drugs as only we know how they make us feel. Yes it is trial and error and if you want a better quality of life if possible let your consultant know you would like to try another drug. You ve nothing to lose and,last resort, you can always change consultant.Easier said than done I know but good luck and do hope you re playing guitar again soon.
Best wishes. Samdog
hi Andy
the following i just my own opinion
levadopa is by far the best drug but only last short time and 3 won't cover 24 hours.
DAs are becing unfashionable because of OCD - perhap your neuro thought it not worth the risk. there are also lots of other side-effects. but a small dose might help guitar playing a bit????
maob inhibators might make the ldopa last longer but you might well not notice.
other drugs are rarely given or for later on.
i have 3 or 4 ldopa 100mg during the day and 200 slow release during the night. i am also on a low dose of DA.
guitar - try and time playing for an hour after pill. make sure pill is on empty stomch with large glass of water
try finger stretching, especially puling backwards and sideways. stretch shoulders towards your back. rotate wrists
unfortunately performing will make things worse. a small relaxing beverage might help. I am just learning but use a capo when arm tired or stiff as upper frets are closer together and require less movement. playing sitting down is easier too.
cheers
the following i just my own opinion
levadopa is by far the best drug but only last short time and 3 won't cover 24 hours.
DAs are becing unfashionable because of OCD - perhap your neuro thought it not worth the risk. there are also lots of other side-effects. but a small dose might help guitar playing a bit????
maob inhibators might make the ldopa last longer but you might well not notice.
other drugs are rarely given or for later on.
i have 3 or 4 ldopa 100mg during the day and 200 slow release during the night. i am also on a low dose of DA.
guitar - try and time playing for an hour after pill. make sure pill is on empty stomch with large glass of water
try finger stretching, especially puling backwards and sideways. stretch shoulders towards your back. rotate wrists
unfortunately performing will make things worse. a small relaxing beverage might help. I am just learning but use a capo when arm tired or stiff as upper frets are closer together and require less movement. playing sitting down is easier too.
cheers
Hi Andy,
I am 66 and I was diagnosed just over 3 years ago, but I've had PD probably more like 7 years.
I was started on 16 mg of Requip XL then was put back to twelve and I'm now on 14 mg., and the only real problem has been swelling of ankles and legs, although I do get a bit fuzzy & light headed for an hour after taking them, which are extra problems on top of the freeze and balance problems which resulted in the PD diagnosis in the first place. I also take a low dosage of beta blockers for my tremor which is almost non existent whilst taking them.
Then the Doc added 125 Madopar 3 times daily, because my original symptoms were not getting any better. Not sure if these work, as I still have stiffness, freezing and balance problems, and walk with a stick.
I am changing from Requip to Mirapexin on the 19th. to see if they will help with the swollen ankles and lower legs, but the biggest help I have experienced lately is exercise.
I now go to the gym twice a week , plus a chair exercise class once a week and a hydrotherapy exercise session once a fortnight, which has reduced the ankle swelling on the days that I exercise, and has generally made me feel so much better overall, and brought back a bit of sharpness in thinking and speaking and I am told that I have gone back to starting conversations rather than just 'joining in'.
It has not however helped with freeze and balance problems, so I think my trusty stick is here to stay.
What I have started to do however, which I couldn't before I started the exercise regime, is get back to picking out a few tunes on my Strat plus, which I bought in 1997 and has only had about three hours use up to now. The dog might not like it but I think I'm doing ok?
Everyone is different, but I would recommend a chat with the Doc, regarding exercise - it might just help, it has been better than any drug for me.
Regards
Mike.
I am 66 and I was diagnosed just over 3 years ago, but I've had PD probably more like 7 years.
I was started on 16 mg of Requip XL then was put back to twelve and I'm now on 14 mg., and the only real problem has been swelling of ankles and legs, although I do get a bit fuzzy & light headed for an hour after taking them, which are extra problems on top of the freeze and balance problems which resulted in the PD diagnosis in the first place. I also take a low dosage of beta blockers for my tremor which is almost non existent whilst taking them.
Then the Doc added 125 Madopar 3 times daily, because my original symptoms were not getting any better. Not sure if these work, as I still have stiffness, freezing and balance problems, and walk with a stick.
I am changing from Requip to Mirapexin on the 19th. to see if they will help with the swollen ankles and lower legs, but the biggest help I have experienced lately is exercise.
I now go to the gym twice a week , plus a chair exercise class once a week and a hydrotherapy exercise session once a fortnight, which has reduced the ankle swelling on the days that I exercise, and has generally made me feel so much better overall, and brought back a bit of sharpness in thinking and speaking and I am told that I have gone back to starting conversations rather than just 'joining in'.
It has not however helped with freeze and balance problems, so I think my trusty stick is here to stay.
What I have started to do however, which I couldn't before I started the exercise regime, is get back to picking out a few tunes on my Strat plus, which I bought in 1997 and has only had about three hours use up to now. The dog might not like it but I think I'm doing ok?
Everyone is different, but I would recommend a chat with the Doc, regarding exercise - it might just help, it has been better than any drug for me.
Regards
Mike.
Can anyone tell me what is considered to be a lows dose of Sinemet/Madopar? I take 125mg Sinemet three times daily, is this a low dose. Sometimes feel as if more would be beneficial. I also take Requip 12mg a day.
Not due to see Consultant until Feb, and we do not have a PD nurse - so help from forum would be useful.
Not due to see Consultant until Feb, and we do not have a PD nurse - so help from forum would be useful.
this is from roche who make it
(a) Initial treatment.
The initial dosage schedule recommended is 1 capsule, tablet MADOPAR 125 or 125mg dispersible tablet three times daily. The daily dosage is then increased by 1 capsule, tablet MADOPAR 125 or 125mg dispersible tablet at weekly intervals until the individual therapeutic dosage is reached; when the patient can be followed very frequently the rate of dosage increase can be faster, e.g. twice a week. Thus the effective dose may be reached in as little as four days.
The effective dosage is generally between 4 and 8 capsules, tablets MADOPAR 125 or 125mg dispersible tablets daily, divided into three or four doses; it is rarely necessary to administer more than 10 capsules, tablets MADOPAR 125 or 125mg dispersible tablets daily.
(b) Maintenance treatment.
MADOPAR capsules or tablets can be used if the optimum therapeutic dosage amounts to more than 5 capsules or, tablets MADOPAR 125 or 125mg dispersible tablets daily, since it is advisable to divide the daily dosage into at least three doses.
The average maintenance dosage is 1 capsule or tablet MADOPAR three times daily, however, since the improvement may fluctuate, division of the daily dosage (regarding both the number of individual doses and their distribution through the day) must be adapted to individual requirements. If a patient begins to experience marked fluctuations in response in the course of the day (e.g. 'on-off' phenomena) the situation can often be noticeably improved by using MADOPAR 62.5, or, preferably by using MADOPAR HBS as recommended below.
it seem a bit contradictory to me. Slow release only count as 60% as much is wasted.
(a) Initial treatment.
The initial dosage schedule recommended is 1 capsule, tablet MADOPAR 125 or 125mg dispersible tablet three times daily. The daily dosage is then increased by 1 capsule, tablet MADOPAR 125 or 125mg dispersible tablet at weekly intervals until the individual therapeutic dosage is reached; when the patient can be followed very frequently the rate of dosage increase can be faster, e.g. twice a week. Thus the effective dose may be reached in as little as four days.
The effective dosage is generally between 4 and 8 capsules, tablets MADOPAR 125 or 125mg dispersible tablets daily, divided into three or four doses; it is rarely necessary to administer more than 10 capsules, tablets MADOPAR 125 or 125mg dispersible tablets daily.
(b) Maintenance treatment.
MADOPAR capsules or tablets can be used if the optimum therapeutic dosage amounts to more than 5 capsules or, tablets MADOPAR 125 or 125mg dispersible tablets daily, since it is advisable to divide the daily dosage into at least three doses.
The average maintenance dosage is 1 capsule or tablet MADOPAR three times daily, however, since the improvement may fluctuate, division of the daily dosage (regarding both the number of individual doses and their distribution through the day) must be adapted to individual requirements. If a patient begins to experience marked fluctuations in response in the course of the day (e.g. 'on-off' phenomena) the situation can often be noticeably improved by using MADOPAR 62.5, or, preferably by using MADOPAR HBS as recommended below.
it seem a bit contradictory to me. Slow release only count as 60% as much is wasted.
from merke who make sinemet for dupont
DOSAGE AND ADMINISTRATION
The optimum daily dosage of SINEMET must be determined by careful titration in each patient. SINEMET tablets are available in a 1:4 ratio of carbidopa to levodopa (SINEMET 25-100) as well as 1:10 ratio (SINEMET 25-250 and SINEMET 10-100). Tablets of the two ratios may be given separately or combined as needed to provide the optimum dosage.
Studies show that peripheral dopa decarboxylase is saturated by carbidopa at approximately 70 to 100 mg a day. Patients receiving less than this amount of carbidopa are more likely to experience nausea and vomiting. Usual Initial Dosage
Dosage is best initiated with one tablet of SINEMET 25-100 three times a day. This dosage schedule provides 75 mg of carbidopa per day. Dosage may be increased by one tablet every day or every other day, as necessary, until a dosage of eight tablets of SINEMET 25-100 a day is reached.
7
SINEMET® (carbidopa-levodopa) 9998301
If SINEMET 10-100 is used, dosage may be initiated with one tablet three or four times a day. However, this will not provide an adequate amount of carbidopa for many patients. Dosage may be increased by one tablet every day or every other day until a total of eight tablets (2 tablets q.i.d.) is reached.
DOSAGE AND ADMINISTRATION
The optimum daily dosage of SINEMET must be determined by careful titration in each patient. SINEMET tablets are available in a 1:4 ratio of carbidopa to levodopa (SINEMET 25-100) as well as 1:10 ratio (SINEMET 25-250 and SINEMET 10-100). Tablets of the two ratios may be given separately or combined as needed to provide the optimum dosage.
Studies show that peripheral dopa decarboxylase is saturated by carbidopa at approximately 70 to 100 mg a day. Patients receiving less than this amount of carbidopa are more likely to experience nausea and vomiting. Usual Initial Dosage
Dosage is best initiated with one tablet of SINEMET 25-100 three times a day. This dosage schedule provides 75 mg of carbidopa per day. Dosage may be increased by one tablet every day or every other day, as necessary, until a dosage of eight tablets of SINEMET 25-100 a day is reached.
7
SINEMET® (carbidopa-levodopa) 9998301
If SINEMET 10-100 is used, dosage may be initiated with one tablet three or four times a day. However, this will not provide an adequate amount of carbidopa for many patients. Dosage may be increased by one tablet every day or every other day until a total of eight tablets (2 tablets q.i.d.) is reached.
Well Ojalahey you have a lot of useful information in the reply posts, the bottom line seems to be that you are under dosed so I would see if you can have a phone call appointment with your Consultant, failing that ask your GP to assist you in contacting the Consultant sooner bearing in mind Feb is too long to wait. You should feel quite a lot better once your level is up a bit.
Just so you know who I am my husband has had PD for thirty years and our experience and that of our friends with PD is you know your body best so you will feel when drugs need adjusting after you have lived with pd for a while, don't forget the docs usually see people when they are quite well as everyone tries to be their best and fall about after and good luck
Wishing you well
vivian
Just so you know who I am my husband has had PD for thirty years and our experience and that of our friends with PD is you know your body best so you will feel when drugs need adjusting after you have lived with pd for a while, don't forget the docs usually see people when they are quite well as everyone tries to be their best and fall about after and good luck
Wishing you well
vivian
Hi sorry but I don t understand the difference between an effective dosage of between 4 and 8 tablets and an average maintenance dosage of 3 tablets. Isn't t an effective dosage the same as a maintenance dosage? And isn't 3 tablets considered a low dosage ie below average? I'm referring to 100/25 mg tabs . I am confused!
my point exactly - the manufacturer's recommendations don't make any sense.
but if you put them all together it seems to be that 3 x 100 ldopa is the usual starting point and 8 x 100 is the top of the effective range and low release count as 60mg. but I have heard of people taking a lot more, though probably with severe side effects. Nowadays dbs and late-stage DAs and anticholinergics would probably be tried instead.
but if you put them all together it seems to be that 3 x 100 ldopa is the usual starting point and 8 x 100 is the top of the effective range and low release count as 60mg. but I have heard of people taking a lot more, though probably with severe side effects. Nowadays dbs and late-stage DAs and anticholinergics would probably be tried instead.
Thank you turnip for clarifying , think I understand now.
Hi carolineb211
Ive been dx since last nov at stage two pd .im on mirapexin and. Feel worse than when I was not taking them.i haven't really been to sleep now for three weeks I stay downstairs so I don't disturb the wife.im up at five and try to do jobs round the house.im dropping of to sleep in the daytime without any warning so I don't drive and I can't walk far without feeling papain everywhere ,dizzynessf,loss of balanve plus a constant headache since April which could be the bells palsey. I've also got.'any ideas anyone cause I'm feeling very down at the moment.thanks johnh
Ive been dx since last nov at stage two pd .im on mirapexin and. Feel worse than when I was not taking them.i haven't really been to sleep now for three weeks I stay downstairs so I don't disturb the wife.im up at five and try to do jobs round the house.im dropping of to sleep in the daytime without any warning so I don't drive and I can't walk far without feeling papain everywhere ,dizzynessf,loss of balanve plus a constant headache since April which could be the bells palsey. I've also got.'any ideas anyone cause I'm feeling very down at the moment.thanks johnh
Hi potter64130 I would strongly advise you to go back to your consultant straight away. Mirapexin made me very ill too and you sound as though you should come off it. I wish you all the best
Samdog
Samdog
Thanks everybody for your responses.
It seems important to me to get the meds right..
I've asked my neuro for a second opinion... Running the risk
of alienating him...
ojala - andy
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It seems important to me to get the meds right..
I've asked my neuro for a second opinion... Running the risk
of alienating him...
ojala - andy
-----------------