Levadopa

[ored13]

Hi. Does anyone have any experience with this drug being used for movement disorder? The hospital is pushing quite hard for my husband to be started on it sooner rather than later. Our concern is the long term effects on his rehabilitation and also getting him off the drug once it's use has run its course.

Thanks!

[cat3]

It's a minefield isn't it. Most drugs have a whole raft of possible side-effects, adverse interaction with current meds or other contraindications. It can feel like you're damned if you do take them and damned if you don't.

I take various different meds, all of which come with possible scary hazards. I tend to measure risks against need and quality of life. If I don't take blood pressure and/or heart meds I risk certain illness or death, so I stopped reading accompanying leaflets years ago ; I see no choice there.

However, if I found my antidepressant was harmful, I might wean myself off and hope quality of life would be bearable ; if it wasn't after some months, I'd restart it. I gave up Arthritis meds 3 years ago and suffer daily with intense pain, but rather that than the possible alternatives.

Sorry Ored, that doesn't answer your query directly, but I think the principle is the same. Hope you'll resolve the dilemma one way or the other m'love.

Best wishes as always, Cat x

[Pairofboots]

Hi ored, you could speak to Parkinson UK, as they will have an understanding of it's use. Some medication if it works, if kept at a therapeutic dose, there is no reason to stop, some maybe detrimental if stopped, some may, as you say do a job, and then the effects are of no further use.

Another good source of information is the hospital pharmacist, they are usually happy to discuss the medication, and do know the good,bad, and the ugly.

[ored13 in reply to Pairofboots]

Today has been a day, I'll tell you that much for free. We had a meeting with the 2 people who were involved in this whole situation. And tomorrow as if by magic we will get a chance to talk to a neurologist. We at least got to find out more information and will see how tomorrow goes. But this seems like a bit of a ln extreme drug for him to go on without having a bit more time for us to explore other options.

[Pairofboots in reply to ored13]

Hi orid, I'm glad you are finally getting to speak to the neurologist.

Try not to necessarily look at medication as extreme or not. Medication is appropriate for treating the symptoms presented. You always look at the best medication for the job at the lowest dose that gives a therapeutic improvement.

In this case there are other options that maybe more appropriate with a view to home care.

Another view to consider, is how long any medication would be required to maintain the gains to the quality of life.

I know from practice, sometimes medication can reach a point where they no longer are effective without increasing. Then is the risks associated with the medication greater than the benefit. Some medication will not be tolerated, therefore alternatives need to be explored. If the medication is appropriate at this stage of recovery, under what circumstances does this change?

I hope that you have a positive outcome today x

[ored13 in reply to Pairofboots]

The neurologist was very thorough and spoke to us initially before James arrived to hear our thoughts etc, which I thought was quite considerate of him. He said to us that this medication would be a trial and that it is essentially quite experimental. Husband has Parkinsonian symptoms (very small steps and barely Audible speech). But he agreed that there was no need to start the medication just yet. Rather to see how he settles when he gets home and then reassess. He is aware that we want to put a program together for his discharge as well. He still thinks that this may be a good option for James. But made it clear to all of us after assessment that there are no guarantees for this medication, that it may work but it also may not give the gains we are after. Also repeated quite a few times that this is very experimental. I'm mainly glad that we have now got a neurologist who had a waiting list of 6 months. So that's a positive. He's also not the gung-ho doctor we thought he would be as he works a lot with our local university on research. So a positive result and an agreement reached. Also glad that the new consultant who was pushing this drug was not at the appointment.

[Pairofboots in reply to ored13]

Really positive meeting and productive. Really glad to hear this.

I remember year's ago working with an autistic man, I watched a programme about tourettes syndrome, and a medication that seemed to turn the tics off.

I thought that this might help with some of the ritualistic behaviour by man in our care, and raised it with my manager who shot it down in flames.

At the next case conference, I was surprised when my manager raised this medication (talk about stealing ones thunder), the consultant thought about it, looked it up in the med bible (BNF), and then said will on balance it was worth trying.

Well from first dose, it was like turning a switch off, and our man became more relaxed. It did seem like a miracle. But the effect only lasted about six months, and the behaviors returned.

Now ultimately it failed (glad now that my thunder was stolen), but it did demonstrate that that in less complex cases, there was a possible treatment. We would never have found this out had we not tried.

It sounds like you have got a good neurologist that will work with you. Now adays, most of the big cheeses or far more approachable and human.

Sometimes we just need a good explanation of what and why and to feel that we are involved in the discussion.

Hopefully for the most part, it should be plain sailing from now. Really happy for you x

[New_beginning in reply to ored13]

Think the neurologist was very honest I hope this meeting has helped with sharing your thoughts more. Again you are doing fantastic following areas of concern for your husbands best interest. X