STILL HAVING "OFF PERIODS" PLEASE HELP

[OREOLU]

Hi Friends, I am in the group of pwp that takes alot of sinemet over a 24hrs period.I would say 11 and half tablets of 25/100mg.I recently got some support on the thread to increase from 2 tablets every 4hrs to 2 and half tablets every 4hrs.This ncrease actually helped,but whenever I get stressed out,sinemet only works for two hrs.I still haven't got my Rytary coverage problem solved but I have applied for the patient medication assistance program. Pending,when I receive my Rytary,I will like to know if decreasing the intervals between doses of sinemet generic has worked for you.If so kindly tell me your drug dose and schedule.This has actually been a trial and error thing for me. Thank you very much.

[Hikoi]

Rather than increase the tabs and stick to four hourly dosing I would trial 3 hrly doses. You may be very sensitive to fluctuating levels and as levadopa half life is 60 - 90 mins you may go too low between doses. The ideal is to take a dose before you go off and so you keep your levels even. Sounds easy but it isnt. I take meds now at 7am 10am1pm 4pm another dose in the evening but it doesnt work so well as I have usually eaten. (Haven't got it right yet.)

I take sinemet long acting 100/25 and 1 or 2 sinemet immediate release 50/12.5 each dose plus an agonist. It takes at least 3 days for the schedule to settle in for me. Hope you can work out something that suits you.

[OREOLU in reply to Hikoi]

Hi Hikoi, It's really hard to individualize suitable drug regimen in PD. I will keep trynig.Thanks.

[Hidden]

Hi OREOLU:

"I will like to know if decreasing the intervals between doses of sinemet generic has worked for you..."

Yes, it has worked for me, and it should work for you too...

As I suggested in the previous thread you can see how long it takes for your first dose (assuming 2.5 tablets now) to go off, and then subtract some time margin, and then use that time thereafter.

Or you can just reduce the time step by step until you have no more off time (e.g., 3.5 hrs, 3.0 hrs, ...).

Note, I find it very odd that a dose that has been shown to work for 4 hours sometimes only lasts you 2 hours. In my experience a large fluctuation like that, can only be cause by what you eat and how well your digestion is working...

[Jlloy5]

Before DBS I was taking c/l every 1.25 hours. If it's only lasting 2 hours, I would be taking 1.5 tablets every 1.5 hours and consider looking into DBS. My only regret was that I didn't do it sooner.

[OREOLU in reply to Jlloy5]

Hi jlloy, I happy for you that DBS is working for you. Are you a non tremor dominant Pwp?

[Jlloy5 in reply to OREOLU]

I'm tremor dominate

[Cindyross in reply to Jlloy5]

This may be a stupid question but what is DBS. I take 1 1/2 tabs of Levadopa every three hours but I have more down times

[Jlloy5]

Deep brain stimulation

[OREOLU in reply to Jlloy5]

Thanks for input. DBS may be my last resort.

[Jlloy5]

My only regret is that I didn't do it sooner

[OREOLU in reply to Jlloy5]

What's the best age to do it? I learnt that,it's span is based on the progression of the disease,which is unpredictable.

[Jlloy5]

I'm not sure that there's a best age, but I'm 47

[OREOLU in reply to Jlloy5]

Well that's young to me,and you still think you took the decision late.I thought there is usually an indication before,it is considered by the Doctor.Like,if the medications stop working,or if there are complications like dystonia and dyskinesia. I once suggested it to my MDS the second year I was diagnosed,and he said,it was too soon.He said,there are lots of risks involved,and his approach is to try medications first. I read it somewhere online that,it is better to do it before the age of 70.

[Jlloy5 in reply to OREOLU]

I exhausted all medications first and was suffering from severe dyskinesia and dystonia

[OREOLU in reply to Jlloy5]

I hope the dyskinesia and dystonia have disappeared.Thank God for DBS.Enjoy it while it last.

[Somic67]

my opinion (shared with my neuro) is that incrase the meds is a short term solution.

The more you get the more you will need in a recurring circle.

There is no way to have L/C lasting long with its half life of 60'-90'.

the big mistake of our std meds is that they have too much L/C and body/brain try to protetc itself reducing sensibility and increasing waste; this is because neuro/patients looks for immediate results, thus highly overdosing. But dopamine is missing in the deep brain where Levodopa arrives in a effective quantity after months while it arrives immediately to the motor centers in the brain frontal cortex.

The opposit, mucuna pruriens (without Carbidopa) given with meal (es. glass of milk for the fat) for 1 or 2 months before every increase and when effective reduce to stabilize response, can last forever without need to change therapy.

CBD+THC oil is available for sleep/stress problems.

[OREOLU in reply to Somic67]

Hi Somic67,

But PWP also overdose on mucuna pruriens,and develops dyskinesia. I have raw mucuna pruriens,but do not know how to extract the Levodopa.

[Hidden in reply to Somic67]

It's a massive call to say that mucuna will work forever without the need to change the dose and there's no evidence that i am aware of that supports this.

[Somic67 in reply to Hidden]

unfortunately there is no study on this. i got this from two different sources, one is a book of a neurologist (in italian)

but it is specified to work only if mucuna is the very first and only "drug" taken since the beginning. if you start with std meds levodopa is too much and increasig "addiction" is developped and then it is hard to revert back

[Rosenmu in reply to Somic67]

I have never heard of any one on Mucuna developing dyskinesia, I've been on it 3 years and did have to increase my dose last year and it was very effective. My only symptom of overdose was to libido that I'm aware of. I do take other supplements like B12 for nerve issues, magnesium for sleep and constipation, etc.

[Hidden in reply to Rosenmu]

jnnp.bmj.com/content/75/12/...

No differences noted between CL and MP re dyskinesia.

[Somic67 in reply to Hidden]

i believe that dyskinesia is a brain damage (or unbalance) caused by too much L/C for too long.

in the study you mention the damage is already occurred and therefore mucuna at equivalent levodopa gives the same problem than std meds

mucuna can not heal the brain therefore the dyskinesia continue to happend at every levodopa intake (whatever is the source)