Patch

[michaela13]

Is anyone on the neupro patch without the use of sinemet? My neuro wants me to try the patch and get rid of the sinemet. Is that possible? Anyone have success with this? I'm on 25/100 4x a day, but need something else to reduce diskynesia and get me through the night.

[grey]

Hi Michaela13

I have used Neupro Patch (rotigotine) for a number years. Initially as a mono therapy. Like most dopamine agonists, it suits some people and causes problems for others. I can only say it was good for me.

I started on 2mg/24hr and titrated to effective 4mg/24hr. Over a couple of years, this went up in 2mg/24hr stages until it reached 12mg/24hr. The next step was the introduction of Sinemet.

Pacth stayed at this level and sinemet was increased as PD progressed. Eventually I started suffering from odeema and mild visual halusinations. Patch was then reduced to 4mg/24hr. It's strange to admit that I was annoyed by the decision to reduce the patch - now seems rather irrational, was I in some way addicted? A lady in Spain talked of similar feelings and kept bursting in tears for next 48 hours. I cannot recall any similar report for other medications.

Some people have skin reacion to patch - I think the adhesive is the cause. E45 is recommended by many, applied to skin after removal of old patch. It is recommended to use a different area of skin each day for 20 days before re-using skin areas. I find 4 ok. Excess fat is useful; being a hairy male is painful and shaving is recommended on target sites as excess hair reduces efficiency of bond hence reduces flow of medication.

I have heard some patients have problems with adhesion and apply micropore to strengthen bond. Swimming is ok, use of micropore recommended. For those paying for meds, it is expensive. There were problems with the adhesive in warm climets, requiring patches to be stored in fridges but this was fixed years ago but I noticed recently this quoted as a drawback - it was but no longer is.

[Hidden in reply to grey]

"For those paying for meds, it is expensive." In a short time, it should be available as a lower cost generic.

[grey in reply to grey]

Michela,

4 x 100/25 seems very low dose to cause dyskinesia.

Use of MAOb inhibitor should also be considered. Personally that would be my first choice med to start with.

Can you list Meds you take, and when were you diagnosed?

[michaela13]

Diagnosed in march 2012. Had breast cancer, chemo, and radiation in 2011. I know i had the pd at the same time as the treatments in 2011. I'm on 4 sinemet 25/100. A lot of trouble walking at night to the bathroom. Without the sinemet I'm unable to walk.

[grey in reply to michaela13]

Before I go on, I'm like you a patient, not a medical person. So I offer no advice. As I don't know you, I'm keeping it simple, so excuse me if I'm teaching you to suck eggs!

Something doesn't sound right. You are simultaneously suffering from dyskinesia and problems walking.

Problems walking are normally a straightforward Parkinson's symptom, indicating a shortage of dopamine. Fix is more levodopa (sinemet in your case). Levodopa can pass through to the brain where it is converted to dopamine and if level is sufficient it gets you walking. When levels are low, walking difficult and you tend to shuffle along.

Do you freeze when walking. Typically, you can't lift your feet off floor. It feels as though your feet are glued to the floor. Other bits of you work ok, your feet can be stuck to the floor but you could thread a needle.

Dyskinesia implies too much levodopa, which I feel is not likely on your current dosage of levodopa (sinemet). Also, typically, dyskinesia is not troublesome in early stages, more like 10 - 15 years.

Are you sure it's dyskinesia and not tremour?

Tremour is like vibrations, regular, about 4 vibrations each second and is involuntary. Affects say a hand. It is a PD symptom and therefore responds to sinemet in same way as your walking. Sinemet therefore improves your walking and reduces tremour.

Take a look at

parkinsons.org.uk/sites/def...

Dyskinesia is completely different and not related to tremour. Twisting body, jerks. Involuntary movementsm in legs or arms, writhing body or neck, twisting trunk.

Take a look at:

parkinsons.org.uk/sites/def...

Medication: as your walking is your main problem, you need more dopamine, so increasing levodopa dose is possible, ie take more sinemet. If your problem is only happening at night, due to dose not lasting long enough one solution is to use a controlled release sinemet which outputs a constant flow of sinemet over a longer period.

Another option is to use dopamine agonists which mimic dopamine. Neupro patch which is the one proposed is delivered by patch and produces a more constant dose as it is changed once every 24 hours, rather than every few hours if pills are used.

Either way, another drug could be added, called MAOb Inhibitor. Dopamine, once it has done it’s job heads back to where it came from. On the way back, some is removed and destroyed, keeping stocks fresh, the remainder recycled.

The destruction can be reduced by use of MAOb Inhibitor. That leaves more to be recycled, reducing the amount of sinemet required. Also reduces dopamine agonists if used. There are several on market such as selegilene and Azilect. Azilect is reported to have additional benefits, slowing down the progress of PD, but is much more expensive.

Enough for now. Hope it helps and post any queries you have.

Grey

[michaela13 in reply to grey]

The last neuro wouldn't give me azilect because of my blood pressure. I did try selegeline for about a week. It gave me a lot of diskenesia and swallowing problems, but I think it's because i needed to back off the sinemet. It seemed to work really well after 3 days. I wish i could try it again.

[michaela13]

Thanks Grey.

[Pete-1]

Usually diskynesia is reported as a side effect of taking too much Levodopa (or for too long). So one approach is to take smaller doses of Levodopa but more frequently. That way the brain may be able to better match supply and demand without taking a largish dose that is dumped into the brains circuits all in one go. This may be apt as the disease progresses and is unable to store Dopamine anymore, so that there is no uneven supply.

[paddyfields]

I am puzzled as to why your neuro wants to get rid of the sinemet altogether as most seem to favour a mix of sinemet and d.a.'s if anything. I am on 4 mg rogotine patch which I resisted for three years because of a family history of addiction and obsessive behaviour. I agreed to try them because I was starting to have dyskinesia when I went up to 5 mgx25/100 sinemet, i.e. one and a half tabs at 7 am and 11 am definitely caused the dyskinesia although a friend has suggested that it may also be taking more than 25/100 in one go. I now take 4 x 25/100 (dx.5 yrears), Azilect and the 4mg patches daily and am more or less back on track. No compulsions so far after 6 months., no skin reaction to the patch although I am prone to eczma and no depression at any time before or after starting meds. Hope this helps even if only one person

[michaela13]

Thanks

[michaela13 in reply to michaela13]

Because I am having diskenesia and swallowing problems. He thinks taking the patch and backing off the sinemet will help.

[Pete-1]

But Sinemet is the best treatment available to treat PD ??? I also take 4 x 125 mg Sinemet and would like to take it more frequently to minimise the off - periods when walking becomes difficult and mildly terrifying. I also take a (12 hour) prolonged release version at bed time. This seems to help with midnight manoeuvres.

[michaela13 in reply to Pete-1]

Pete does the extended release sinemet that you take at night wear off before the morning? If the sinemet wears off, I am getting terrible freezing episodes, especially during the day. After I take the last one in the evening, I usually maneuver pretty well after some time passes. My other neuro told me I couldn't take the azilect because my blood pressureis so erratic. But I would like to try the selegeline again.

[Pete-1 in reply to michaela13]

This is slightly difficult to answer because I have very odd hours. The effect from one of these 12 hour pills is less profound than a normal dose of Madopar but it does seem to help. For example it is 5 mins to 8 and I have been fairly steady so far today. Not as steady as my normal first dose of 125mg Madopar.

I've been taking Selegiline for years, probably over 6 years and I have no idea what benefit I might be getting from it as I haven't experimented with not taking it. I take 1 x 24 hour tablet of Selegiline per day.

[ancee]

Has your neuro suggested amamenadine (?) ? I know several people who have had really good results with their dyskensia.