Slow or normal L-DOPA?

[Grey_Area]

I just wanted a very quick straw poll...which sort of L-Dopa works better for you; slow release, normal release, or a mix of both?

I used to do best on all slow, but these days a 50:50 mix seems best.

[Nikosmom]

If you don’t mind taking frequent pills, I strongly recommend the Extended Release version because in my estimation it mimics the steady release of dopamine from the brain. Also minimizes the chances to develop dyskinesia. My personal regimen is as follows:

After 7 years from diagnosis, i started Sinamet 4 times a day )25/100CR (generic manufacturer Accord). Shortly after starting I doubled the times I took the extended realease pills.

For 2 years, I took a pill every 4 hours around the clock. I had to change dosages to 50/200 because Accord stopped manufacturing the 25/100. I discovered that other generic brands don’t work very consistently and i was having longer off periods, specially the blue color pills.

[Rujack in reply to Nikosmom]

I generally take one 25/100 ir to get going in the morning, which usually starts working in about 45 min and I get about 45 min relief. As soon as I detect the off period coming on, I take a 25/100 cr, but bite it in half and chew it a very slight amount. I usually get about 1hr 15min from this one, then I take another cr, whole this time and I get about an 1.5 hours relief. I set my timer for 1.5 hours and take one cr at that time interval throughout the rest of the day.

Like many others, I do my best to time my eating and size my portions such that dyskinesias are mitigated with reducing the effectiveness of the meds.

[Rujack in reply to Rujack]

Also, the ir version gives me severe dyskinesias.

[Grey_Area in reply to Rujack]

Yeah I think I suffer with that too (instant release / dyskinesia)...I think it peaks quicker than I can use it up.

Other than that your regime is very...bespoke! Nibbling the CR tablets is precisely what manufacturers don't recommend...but I suppose it gives you a sort of halfway option...faster than CR, but slower than IR...

[Nikosmom in reply to Grey_Area]

I agree with you about chewing on control release. I put under my tongue a small piece of instant release. It generally works within 15 minutes.

[Nikosmom in reply to Rujack]

I agree with Gray-area about chewing on control release. The manufacturer advise against breaking the special coating of CR.

I have a prescription for IR. I put under my tongue a small piece of instant release. It generally works within 15 minutes.

[eschneid]

CR and Rytary never did much for me. IR has been a friend for over ten years. I do take one 50-200 CR at bedtime, but not sure how much it helps anymore.

[Grey_Area in reply to eschneid]

Our pills, like our disease and ourselves, are subject to endless variation. I just wanted a snapshot of the breadth. It has already brought up the "pill nibbler" method which I would not have predicted!

[Daisies22 in reply to Grey_Area]

I am struggling with both IR and CR (Madopar),The CR seems to work better than the IR though only during the night. During the day the CR completely fails to deliver, this is something I don't understand.

[Buckholt in reply to Daisies22]

Could be diet related? I am very sensitive to food, and essentially avoid protein and only otherwise eat lightly in the day because it can reduce or block the LD working. Why not try skipping a meal or two and see if that helps, if you’re not trying that already?

[Daisies22 in reply to Buckholt]

Sensitivity to food is a problem for me too. I eat very little protein and avoid anything containing fat. My BMI is very low and this worries me as being almost underweight might be causing/contributing to my heart problems.

[park_bear]

I prefer the slow release. Discussed details here: healthunlocked.com/cure-par...

[LAJ12345]

my husband can’t tolerate the slow release. He seemed to burn through them very fast and overdose on them and he become almost completely disabled within 3 weeks on them. After changing back to IR he has been much better for the last couple of years.

[acceptanceand]

hi Gray area, I’ve tried three times since Christmas with different types of Levodopa- but not felt great on it nor did it afford me any symptoms relief.

I have been slowly trying Stalevo this last month- no relief yet but I don’t think I’ve had any adverse reactions just yet.

I am just keeping my fingers crossed that it starts to work soon as the main symptoms and I would like to improve are my walking and writing.

Tony

[bigl62 in reply to acceptanceand]

Try getting checked for H-pylori. After treatment the c/L pills worked for me

[Karmaone]

I had a disagreement with a pd nurse that the CR was working for me better than normal Senimet.

She claimed that CR was too unpredictable during the day and I should only take it at night. I switched from my routine of 2x CR one late morning and I've in the evening, as well as 3x Senimet quick release, to all regular Senimet. Result: lots of dyskinesia. I'm back on Senimet CR and feeling I could even take less than before.

I've been biting a CR in half (not chewing) and having food results. My neurologist has prescribed some half Senimet CR as biting it 'ruins the slow release', showing that maybe I'm somewhere between slow and fast release.

Hope that made sense! I'll just keep experimenting 🤔

[Grey_Area in reply to Karmaone]

I feel your pain. I'm sick of all the health professionals treating me like a child.

[Buckholt in reply to Grey_Area]

Over the years, my neurologist has made various suggestions at our appointments, but I have not always agreed. He always wants me to take more drugs and I generally resist. I think he expects me to ignore him now.

[jeffmayer]

Normal

[hmm777]

I use a mix. Both every morning and again at my second dose. For my third and last dose I will take only CR unless I am feeling under-medicated, in which case I will again take both.

[Jmellano]

i take rytary, (2) 145's at 7am and 6pm and 9pm, (1) rytary 99 and (1) rytary 145 at 2pm, (2) 145's at 10am and (1)amantadine (for dyskinesia) when I was taking c/l immediate release only, it was a bigger daily dosage of levodopa, than what i am taking in rytary. my off time came on sooner and my on time was decreased while on immediate release only

[Jebbie12]

first of all, every one reacts differently. But for me, my husband called Sinemet CR , Sinemet Crappy Release due to it”s inconsistent ability to relieve my symptoms. I prefer the regular Sinemet

[Grey_Area in reply to Jebbie12]

As you say, we're all different - and so are the pills. I never had a problem with Merck's "real" Sinemet...but the generics are definitely a bit hit and miss.

[YOParky in reply to Grey_Area]

Yes, Grey, the pills vary and will continue to vary as more and more mfgrs are being allowed to get in the PD pharm market(especially CL) Various fillers are being used without regulations to keep the consistencies, quality and ratios of what's being put into "the gold standard" drug for PD. if there were only data to be found on what was used 20,30, 40 years vs what's ALL currently put into today's c/l;truthfully.

[Parky1992]

I use slow 25/100 and 2 CR one at dinner about 4:45pm to 5pm and then the 2nd at bed time. From 10pm to 11pm 11:30pm.

Answer the poll, I would say mixed.

[Grey_Area]

This has been enlightening. My Parkinson's Nurse has the same opinion on the benefits of "normal" release over controlled as Karmaone's, but I also find that in my case it's not borne out.I take pills every six hours. Again, my nurse wanted me to "shorten the interval" as she put it... switch to normal release, at a lower dosage (150mg instead of 200), but every four hours instead of six - but critically, no extra doses, meaning I'd be going 12 hours with no medication at all.

But this clearly demonstrates that they are not listening to me.

My one major problem is sleep, and the only reason I'm not sleeping is the physical symptoms, specifically rigidity/tension in my hamstrings, leading to cramp in the back of my thighs. I simply cannot sleep until that is addressed, and once asleep the return of the symptoms wakes me, even at the six hour interval. To go double that would be torture.

There are therapies I have found through Google searching; muscle relaxants like Baclofen, repurposed therapies like Quinine bisulfate, supplements like Magnesium Threonate or Glycinate, sleep inducers like Melatonin and finally, sedatives like Clonazepam. Despite discussing the problem (physical symptoms preventing sleep) several times with my GP, my specialist and the Parkinsons nurses for nearly a year now, several of these therapies remain untried - and none of them were ever volunteered from them - why am I the one doing all the work here? I did twist the Parkinson's nurse's arm to prescribe Melatonin. It helps by simply making me sleepier, though that does sometimes roll over into the day, meaning the typical "elderly gentleman afternoon nap" is now a "thing" sometimes. Fortunately, I don't suffer from the "drop off without warning" problem. I have found adding a "Kalms" night time tablet (Valerian root, I believe) does help further, even though combining this with Melatonin is specifically cautioned against. I have also found (again, more Googling) that plain ol' Ibuprofen can help reduce muscle spasms, so now I take one 200mg "Flarin" capsule about 30 minutes to an hour (depending on how severe the spasms are) before my regular tablets.

The Parkinson's nurses suggested Opicapone, which damn near killed me (no sleep - and I mean ZERO - not even a nap for 5 days plus a UTI for good measure), Entacapone, which I tolerated, but other than the first day seemed to give none of the claimed extension of "on" time, and lastly, Stalevo...but this last seems to just have been a reintroduction of the "immediate release L-dopa is better" opinion (Stalevo is L-dopa, carbidopa and Entacapone combined, but the L-Dopa is effectively normal release). They introduced it gradually over four weeks replacing one dose of my four at a time. I got the feeling during the change that I was just feeling somehow quantifiably "worse"; so I changed back. Possibly I did it over too short a timescale one week) as I had some anxiety flare ups... but I wanted to have a steady period of being back on my "old" regime before my appointment with my specialist on 1st August.

I'm back on just 2 x 100/25mg Sinemet CR, every six hours, as well as Rasagiline and the ever present vitamin D in the morning, and the Melatonin at night. (Plus the Kalms tablet and the Flarin ibuprofen and actually, I feel better...well, I feel I'm in the same position as I was 12 months ago...meaning all the changes that the "professionals" have suggested have only made me feel worse.

I still think what would improve my symptoms further is simply a further increase in Sinemet - either moving to a four hour dosing pattern (but with SIX daily doses, not four!) or simply increasing my current 200mg ldopa dose to 250. But my specialist has this 800 mg daily limit in his head and is very reluctant to increase further. Which to my mind is annoyingly arbitrary, especially as the same figure is being applied to both the normal and CR version (surely CR, with it's 36% lower bioavailability, should allow for a higher maximum?).

Sorry, that was a lot...but it's frustrating to hear other people having success with certain regimes, but being prevented from trying them myself by the very people who should be suggesting them!