Finding the balance between Dyskinesia and off time

[mymomhaspd]

While i know that there is no magic pill here , i am at my wits end on trying to find that balance . I also wanted to go natural , so it was suggested that a combo of mucana and sinemet (she can only take 1/4 of 25/100 sinemet) might alleviate it . Sometimes it seems ok, sometimes it makes her more dyskinesic. That also means she wont talk much .. she is getting the best organic vits and multiple antioxidant therapies like NAC, ALA , ALC etc , alomg with turmeric , probiotics etc . I just started the thiamine therapy in order to improve energy - B1 - 500 mg twice a day . She also gets b12 injections monthly. I havent seen major improvements in on time or energy - any advice ???

[park_bear]

Is she taking the immediate release or controlled-release version of Sinemet? The controlled-release version provides a much more even flow of levodopa.

[mymomhaspd in reply to park_bear]

I dont think she did great on CR when we tried it a long time ago - i feel she does better when we give her less sinemet . Maybe all the other modalities are working and she doesnt need so much levadopa ... i dont know ..

[mymomhaspd in reply to park_bear]

HI park_bear, if we needed to move mom from immediate release sinemet to a more controlled release one , how would we make that transition.

[park_bear in reply to mymomhaspd]

The immediate release version never worked satisfactory for me, so I only took a few doses before starting the controlled-release version. So I may not be the best person to ask. Also I am not an MD. With that said, they are the same ingredients just released more evenly. So I would think you could just substitute one for the other, taking a bit more for the initial dose of the day to compensate for the higher initial level of the immediate release version.

[rhyspeace12]

My husband did much better on Rytary than Sinemet for his off time. If he had dyskinesia, it was only a little in his face. It is expensive but we found an assistance group that paid for the copay.

[mymomhaspd in reply to rhyspeace12]

Is Rytary - the same as CR ? I think long time ago when she tried it , it caused a ton of dyskinesia . Havent taken it lately, might talk to the Neuro bout that .

[rhyspeace12 in reply to mymomhaspd]

I'm not sure what CR is. Rytary is a form of carbidopa/levodopa.The motion specialist had him taking it 5 times a day as need, every 3.5 hours. His doctor had samples to try.

[Redginger]

When I was caring for my mother, we had to give her a methyl B12 shot more like once a week or more often, definitely much more than once a month.

[mymomhaspd in reply to Redginger]

i am giving b100 everyday and also started B1 twice a day

[Erniediaz1018]

Get her on the right dosage of B1 and you’ll see the dyskinesia disappears. Dyskinesia which is the worst side effect symptom from the levodopa (mucuna pruriens/ 100% levodopa) disappeared within a 3 month period of consistent use of B1 if remember correctly.

[17Hillview in reply to Erniediaz1018]

If it will take 3 months to see a change on B1, then how can you determine what the right dose of B1 is? Just something I was wondering. Thanks.

[Erniediaz1018 in reply to 17Hillview]

I saw changes immediately, more energy, depression lifted, but for dyskinesia specifically it took a while, but it worked. Also I sometimes take five days or so off from B1 and the dyskinesia comes back therefore I’m positive it’s the B1 combined with levodopa which removes the dyskinesia.

[mymomhaspd in reply to Erniediaz1018]

So i just started B1 a week ago - did u take this with a combo of mucana and sinemet or just allopathic meds ? Mom had a fall a few years ago, had a C2 fracture and the worst thing is the doctors instead of trying gave up on us - she had a ng tube down her throat for 4 months - compromised her speech and talking and being on bed didn't help - and i think the dyskinesia she used to get made her body super contracted .. there are times she will talk absolutely normally but those times are few and far between the dyskinesia and the times etc . She could be all there if we could balance things out somehowand I know for a fact is that the onus is on us and not th doctors ... Cant tell if B! has made a difference yet .

[Erniediaz1018 in reply to mymomhaspd]

Had a difficult time balancing amount of mucuna pruriens because I take 100% from nutrivita in place of sinemet. So I don’t use sinemet but there are folks that use sinemet and a low Extract like 5 % mucuna. Dr C recommended we use B1 in combination with levodopa. It sounds to me like you’re doing fine just have to be patient 🙏

[mymomhaspd in reply to Erniediaz1018]

Does the B1 have to be given at the same tine as the levadopa - we are giving the 500mg twice a day with food .

[Erniediaz1018 in reply to mymomhaspd]

No, does not have to be given with levodopa. I take 4g a day and occasionally back off to 2g a day

[mymomhaspd in reply to Erniediaz1018]

I am giving her 1gm - 500 mg dose - any side effects in increasing the dose ?

[Erniediaz1018 in reply to mymomhaspd]

No side effects, but keep monitoring and talk to her because only she can tell you how she’s feeling. Of course height, weight and age have to be taken into account. I’m 6’2” and weigh 210 lbs @ age 51

[Erniediaz1018 in reply to mymomhaspd]

God bless the work you’re doing. Please feel free to shoot me any questions and I’ll gladly share my experience with you 🙏🏼

[mymomhaspd in reply to Erniediaz1018]

Thank you so much - really appreciate it and god bless

[mymomhaspd in reply to Erniediaz1018]

HI , ERniediaz1018, think the B! has made a diff, so thank you so much for sending on that track . There are times she talks like totally normal, def more than before. I got three days of consistently good energy and i was so happy but yday she didnt talk much . Could also be as she was constipated , side effect of sinemet , still not sure how to incorporate mucana? I did give it with the levadopa but that increased dykinesia . What is ur modality of taking Mucana , can u please share ?

[Erniediaz1018 in reply to mymomhaspd]

I take the 99% levadopa mucuna from nutrivita, so I take that in place of the sinemet. It was difficult to get the right dosage. I bought in powder form and make 500 mg capsules every three hours. It is most important to get blood work doneoften because we are often deficient in one or more important nutrients. That’s what I’ve been doing lately. I’m taking zinc, B1, b6, b12, d3,

[mymomhaspd in reply to Erniediaz1018]

Thank you - how much were you using ?

[jeffreyn]

mymomhaspd said: "she can only take 1/4 of 25/100 sinemet"

I assume you mean that if she takes a dose of sinemet that is more than 1/4 of a 25/100 tablet, she gets dyskinesia.

If the period between doses is currently, say, 3 hours, I would try reducing that to 2 hours (or 2.5 hours), while keeping the dose size at 1/4 of a 25/100 tablet.

[mymomhaspd in reply to jeffreyn]

If we reduce the gap, she will get more levadopa and hence more dyskinesia

[jeffreyn in reply to mymomhaspd]

It's not as simple as that, because levodopa has a half-life of about 90 mins. This means that the levodopa from the first dose is still fading away while the levodopa from the second dose is building up in the bloodstream.

I am in a similar situation. One 25/100 tablet is the maximum I can take at a time without getting dyskinesia. I take one 25/100 tablet every two and a half hours. If I reduce the gap to 2 hours I get peak-dose dyskinesia. If I increase the gap to 3 hours I get off-time.

For me it was a matter of trial and error.

[jeffreyn in reply to jeffreyn]

Note that this is only an option if your mom currently gets no dyskinesia when she takes 1/4 of a 25/100 tablet every, say, 3 hours. If she does get dyskinesia at that dose and that frequency, I think you are running out of practical options with immediate-release sinemet. It's not practical to give her less than 1/4 of a tablet, although there are smaller tablets you could try (e.g. 12.5/50). I think your main options after that are controlled-release sinemet or Rytary.

[mymomhaspd in reply to jeffreyn]

Thank you , will try that soon . !!