Madopar


#1

Is it normal to see little to no affect after a week? 

I am still on a low starting dose 50mg x 2 atm.

Trev.


#2

 

Hi Trev - I'm not on Madopar so I can't tell you, but having said that I was prescribed Ropinirole XL slow release, started on 2mg at first and they took effect within 3 days. Perhaps you need the mgs increased but slowly at first so your body adapts to them. Speak to your Parkinson Nurse for advice or phone ou could phone the helpline and speak to a nurse on there to give you advice

Regards Sheila


#3

Hi trev - I am also on same dosage as you but now three times a day which seems to have made a difference.

i suppose everyone is different but see how you get on. 

All the best

sue


#4

Not sure why my post has come up so many times!!!! Admin can you delete some if poss please

sue


#5

Hi all,

Am now on 3 a day but not feeling much improvement although I do feel less tired.

How long can it take for the meds to take effect been on them less than 3 weeks.

Trev


#6

^Anyone?


#7

H Trev,,

Like you I started on 62 5 Madopar twice daily,after two weeks it was increased to three times a day.After being on this dose for 4 days I was able to get up from a chair easily.

This was 4 years ago ,I am now on quite a high dose of Madopar with no side effects.It has been great.

My pd specialist suggested  I reduced tbe madopar slightly and  start on rotigotine ,this was 6 weeks ago and so far no problems.Hope this helps.

Cheers  Anne

I


#8

Thanks for the reply anne,

It does feel like my walking has improved and my general feeling but the dystonia in my hand hasn't improved neither has the ability the straighten my arm... My balance is fine and so is my ability to standup.

Am hoping  that once they increase the dosage those symptoms will improve.

Is dystonia a tougher but to crack?

Trev


#9


Hi Trev ....i have been taking Madopar for approx 3 years. I started originally just on Requip XL in the evenings (slow release Ropinerole) Then a small dose of Madopar was added and it  was like magic, i felt much less tired, in fact i had loads of energy, positive, and like my old self again. over time i needed more and am now taking 600 mgs a day spread out in 5 doses plus the Requip xL 10mgs at night. I was feeling as though my meds were wearing off too fast and so i have been very fortunate to be referred to a Parkinson Specialist at a hospital 20 miles away who has fitted me with a PKG monitor, it records when i take my meds and my movement throughout the day and night. I have to post it back this monday after wearing it for 6 days and the graph will be read on a computer which is extremely detailed and from there the consultant will know if my meds need altering.  She has told me that because of my age 63 that she would not be prepared to give me more Madopar because of the long term side effects, instead if needed i will be prescribed another drug that will stop the "wearing off" happening so quickly. As i say i have felt great on Madopar and wish i could have stayed feeling like that always. Before the meds i also had awful pain in the shoulders and neck, stiffness and it turned into a frozen shoulder for which i had an op called an MUA to loosen it up, it worked and although i have approx 80% more movement....over the last few years i still sometimes have the" coathanger" syndrome. I lost my sense of smell, dragged my right leg, tremors and spasms in my right hand and arm, terrible restless legs and heavy woozy heads. I call it Miraculous Madopar and i hope that  you will get the same benefit from it that i have. All good wishes to you...keep posting and keeeeeeeeeep smiling...very important!!

Cheers Dolly


#10

Thanks for the reply Dolly much appricated.

Has anyone started on Madopar 50/12.5 and not felt any/much benefit till the meds were increased? Or it did not help and switched meds?

I have been on my meds 3 weeks 4 days (1 week 4 days at 3x a day) and felt a slight improvement to my walking and feeling more enigetic, but it hasn't improved my hand/arm problems.

Any reply is muchly appreciated.

Thanks Trev.


#11

 

3X62.5 Would just be like my evening dose Trevor imagine if i took nothing at all until the following evening, I would feel 'off'  for a lengthy amount of time, those 3 pills cover me for 4 hr's, i would still have 20 hours, my body and mind would be craving the next dose, without it i may not be able too function in regards to fine finger/hand/arm movement or ability or stamina,I would be lacking the levodopa dopamine stimulation, much like a flat battery.


Your situation is that it needs monitoring, adjusting, until you reach the peak of what your body require's much like mixing the ingredients of a cake until its just right for You my friend and for the now. if that is not the case, with time because time to do it correctly rather than a massive dose it needs time in months rather than weeks perhaps, then do say to those treating you, but do give it the benefit of time, there are others pills like 'sinemet' which is also the gold standard but they would also 'build' that dose too. other pills/treatments may be added to be beneficial the core of what you are taking.

I see my Parkinsons nurse on a regular basis, But I am 7 months overdue seeing the Neuro, My PD nurse is the back bone of my care, Everything does take time :) chin up .


#12

Thanks for the reply Sea Angler,

I understand what you mean and guess patience is key.

You take more on a night dose than what I take during the day (50mg every 6 hrs 3 times a day) that has showed me my starting dose is really low.

Did you start on a low dose and it needing increased due to it not being very effective?

Trev.


#13

 


Yes i too started on a low dose just the same, it wasn't that it was ineffective, it was I hadn't reached the dose My brain and body required, we are of course each Unique, others might not be on much more than you are now, and some require more.

That correct level when reached might stand  Good, for several years which ever Pill it may be or treatment, I am pretty happy where I am now and have been for some time. others may well tell you the same.


#14

Ah right Sea Angler so the lower dose just didn't cut the mustard for what your brain/body needed but did you seen/feel any improvement on the lower dose or was it not till you increased the dose that you seen better results?

I understand that everycase of PD is different especially the reaction to the meds but was just hopeful the lower dose would have done the job.

Trev.


#15

 


 I did feel improvement Trev But at the same time I also knew it wasn't a instant fix I didn't expect it to be and that the dose would need to be built up.  Have you had much contact with Neuro/PD nurse since diagnosis? Perhaps you have un answered questions?. i get the feeling your mind hasnt been put too rest on your medication perhaps?.


#16

Hi Sea Angler,

How long till you noticed a notable improvement?

No contact yet still waiting on my letter from my PD nurse for my first appointment, my next appointment for my Neuro is the middle of July.

Yeah I feel in limbo atm since my diagnosis not sure what to expect with the medication as the neuro just wrote me a script and said these will help with the muscle tightness in my hand/arm said that I should be able to get back to work in 6/12 months and mentioned a genetic blood test then sent me on my way.

So atm I am digging/searching for anything I can find out about the meds and how long till I notice an improvement.

Trev.


#17

Hi Trev12345,

I'm sorry to read you feel in limbo at the moment.

Just to let you know, you're more than welcome to give our helpline a ring on 0808 800 0303 (Monday-Friday: 9am-7pm, Saturday: 10am-2pm), so you can discuss your medication with our Parkinson's nurses.

Best wishes,

Ilona (Moderation Team).

 


#18

 

It's the impossible Question Trevor I will just be repeating myself in saying the Only way too find out is "as the dose is increased and that is done over time". I Cant say double your pills and double the time in weeks and that will be the point, because it is Unique too you.

Just the same as i cant say 'you should be able to return to work in 6/12 months'.

I haven't.

 

 

 

 


#19

Yeah Sea Angler I understand what your saying in that every PD case is unique to that person and that some people need higher doses to hit that sweet spot.

All I was wondering is how long you/anyone else took to find that sweet spot of medication and whether they needed an increase in meds to see an improvement as the starting dose just didn't cut it.

At the moment I am trying to gather peoples experience's with medication to garner a timeframe I may start to feel a bigger improvement. 

Sorry if it comes across that I am not listening to what your saying I am taking everything on board.

I think also I am still coming to terms with my diagnosis and was hoping the medication would be a quick fix for all of my symptoms but it seems I was incorrect.

Trev.

 


#20

 

It's not that i don't think you are listening Trev, it's that it would be wrong of me to predict when all your symptoms would improve for you to a standard that meets your expectations in terms of time & dose, or a figure that would allow you a return to work

1 x 62.5 at 6 hr intervals is very low if you took for example at 6 am 12 noon 6pm, I wouldn't expect a dose too last 6 hr's its effectiveness that you might feel from it perhaps might be 2-3 hr's in those 6 hrs and that's is dependent on different variables such as what you happen to be doing, physical effort, the fatigue you feel from it,stress, diet. ect.

When i started my timing was prob 9 am 12pm  6pm So i prob felt some or slight effectiveness from it between 10 am and 2pm from the single pill dose i was on at that time.