Yes
that sounds like a Good sensible plan for You Casie and eventually myself, Less (levodopa) equals more(dose time we read) with the inclusion of the entacapone hopefully, i guess if that all goes too plan with benefits it may by quite some time delay the need of ultimately DBS, who know's in time there may be extra options available too all of us.
Enjoy those strawberrys.
Sea angler et al, I hope I'm not too late to add my two-penny-worth on the topic of entacapone.
i was diagnosed with PD about five years ago, which my consultant advised me to treat progressively, first with rasagiline (Azilect) then after about 12 months adding Sinemet as a mixture of the slow- & normal release forms. Then in March last year the consultant advised replacing the slow release Sinemet with Stalevo which contains entacapone.
Over the course of a month or two I got up to 4 Stalevo 100 each day, so that, with the normal release Sinemet I was also taking, my daily dose of L-DOPA was just short of 1gram, combined with 800mg entacapone. The result was that the pain which is the most aggravating of the symptoms of my PD was better controlled but I had almost all of the stated side effects of entacapone, of which the more unacceptable were weight loss, diarrhoea, and changes to my senses of taste & smell. I dont believe the latter are hallucinations, but genuine changes.
I discussed this with my consultant and agreed that I should try again with the entacapone but increasing the dose much more slowly to see whether there was a balance between the effect on pain relief and the side effects. The problem that then arose was how to increase the entacapone more slowly and yet provide a smooth daily dose when the only dosage of entacapone, whether on its own, or in Stalevo is 200mg.
I cannot understand why the manufacturers limit themselves to only producing this one-size-fits-all dose. Suffice it to say that I took myself off Stalevo which I replaced with Half-Sinemet and then slowly re-introduced entacapone in much smaller increments, with a low dose four times a day. I dont suppose it's proper to describe precisely what I've been doing to the entacapone tablets but I'm sure you can guess. After a period of about eight months I now tolerate a daily dose of 700 mg of entacapone with few if any side effects. If that state persists I will eventually take myself back up to 800 mg.
I hope you find this useful. I find myself treating the symptoms of my PD as an experimental problem as if I were back in the laboratory ! I just wish the manufacturers of entacapone would start producing the drug in smaller doses, of say 50 & 100mg, as well as their standard 200mg tablets.
Any comments folks !
Hi one_old_man
The more the merrier, makes for a better informed choice for all reading with added experience..
Thanks for the info, I didn't know Entacapone came only in one size 200 mg doses even with Stavelo ,that doesn't seem too give much room for maneuver as a gentle starting dose to ease into it like we have had with small doses of Sinemet or Madopar, 200mg or nothing unless ' you can guess' comes into it.
I do hope the strategy for a while at least until obvious change is too keep things low but spread out, I had read briefly about some side effects as you describe and some reviews elsewhere they feature as well.
Just too update
After the Neuro's letter arrived, a Gp appointment..
the letter mentioned adding not as i thought 1 pill but 1 pill x4 daily, at the bottom of the letter it mentioned adding entacapone at a later date, but also as a option now a over night CR Madopar, after much thought i thought the over night CR would be more beneficial than 1 added madopar pill x 4 daily as i have thought recently off dose dystonia especially in the mornings was coming into play.
i also thought i'd like too try if possible in keeping the doses of levodopa low so when entacapone is eventually added at a later date i may also draw down the madopar dose a little.
Hi one-old-man
Thanks for all that info on entacapone. Very useful. Have just read the data on drugs.com, all rather off-putting! Sounds like it needs to be taken with great caution. Makes one wonder who can cope with whole 200mg tablets, when it has taken you such a long time to increase your dosage. Please keep us updated with your progress.
Best wishes.
Hello Sea angler -
Good that you have heard quickly from your neuro. I think that usual advice is to try to keep Madopar dosage as even as possible throughout the day. Hope the CR will help you. So much is trial and error with, if lucky, not too much of the error. I'm still waiting for response from my consultant about adding CR!
S
Hi All
I've received my orders from the Neuro Prof so 'Boots' are getting this ready for me.
He has told me to continue taking Madopar Dispersible 250mg at 6.00 and 8.00 a.m.
I shall now take Stalevo from 100mg to 150mg x 5 times a day - 8.00am; 11.30a.m: 2.30p.m; 6.00pm and 9.00pm.
THEN
I have to stop the 62.5 Madopar at 4.30pm and Madopar dispersible 125mg at 11.30am.
Finally, after 2 weeks, I have to stop Madopar Dispersible 125mg at 2.30 and 7.00pm.
It's pretty 'freekin' but it has to be done.
All the best for now,
Casie
Casie, best of luck with your new cocktail. Please let us know how you get on.
It sure is 'freekin' !
S
Hi to all, I was diagnosed with Parkinsons about 5/6 years ago I am 62. ( memory sticks now and then) I also have Chronic Fatigue Syndrome and C.O..P.D. I have posted in the past but gave up when I went through a bad phase called I FEEL SORRY FOR ME. Last year my shakes started getting worse aches e.t.c. after a visit to my Parkinsons Nurse medication was changed I started taking Entacapone along with Madapar 100/25 5 times daily, (plus meds for other problems) After 2weeks I felt much better so Neurologist change my tablets to Stalevo 100/25/200.-- 1x5 daily which he said was the same content but less tablets. I was doing fine then after around 6 weeks I was a totaly different person, stiff movements I could hardly walk,unable to eat feeling sick all the time and when I really tried my throat seemed to lock and I started choking,My Parkinsons Nurse arranged for me to see loads of therapists as I was losing weight and speech and I was told it was not the Stalevo but I should start again just on Madapar 100/25 --5x daily within 1 month I was back where I started Shakes e.t.c but eating well speech improving GREAT BUT recently all my Parkinsons symptoms returned shakes unable to hold a cuppa ,appetite getting worse i got in touch with P/Nurse i am back on Stalevo and going to see the Neurologist next week to see how i am doing and I will just take it as it comes like everyone else.
That seems quite confusing Soop especially if you keep trying as your told too, and then cant put your finger on why or what going on with other stuff going on with your health as well too narrow it down, i do hope its sorted for you too make sense of it for you and Casie as well, Supa i have started the over night CR but maybe too early too tell yet on benefit of it. lots of pollen in the air i wake up a bit groggy as if i have a cold added too the off feeling.
you on 250 cr night time sea angler, i keep getting very claming & hot flushes try my 62.5mg madapor tomo walking very dangerous at mo
Hi Sea Angler
I have had a response from my Neuro re Madopar CR. He is happy for me to try it, but thinks it will only last about 4 to 5 hours rather than all night. I should get prescription next week & let you know any progress.
Hope you get some benefit soon. Re stuffy head - I take a Loratadine tablet each night which relieves blocked up hayfever symptoms. Doesn't cause drowsiness like some hayfever remedies, and Tescos own make is very cheap.
S
Hi everyone, has anyone tried Curcummin Supplement ? I get a lot of pain in my legs when walking and am wondering about this natural therapy.
Hi
I know nothing of Crucummin?(turmeric) for pain other than i occasionally add it too fishing baits,Sorry. although i do suffer muscle joint pain at different times.
Just too update
The overnight Madopar is a single 125 Gus.
It has enabled me too have a deeper fuller nights sleep SUPA(worth a try).
But i still wake up groggy and off in the mornings, A long appointment today with the PD nurse we went through lots of issues it has been agreed too start the entacapone as soon as the letter goes through too the Gp, I will keep the Overnight madopar CR, if i tolerate the entacapone and if i don't (1 in 10 don't apparently) if successful a eventual move over too Stavelo, i see the PD nurse again in 2 months and neuro 4-6 months.
Very pleased to see you are benefiting SeaAngler. Have just got my CR pills. There is only the 125 dosage I think. What time do you take it? Do you replace your last normal Madopar of the day with it or add it as an extra?
Sleep well!
S
HI Supa
i'm very pleased by it too, no more nights waking up tense in pain since.
i take my last normal dose about 8 pm and then the CR after 1030 .
Thanks. I'm trying not to increase my overall daily dosage too much, which lately has been 5 x 100/25 Madopar, last one at about 10pm, plus one more 50/12.5 sometime between 2am &4am to calm twitchy legs.
So, now trying having 4 100/25 during day, then a 50/12.5 at about 10pm, & a CR at about 11.45. Slept much better last night, altho still woke v briefly at about 3.00, 5.00 and 6.00 am. At that time was getting twitchy, suppose the CR had worn off, so took a 50/12.5 Madopar which kicked in after about 45 mins & then slept until 8 when alarm set. Not too bad for a start.
My sleep pattern has been terrible for years (can't actually remember sleeping all night through since I had my daughter who is now 30 something!) so I imagine it may take a while for it to improve.
Well just started taking entacapone today will let you know if i see any changes !
I thought i'd write a honest review now i'm taking these along side Madopar..
Why am i taking them?
The aim is too lengthen the dose of Madopar too keep it in the system for longer, boosting the dose.
So what's in the box?.
My Gp's Practice's mission is too save money, If your on a long term prescription and prescribed Beef you going too get Horse,in other words you'll get generic. the pills come in a little pot, the lid has sharp edges and the info sheet is the usual generic smudged ink, the pills are almond shaped orange brown, with 200 roughly indented on the pills 30 too a pot.
So whats the pro's??
i tolerated the Pills &I now have little pots i can put, short nails,screws, nuts,bolts,washers and panel pins in.
So what's the Cons??
My neuro,PD nurse, and Gp all said "these pills will do absolutely nothing on their own", I could shorten that too these pills do absolutely Nothing !!, except that is turn my Pee too bright orange, but there must be something within the Pill??, lots of commercial food colour powdered pigment dye,glucose perhaps? giving that i got a boost, what did i actually get in length the dose, 20 -30 mins perhaps, but i am deff Off after 3 hours,Quicker if i'm doing something stressful
Also i noticed if i had a pee within a hour of taking the pill my pee would be bright orange, but if i Pee'd again after that within the next hour, my pee(sorry too be graphic) would be normal, Logically i would think what ever is within the Pill has passed through my kidneys and is Gone.
The Future
I Think I'll stick with Madopar, and not move onto stavelo, why because Madopar is just as good as sinemet, So there's no point in moving from madopar too stavelo(sinemet & entacapone) and anyway if i did i would just get the Generic version, and i fought tooth and nail too Get branded Madopar.
Conclusion?.
Is There a Holy Grail of boosting your pill dose?, No i dont think so, I'll just be content in getting what i do for now, Anything i Need too do, i'll do it within that 2-2.5 hours, after that, Relax, put my feet up, and wait for the next Dose Pill time, in the Future something better may come along, but for now it's Madopar & madopar CR over night.
I have posted before about our lovely neuros advice.....take your next dose at the time the previous dose is wearing off. When you have the timing right, start reducing the dose in small amounts over a number of weeks until you find the smallest dose which keeps you mobile dose to dose.
This little and often regime is faffy to get right , needing a pill cutter and lower dose tablets and patience but we got there in the end and keep to 2 hourly dosing. The day's total stayed almost the same.
In the longer term, we are hopeful that Rytary will help as each extended release pill contains tiny mini doses all primed to deliver one after the other...keeping the dose level.
Going down well in the USA but not available here yet.
Wonder if it's anything to do with the cost of a new med under patent?
Aren't PWP worth it?
Those poor souls previously unable to leave a million pound house without tax relief must come first.
GG
hi S A
I agree totally with your pill-osophy.
I have benefitted a bit from the Madopar CR - take it at about midnght and usually get 5 hours deeper sleep than before. then take a 50/12.5 Madopar to stop twitchy legs and sleep on & off until about 8am. Have reluctantly increased my 4 x daily dosages adding a 50/12.5 to every 100/25 - my walking had become really poor, think this is helping. Takes nearly an hour to kick in if very "off", then get 2-3 hours ok-ish if lucky. As you say, depends what I am doing. Alternative is to take lower dosage much more frequently (say 2 hourly) as GG suggests hoping to reduce the "off" times. May try this.
S
