Anyone else taking this cocktail


#1

Diagnosed in 2010 and started taking Ropinirole progressing over the next four years to the maximum licenced dose of 24mg per day. Added to this was 1mg per day of azilect.

Late on last year with everything going downhill my consultant put me on levodopa and things have improved, he has however left me taking the existing drugs.

does anyone else take this mix, do you have any problems doing so.

My gut feeling is that this is not the best approach but i need to build my case before I see consultant in April.


#2

Hi Drifflad

I am no doctor but to be on the maximum licensed dose of Ropinirole and have added Levadopa within 4 years of diagnosis sounds very odd to me.

Dose-related impulse control disorders such as Hypersexuality and gambling are very likely at such a high dose of DAs and as doses need adjusting upwards as the disease progresses it would seem the neuro isn't leaving much room for future increases.

When you say things were going downhill, do you mean physically?

If so there are alternative courses of action to consider such as DBS and the Duodopa pump...

I wonder if you could ring your Parkinsons Nurse or the helpline for advice?

My husband was the victim of an overprescribing consultant neuro so maybe I am over-cautios but I wouldn't like to see anyone else come to harm.

Take advice and stay safe.

Love

GG


#3

hi im on 18mg requip and 125 sinemet three times a day adding slow release at night . only diagnosed 7 mths ago . think i had  it for while but missed , told by consultant need base line of sinemet then add in other drugs to make it work better .sounds like what your drs are doing .

 

 


#4

I am really surprised to read that patients are on such high doses of drugs so soon after being diagnosed.There are a number of causes of concern..

I had understood that these drugs need to be introduced carefully with small increases until the desired dose is achieved.

Many doctors are now very cautious of prescribing DAs over 18mg a day because of the OCD side effects being dose-related.

As the condition progresses over the years an increase in dose is necessary to maintain symptom control.

I repeat I am no doctor but this prescription of high doses of  powerful drugs particularly in someone diagnosed 7 months ago seems unusual and potentially harmful.I would seek a second opinion if my partner was being prescribed such high doses.

GG

 


#5

Thanks you all for your support and advice.

i have decided to take the bull by the horns and ask the neuro to explain the thinking behind this and answer the question what does each drug contribute to my treatment.


#6

Hi increasing meds as not getting symptom control . Once get there then will stay on that dose . . Need to be able to live now . All changes done with full explanation and agreement . Made fully aware of side effects and being kept close watch . Think I've had pd for maybe 10 yrs so in that scheme of thinks not quick increase getting upto point where I should have been .


#7

Hi drifflad & GG

But I was dx <three years ago, and I'm on the max (pretty nearly) of Pramipexole (a DA) plus Azilect . . . and four months ago we added a small dose of levodopa. And I don’t believe my progression is thought to be particularly swift. Like you two, I'm not a doctor but I hope that gives you heart, driff.

I’ve heard elsewhere a tendency to add new meds but never subtract existing meds - but my PD nurse was certain she wanted to continue with my existing meds.

Very best
Semele


#8

We can only offer our own experience and hope it helps others.

My husband was treated by a highly regarded consultant neuro privately and was on the maximum dose of DAs within a few years of diagnosis.

He  was on 50% more than the licensed max within 6 years.

4 years later our life was in ruins resulting from the secret life of OCDs.

Long months of treatment under the care of a new neuro saw him painfully withdraw from the DAs completely and move onto Levadopa.

Now, 4 years later his Parkinsons is controlled better than ever but his problems caused by his past drug-fuelled behaviour continue to ruin our life.

His new neuro tells us that the progression of his Parkinsons is very slow and he can see no reason for the huge over-medication in the early years.

If you feel well on the drugs you are taking and are sure you are well-monitored for side effects, and feel that there is room to increase the drugs as the condition progresses, all is well.

I just feel that is important not to follow the doctor's advice without acquiring all the info....and asking questions.

They don't always get it right.....as many past posts on the forum prove.

GG

 

 


#9

Hi driff,

When I was first diagnosed my consultant started me on Sinemet once a day, that lasted the whole day, well about 8 hrs, then as time went by they started wearing off a lot quicker, until I was taking them every 3 hrs. When I told my consultant he changed it to sinemet plus, which really didn't agree with me, my whole body was fidgety all the time, things would fly out of my hand and across the room, my feet constantly jiggled, consultant said I had been overdosing on the meds, I was then put on Stalevo, which I have been on for probably the last 5 years, since then I have added Madapar in the morning and now Ropinerole has also been added too, as I was and still am having more down time, (tablets wearing off) which I get on an every day basis now.


#10

Let's hope the new drug, Rytary, is soon available in the UK...as it is in America.

It will mean less off time as it is slow release and will cut the number of daily doses.

GG


#11

Hi Driff

I was diagnosed in 2003 at which point my right side was useless.

I was put on mirapexin titrated up to 2.1mg, six months later this was increased to 3.14mg (maximum dose) and selegeline added.

Over the next 2 years the mirapexin dosage was increased to 8.4mg; at the time it was stated on the drug leaflet  that it was safe to do so if under the care of a neurologist.

Pro rata the dose of mirapexin and you are looking at an equivalent of  65 mg of ropinerol.

In 2006 no more mirapexin but sinemet was added which made a massive difference to movement and I remained on the high dose of mirapexin as well with no change in meds for 2 years.

Behaviour changes occurred from the beginning with mirapexin but did not interfere with my lifestyle until 2006.  In my opinion anyone taking dopamine agonists will have their behaviour affected, this can range from very minor addictions or impulses that dont impact on lifestyle to much more serious behaviours like extreme hypersexuality or compulsive gambling.  Its very subjective as to what is deemed a problem but I know of several people who had life disrupting problems on 8 mg of ropinerol.

The point is you need to monitor yourself and be monitored by others and any change however minor should be brought up at clinic; if its impacting on your life I would advise dont wait for a clinic contact your neuro, pd nurse or gp immediately.

DAs are useful as they help combat muscle pain and depression. They are also a swine to get off and can cause irritability like restless legs if reduced.

NEVER come off DAs (or any drug ) without knowledge of your neuro as a sudden halt can cause a condition called NMS which can kill you!!!!

So DAs and Levadopa are commonly used together as they do have different benefits.

DAs were originally prescribed as a stopgap before levadopa therapy and 2 to 5 years is their  expected time before levadopa is required.

Nowadays due to the fear of behaviour problems there is a tendency to avoid DAs altogether or even bring them into play after levodopa has been established.

Levodopa being more effective than any DA you will probably be better off without the risks associated with DAs.

The problem is that levodopa is percieved as having a 10 to 15 year life before a side effect called dyskinesia occurs. The tendency now is to use a drug called entacapone to boost the levodopa and thus extend the life of the levadopa.

Having taken levodopa since 2006 and having no dyskinesia i have compared my drug regime with those I know who suffer from this side effect The people I know who have the problem are taking single doses in excess of 150mg levodopa ie 1and 1/2 sinemet or smaller doses spread out but with entacapone added to each dose eg  2 sinemet plus  (200mg) x 3 per day or 1 sinemet plus x 6 per day but with entacapone added to each dose.

Decreasing the dose reduces the dyskinesia.

I mentioned this to my PD nurse who told me they dont measure the single dose just the total dose taken by a pwp with dyskinesia.

Hope this helps 

 

Leyther


#12

I completely agree with all Leyther's points.

If neuros now largely steer clear of DAs because of likely behavioural side effects, why are the 3 neuros treating the above posters prescribing large amounts of DAs to recently diagnosed PWP?

There seem to be a number of unenlightened neuros in the system who may be ignorant of the risks and putting patients at risk.

How do we ensure that all neuros exercise caution?

GG

 


#13

I started to squirm a bit as soon n as I started taking one and a half tabs of Sinemet plus at one time and since I stopped having read a previous post of Leyther's just the occasional hint of dyskinesia.  I am also on 4 mg neupro patches and 4 sinemet plus a day.  Next step if more med.required is five sinemet a day, i.e. more often .  I saw the neuro a couple of weeks ago and waited in vain for any mention of ocd's although it was "in the air".  I saw him glance at the PD nurse's letter from six months ago  where she claimed to have been proactive in highlighting these side effects whereas she mostly  nodded in response to my comments on the subject.  They seem to shy away from the subject.     Can these medics really be the shrinking virgins that I can only conclude they are?       


#14

Hi Eileen

I recall that 150mg levodopa was your threshold, I would put that down to you being quite petite.   I once asked a trainee neuro if body mass had any bearing on drug effects, her immediate reaction was yes but she then consulted the main man and he said yes but it depends etc.

GG

Wouldn't it be great if we had consistency of treatment  across the country?

It would be even better if we had an explanation of timings, the effects of sleep or lack of, fatigue, food etc. were  given to the patient.

I find my PD to be quite easy to manage, I expect to have some wearing off each day and I expect to have good days and bad; dont seek perfection.

The difference may be that If I do wear off I can generally find a reason and I dont react by assuming its progression of pd like I did in  earlier times hence 2 years no increase in medication.

A lot of good advice taken from  many of this forums members could be useful  to neuros,                                                                                                                                                                     

L


#15

17 years ago on diagnosis my OH was immediately put on Requip, and, over 18 months, was on 24mg per day. We knew no better at the time and took the advice of a so called  expert who we soon ditched after I  had done some research on the  drug.

Over the years, and now under a different consultant,  he managed to get down to 12mg per day with little side effects, BUT getting down by just 1mg, to 11mg per day, with many attempts over the last year has proved impossible.

He does not have the gambling and sexual OCD's that this drug often initiates BUT he does have other OCD behaviours.

 


#16

Hi GG, and others,

You are right, Goldengirl, to be concerned about the high doses of DA still being prescribed , but let's hope the patient and their carer are nowadays warned to look out for the possible devastating side effects. Not everyone got theO/ ICDs, even in the early days when these drugs were new and the maximum recommended  dose was higher than  now . The manufacturers are now ,of course, concerned there'll be more punishing pay-outs as has happened after a few court cases. I was on 6 mg Mirapexin for a while and no problems, but once Levodopa medication (Sinemet) was added , I lowered the Mirapexin very gradually !. It is recommended to lower the dose of DAs once you add levodopa, and vice versa (like when  starting on levodopa and then adding a DA later, you lower the levodopa or when changing from a levodopa drug  to Stalevo you initially lower the total daily levodopa content), I read this somewhere.The consultant should be able to tell you the how and why. In the 15+ years since diagnosis I have read a lot of articles on authoritative websites (pubmed, medscape, uspharmacist, etc) about medication for all stages of PD. Opinions differ occasionally, certainly over time (and based on experiences and feedback from patients ) there are changes in the best treatment recommendations for the different stages of PD. Also keep in mind the speed of progression is different for everybody, so you cannot say  someone is over prescribed purely by reading their list of daily , but not knowing the person's circumstances and state of health, although I must confess sometimes the  "go low, go slow" mantra springs to mind and I wonder if the consultant has forgotten this. Patient's weight certainly plays a role, I gained a lot of weight on Mirapexin, maybe that helped me  to tolerate the high dose of 6mg/day, but now, taking Sinemet every  2 to 3 hours, I  take only 2mg/day of Mirapexin .I too am hoping for a speedy European decision on Rytary..as Entacapone did not agree with me. As I see it Stalevo or Sinemet + Entacapone does the same thing as Rytary :  it increases" on" time.

Like Leyther ,I too get the impression, that on the whole the enthusiasm for the DAs has waned somewhat, even for the younger patient. When the dyskinesias will strike, no-one knows, some get it after 3-5 years , they are unlucky . I certainly think that it could help if you kept the levodopa portions evenly spread out over the day . 

Asking questions and getting hold of as much information as possible is vital with this complicated disease. They say PD is very sensitive to the Placebo effect, which makes me think that believing in the right decisions my consultant makes, understanding these decisions, will enhance the efficacy of the drugs. 

 Kate, with apologies for being longwinded.


#17

A very helpful contribution, Kate. I agree that the enthusiasm for DAs has waned but it seems a few neuros are not as cautious and taking risks.

They have little to fear as there have been few successful legal challenges in Britain, unlike America or Australia.

Rytary will offer a much improved drug delivery, I am sure.

As I understand it, within the one pill are hundreds of little beads all formulated to dissolve at intervals ensuring the level of Levadopa remains constant.

This will be great after the roulette of hoping the Sinemet can get through the stomach contents and make its way to the small intestine and stay there long enough to be absorbed!

I agree that trusting the consultant enhances the placebo effect, but when the trust is misplaced, the consequences can be disastrous.

So the info gathering and questioning is vital to keep us all safe.

Love

GG


#18

Hi all, some very interesting views here which has hardend my resolve to ask questions of my neuro.

Its not a question of not trusting him but more that his attitude is one of detachment maybe he is frustrated that he cannot offer a cure but I feel he is just ticking boxes well time will tell and after all the support I've had on here i'll be sure to post the outcome.

Take care everyone.

DL.


#19

Hi Kate

I specifically asked my neuro about adjusting the mirapexin dose in conjunction with sinemet.  His reply was not to adjust as it would keep on working in the background and to be fair it did.

Behaviour problems or BPs I think would be a better term as  the changing fashion for terminology OCD ICD etc are covered along with risk taking and novelty seeking (constant need for new experiences).  Always  remember its not what you do its the way you do it and your personal circumstances that will dictate if it is a  problem. Awareness  means reading and understanding all your drugs and their interactions.

Oh and lying becomes common to both to cover  any misdemeanours and for the thrill of it,

I would say that there are two general types of pwp:

Those that realise they have a problem and its not something that the medical profession can easily deal with and those  that dont.

A third and fourth type then emerge; those who set out to find help  and those that dont.

The medical profession  arent always at fault; the technology ist easily availablr to measure dopamine levels. 

Rytary I will wait until offered before passing comment, i just hope its not another slow release variation.

tbc

L

 

 


#20

Hi everyone ,

An interesting discussion and Leyther has some good points , some of which I instantly recognise ......over the years my meds have been increased or added to .

  I am still getting some quality of life so I do not question the dosage , just as long as they work , and for how long ......... when I asked about maximum doses I was told that there is no max dose , all depends on the individual .

Now I am on .....Selegline 10mg x 1 , Sinemet CR 50mg/200mg x 6 , Sinemet Plus 25mg/100mg x 6 , Amantadine 100mg x 3  , Requip XL  8mg x 2 ,  and Entacapone 200mg  x 6 . 

I cannot remember which order they came in over the years .. My Neuro always asks me about OCB and depression , I tell a few lies and say no but so far I am surviving . My main side effects have been dyskenesia , trying new things out ( novelty seeking ) , hallucinations , and sleep problems .

I can handle my parkies most  days by tweaking my meds timings , some days it beats me , but I will not give in to  it .

Cheers , Peter