Which medication?


#1

They say that all Parkinson's patients are different, no two are the same.  Well I guess as humans we are all different it's what makes us individuals.  I can't help but think that we suffer differently because we are all taking a different concoction of medications.
I just wonder what the results would be if the drugs were standardised for those who are newly diagnosed.  Reading posts here it seems that all are prescribed different concoctions for very similar 'onset' symptoms.  Do we all progress at different rates, or is it the medication we take and how we take it?  Are we taking medications to counteract the problems other medications are inducing?

ali


#2

My experience is as follows:

dx following DATscan June 2011

symptoms:  initially along with loss of smell, pain in left shoulder, initially thought to be frozen shoulder, later thought to be a torn rotator cuff, operation helped shoulder pain, but still left with little dexterity in left hand, left leg drag, no left arm swing.

initial medication:  selegiline.  effect on symptoms - nil.

medication review 2012:  sinemet plus 100/25 introduced slowly over a two week period up to 3 daily.  Azilect 1mg daily.  effect on symptoms - excellent.

medication review 2013 - no change needed

medication review 2014 - added another sinemet plus daily and introduced madopar dispersal if needed for emergencies.  Effect on symptoms - excellent, madopar on rare occasions when needed has been great.

im due a review shortly and see no need to alter the medications I take at the moment.  I know if I eat too much protein, take my meds too close to eating or I am stressed, then my medication isn't as effective and I end up like a statue, but I normally know it's my own fault.  I find if I do use madopar I have really vivid dreams that night.

would be interesting to compare experiences.

 


#3

 

Diagnosis last OCTOBER

Started with sinemet starting dose 62.5 x 3 daily

 increased 125 x 3 daily over 2 week periods but  Generic version less effective than starting dose..

Moved over too madopar  because generic ineffective.

3 x 62.5  4 times daily

1 x 125 madopar CR overnight ( deeper sleep soundly otherwise waking in pain)

1 x 30mg amitriptyline (too help sleep)

30 mg codiene 1-8 daily for pain

200 mg  x4 entacapone  too lengthen 'on times' along side Madopar (on trial)

I had and have vivid violent dreams 2-3 yrs before i was aware i was unwell, and i bite my tongue as well at various times, too be looked into at a next appointment with PD nurse.

 


#4

hi sea angler, how you finding entacapone also take four ,one along side my 125mg sinemet only been on them since sat morn working very well giving me more on on time the last three tablets ! gone from 20mins on on time to as much hour half think there going to add rasigeline as well, getting to used to sinemet


#5

 

I'm still waiting for them too be  ordered/issued Gus, a  Mega foul up,

The doctors surgery seems too be making the simple impossible.

e.g  I had run out of Madopar CR, i was told it would have too be ordered in, I could see it was on the Shelf behind her.

 

 


#6

went in to hospital as my walking all over place,gave me prescription on Friday night.so phone chemist up for entacaphone sat morning said they could get in monday ,phoned round 6-8 chemist & then tried asda and  they had half of them but asda i was surprised ! 


#7

Gus, that's encouraging improvement. Hope the duration will continue to increase. 

How is the cycling going?

S


#8

thanks still having teething problems with meds still trying to get more on time ! the bike been riding my mates bike all good so ordered one for my self too big ! sent back waiting for new one again ! not long now 14th september 2 wks turkey


#9

It will be great to go out on your own bike. Good to have a holiday to look forward to. Maybe you can hire a bike while you are away, if the local roads suit. Are you still planning to get a new puppy when you return?

S


#10

I was diagnosed beginning of June. Sinemet was instantly effective for the tremor which had been really bad.What do people think about coffee consumption? I`ve always loved coffee, gave it up for a while before diagnosis because it made the tremor worse. I`m now drinking it again because I love it but wonder about the effect on symptoms.

All the best


#11

Thanks SA and frances, looks like we are on a similar journey.  Frances, I loved coffee too but I have found I can't face it first thing in the morning now, later in the day I still enjoy a nice strong cuppa, and I actually find it helps my sinemet jump into action if it's having a 'lazy' moment.


#12

yes indeed the puppy is still coming .supa cant live without a dog house feels so empty still wont be the same as ebony tho .


#13

I was diagnosed just 5 weeks ago and was put on madopar 125g 3 daily. I really didn't know what to expect from the medication as nothing was explained to me. However, I saw my GP yesterday and she said she could see a massive improvement in my overall appearance and mobility so maybe the medication is doing what it is meant to do. I will see the neuro again in October and I should imagine I will have lots of questions by then.

By the way Ali, I was a huge coffee fan  but a few years ago I got duodenal ulcers and had to give up the coffee. I found this very difficult so the GP suggested I convert to decaf. I still get my daily fix and to be honest I am so used to the decaf now that I can't really tell the difference.

Good luck with everything 


#14

I switched to tea first thing    also, but am enjoying coffee again. I read that coffee can help to get you going---anyway, in spite of the horrible diagnosis it`s nice that coffee is part of my life again.

Another busy day with the grandchildren as it`s still school holidays. I am so glad I can still do this!

Frances


#15

Morning,

great to hear the madopar seem to be doing their job scooby, Especially when others notice......I remember when I first started sinemet, it felt so good.  Hope all goes well with you're neuro, know what you mean regarding questions, I find noting mine down when they come to mind helps or I go into my appt and my mind goes blank lol.

frances, I became a granny for first time in March.  I am delighted that I am still fit enough to look after her occasionally and have lots of cuddles and giggles together.

have a good day 

Ali 


#16

Hi I'm martin i was diagnose 6 years ago, I'm new to this forum thing,I've been looking at the list of drugs mine don't seem to be on the list. I'm on co-beneldopa is this just a different  name, i have recently  move from Bournemouth  to essex and don't have a specilist or nurse  and having to rely  on my GP ,Who seems to be out of his depth , can anany one shead any light on this drug .

I apologise for the typing hands not on my side this time at nighnight. 


#17

Hi Martinfish and welcome!

I cannot believe that this is the best provision that the NHS can offer you!

Were you diagnosed by a neurologist?

Your meds are a generic form of Madopar, a common Parkinsons drug.

Please ring the helpline...see top of page for phone no...and see what advice they can offer.

At the very least they will know if there is a Parkinson's nurse for your area and give you contact details for a local support group.

You do not have to accept this poor care and the forum is always here to offer support and answer questions.

Keep in touch.

Love

GG

 

 


#18

Hi Martin

I think co-beneldopa is simply another name for Madopar, one of the commonly prescribed dopamine replacement drugs prescribed to relieve Parkinsons symptoms. Surprised your GP doesn't know this. You could talk to the Parkinsons UK Nurse on the helpline here if you need more support. They are very helpful.

S


#19

Thanks for your replies,  i had a nasty fall last night resulting a cracked rib, but ever cloud has a silver lining I got to see a new doctor who was as shocked as some of you I didnt have a specilist  and has set the ball rolling to sort it out. Many thanks for your kind words  martin