Advice on medication


#1

Hi all, 

I'm on 8mg Ropinerol. I've taken to it well (I know some people have issues with it). 

My problem now is that my right hand is alot stiffer the last 6 weeks. I do exercises every day on it. Take supplements. 

I'm seeing PD nurse next week and wondered should I increase dosage or add something else? I'm loathe to start levadopa but maybe I need to bite the bullet. 

Any insight would help so I can go to appmt with information. 


#2

I just lost a lengthy reply to you detailing our journey with Ropinirole/Requip over 20 years.

So, I just suggest that you read all threads on the forum about dopamine agonists.


#3

Thx Benji, 

Have just read over some former posts on others med journeys. I ll discuss with nurse too. I'm not keen to increase Ropinerol but think I need to tweak meds in some way. 

Thank you for your reply. 


#4

Hi, I'm new here.  Wasn't able to post a new topic, so am hijacking this thread, sorry!
My 80 year old mother has had Parkinsons for about 5 years.  Her medication has been gradually increased from Madopar, to Rotigotine patches.  She was doing okay on 4mg Rotigotine until she started getting skin irritation under the patch sites.  Consultant changed her to Ropinirole which was awful for her, for 2 weeks; very confused and when she wasn't confused, her physical symptoms were much worse.  She went back to 4mg Rotigotine but her physical symptoms didn't improve back to former level.  She was put on 6mg Rotigotine but nightime hallucinations have been steadily worsening to the point of  being too upsetting for her.  Consultant has put her back to 4mg Rotigotine and told us to wait 2 weeks before contacting him again, to give "it time to settle".  But her physical symptoms are worsening considerably.  The immobility is worsening, she can hardly move.  She is on 4mg Rotigotine, 100mg Madopar 5 times a day, and 1 sustained release Madopar.
We are both despairing.  Is there no other medications she could be tried on?  I see the names of lots of other drugs online but the consultant is giving the impression that there is nothing more we can try.  Would really appreciate some input from others please.  Thank you.


#5

Hi Harebell,

I am a bit younger than your mum (76)but have been diagnosed for over 5 years.

Like your mum I am on Madopar and also coming off Rotitogine. I was on 6mg of rotitogine  now  down to 2mg and think I will be off it completely in afew days.

I take a much higher dose of madopar than your mum,I take 125 and 62 .5 together 4 times a day and at night I take2  Controlled Release madopar of 125 before going to sleep  (hopefully),First thing in the morning I take a dispersible Madopar 62.5 This makes a total of madopar of 850 madopar and of benseraside 212.5..The only other thing I take is selegiline 5mg.

Perhaps I have been very lucky but have never had hallucinations (so far) nor freezing.

My mobility is not as good as it was when I took 6mg of rotitogine. I dont so far have a tremor.

I go to see my specialist in 2 months will let you know if he changes this medication.

Hope this  may help 

.Best Wishes Anne


#6

Hi Harebell,

    

Some neurologists give up too quickly. I realise several neurological conditions are hard to treat, and the drugs are only effective for a short period Very disheartening for any medic....It would not have been my choice.They have a thankless task, no glamour,  low status   ( compare Surgeons )

When it comes to the choice of what to give the patient, well,  every consultant seems to have certain preferences. A Parkinson nurse told me she could recognise which consultant treated a particular  patient from the list of drugs the patient had been prescribed. 

However, even though this disease has been around for a while, you can not but wonder why after so much effort, time and money (look at the amount the PDS has poured into trying to find a cure)  has been put into research  the most effective treatment,, the one and only LEVODOPA (available in three main products,:(Sinemet,  (Stalevo=Sinemet + Entacapone)  and Madopar) has now been around for over half a century.  When I was diagnosed in 1999  I got the impression that drugwise Parkinson patients were in for a much smoother ride thanks to some relatively new drugs,  the more sophisticated newer dopamine agoniists : Mirapexin , Ropinirole and Rotigotine .All these drugs can have nasty side effects,, which can limit their use.

More was and is still in the pipeline, but it looks like  DBS surgery is the most impressive (if it is successful) improvement in the treatment of PD. Not every patient is suitable for this treatment..

So Harebell I am afraid your long  list  on the internet of drugs for PD is very much a list of "more of the same". It boils down to trial and error,not all drugs give the same benefit to the same patient, some patients seem to do better on Madopar, some on Sinemet, Start with a low dose , try small amounts maybe  in combination with other drugs in small  doses , be patient and grateful for any improvements , Being well  rested, relaxed , no stress,  is very helpful. I found yoga very good for this in the early years. All the best, Kate


#7

Thank you very much for your replies Anne and Kate.
Interesting that you are on much higher doses of Madopar Anne.  We were wondering if Mum's Madopar couldn't be increased.  Why are you coming off Rotigotine?
Kate, so Mirapexin might be worth a try?  Is it slightly different from Rotigotien and Ropinirole?  Anne mentioned Selegeline; is that another one?

Another question if you don't mind.  Now that Mum has reduced to 4 mg rotigotine, is her mobility likely to improve again with time or is it going to be stuck at the current level, which isn't good at all?  As I said, the consultant told us to give it two weeks before we contacted him again, and I hoped he wasn't just fobbing us off.


#8

Harebell.

Maybe some of your Mum's symptoms are age related and not just due to Parkinsons.Maybe also due to changing medication so often?

Madopar, as been already said, is the only drug that can alleviate symptoms for a while but not for ever!

So, why not up the dose to make life a little better for her now and find the best possible dosage which works for her and stop trying all and everything.Quality of life for the next few years is better than changing a drug regime that may make the situation worse.

OH is now on 812.5 Madopar a day and soon to be increased again to 887.5. After almost 20 years since diagnosis at aged 47 there is not much more leeway on increased dosage. We have to accept the inevitable but in OH's case it is not age related, just Parkinsons. I wish he had been 75 when diagnosed, preferably not at all, but that's life.


#9

Hi Harebell

I am coming off Rotitogine as I was showing signs of compulsive /impulsive behaviour (on tablet a lot and buying things and once was rather confused )so decided to come off it discussed with the specialist I am under.

Selegiline is supposed to help levodopa work better I am on such a low dose can't say if it helps or not I believe you can increase madopar up to 1000mg per day but everyone is different.

Hope this may help you, all the best Anne 


#10

Having tried all the different medications I am on 4 x 250mg(1000mg) of Madopar per day which does seem to help.  


#11

Thank you all once again for your helpful replies.

It looks like there might be scope to increase the Madopar, and until now it has worked pretty well for her.  But I was concerned it would worsen the hallucinations.  Does Madopar cause hallucinations, do you know?

Anne, Selegeline sounds interesting, will try to mention that to the consultant.  Sorry to hear about the impulsive behaviour issue.  They keep asking us about that but that hasn't been an issue with Mum so far.  Hope the reduction in rotigotine works out alright for you.

Benji, yes there has been too much chopping and changing medication recently, as you say.  I wish to goodness we hadn't changed from the rotigotien patches initially but she was getting the skin irritation and her morning carers were making a fuss about it.  As it turns out, it would have been by far the lesser evil.  She is still getting it a bit but it has settled down. 
She is getting signs of dementia too, but whether that is age or PD, I don't know.  She's just had an MRI and we're waiting on the result.
I know they don't want to put up the dosage too soon so there is scope to increase it later.  So sorry to hear that your OH got it so young.  It is such a cruel disease.  I have ME which can be pretty miserable, but Parkinsons is a nasty and cruel condition. 
Best wishes to you all too.
 


#12

I have been on Madopar for a very long time and so far have had no side effects.  The only side effects are of the Parkinsons kind which in my case are memory loss and occasional loss of balance.


#13

Yes, difficult ot know what are side effects and what are actual symptoms.  I think Mum was fine on Madopar, and the side effects started with the Rotigotine.  All so tricky.


#14

We have also given up on Selegiline as it made no difference to increasing the longevity of Madopar, which is what we had been told it would.

Now, reluctantly uping the Madopar dosage.  Frankly, it's all very hit and miss, and  guess work, even with a  good neurologist.


#15

Harebell,

Your Mum is 80, give her the best quality of life for however long, even if that means increasing the Madopar. Why wait until her symptoms worsen to do this? To put it bluntly, she may not be around long enough for you try any more modifications of her meds.So, get her what is needed to  sustain the life that she has now, for as long as possible.

I can  understand waiting to increase Madopar if you are younger, as we have done,BUT, at 80 years of age, surely quality of life, for what remains of her life, is better  than all the changes of meds, adjustments of dosage etc.and al the problems that that may  entail.

We have kept to Madopar for almost 20 years , Requip was precribed  at first diagnosis, soon up to 24 mg/day after 18 months, and it has taken the last 3 years, and many attempts, to fully dump this drug, once and for all, and that was just getting down form 12mg/day to nil very recently.


#16

Yes, sadly it's very true what you say Benji.  I just hope that upping the Madopar will do the trick, just to get her back to where she was before.  She is currently barely able to move and it's obviously gettng her down.  She gets an occasional window of an hour or so where she can move a little.
Why did you stop Requip?
Is Selegeline worth trying (I know you say it hasn't worked for you) or does it have side-effects?
When people state what dosage of Madopar they are on, how do they measure it?  Mum takes 5 of the 100mg/25mg Madopar capsules.  So would you call that 500mg or 625mg?


#17

Hi Harebell,

Have been reading these posts and for what it's worth, here's my suggestion.  You say your Mum is on Madopar already, which is good. If it was me, I'd gradually reduce the Rotigotine to zero and instead, add Entacapone, which lengthens the working time of the Madopar. I'd also add Selegiline, 10mg. first thing in the morning. Does your Mum take her meds. an hour before, or an hour and a half after food? Meds have more effect when taken on an empty stomach. I would speak to her neurologist or Parkinson's nurse first though. She may not see improvements straight away, as it can take a little time for these to work, but hopefully in a month or two, she might feel better. Your Mum deserves the best quality of life she can get for her remaining years. 

As I said.......just my opinion. All the best.

Twinks.


#18

Harebell.

We stopped Selegeline as it did not help the Madopar dose to last longer.

Reqip stopped on neurologists advice as, after so many years, it was not doing what it was intended for as there are not many dopamine cells left for it to work on to produce dopamine. Additionally it carries the risk of compulsive behaviours.Thankfully we did not have the gambling or sexual ones but there was defnitely OCD.

I was told by the P nurse that it's 500mg of the active ingredient in the dose you ask about.


#19

Benji, Selegiline enhances the effect of Levodopa. It's not used to make the dose last longer........that's what the Entacapone is added for.

Twinks.


#20

Hi Twinks.

Last longer or enhance? I'm not sure what the difference is.

Maybe I should have used, 'more effective.' Anway, it didn't help.