Titrating down on Sinemet experience - Cure Parkinson's

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Titrating down on Sinemet experience

Missy0202 profile image
25 Replies

I wanted to post my experience titrating down in case it helped someone else who was trying to do the same thing. I was originally prescribed 25/100 3 tablets per day (sinemet) 2 years ago. RH tremor was my only major symptom at that time. After 2 months of nausea, my body got used to the drug and my tremor disappeared. Bouts of stiffness in my right leg and arm came on within a couple of hours after taking each dose, which rectified with time and without taking more meds. I wasn't sure if those bouts of stiffness were too much, or not enough Levodopa. I was hoping it was too much..... I began titrating down ½ pill at a time for months noticing improvement when I took the equivalent of 2 pills per day rather than 3. I kept going to see what would happen at 1 ½ pills then 2 x ½ pills. I was surprised that even at 2 x ½ pills I wasn't experiencing increasing symptoms. Until one week into that dose (about a month after beginning the titration), my tremor reappeared at 100% and didn't stop. I consulted with my neurologist who recommended taking 10 days plus to titrate back up to my comfortable dose, which is likely going to be 2 ½ pills. So if you are titrating down, the symptoms dont slowly come back... they may smack you in the face one day without warning, so precede with caution!

25 Replies
johntPM profile image
johntPM

Thanks for the detail.

A slower titration can be done by changing only one dose at a time.

I explain the sudden return of tremors when you're titrating down as the reverse of a commonly found effect when titrating up. Namely that with upward titration to begin with the higher dose makes no difference until you cross a threshold where there is a sudden improvement.

Seamus6 profile image
Seamus6 in reply to johntPM

Exactly. My Neuro explained to me that people can take up to 90% (or thereabouts) of their therapeutic dose with virtually no impact on symptoms.

Grumpy77 profile image
Grumpy77

Thanks for that info on titrating cl based on your experience

An unrelated question... since you are genetically LRRK2 positive, does this mean you were bound to develop PD and there was no way for you to avoid it no matter how much you improved your lifestyle?

Missy0202 profile image
Missy0202 in reply to Grumpy77

My father passed on the gene. There are 4 girls in my family, and I am the only one who developed PD. My 3 sisters did not want to know whether they carry the gene as well. The genetic counsellor said there is a 30% chance that an offspring will inherit the gene, but that does not mean it will develop into PD.

Grumpy77 profile image
Grumpy77 in reply to Missy0202

Ah ok. I can understand why your sisters prefer not to want to find out. If I were in their shoes I'll do the same

So it's just like inheriting from ss + aa, there was 25% chance of inheritance by offspring, which may or may not develop to sickle cell sickness

Thank you

in reply to Missy0202

Missy, where did you get genetic counseling and testing. I’m finally ready to. It’s been an emotional process.

Missy0202 profile image
Missy0202 in reply to

Are you sure you want to go down that rabbit hole? When I was diagnosed, my neurologist asked if I wanted to find out if I had the gene. My father and his father had PD. My mother's mother had it as well. The testing was done through the movement disorders clinic I am a patient of in Toronto. I was also tested through the MJFF's partner at Indiana University, When I tested my father, I bought the 23andme kit and it was simple

kevowpd profile image
kevowpd in reply to Missy0202

There are some targeted therapies coming into view. Slowly. So doing it probably makes sense. That said, I haven't done it.

Missy0202 profile image
Missy0202 in reply to kevowpd

Targeted therapies?? Are you referring to Denali?

kevowpd profile image
kevowpd in reply to Missy0202

I wasn't. park_bear mentioned that a certain type of b12 was potentially more beneficial in lrrk2 people. And there was ambroxol for GBA.

Which mutations you have could actually inform treatment if you are willing to do some educated guessing.

Missy0202 profile image
Missy0202 in reply to kevowpd

I am taking Adenosylcobalamin B12, which is the recommended form of B12 as per park_bear

kevowpd profile image
kevowpd in reply to Missy0202

Well there you go!

in reply to Missy0202

Maybe I’m taking the wrong B12. I take Jarrow brand methyl B12. Which one do you take? Have you been tested for MTHFR genetic variations? It effects methylation.

I don’t want to know my genes. But maybe it will help me make better choices, or not.

park_bear profile image
park_bear in reply to

See comments to this post for details on B12:

healthunlocked.com/cure-par...

kevowpd profile image
kevowpd in reply to park_bear

What's with the bottom comment? Was the 'link' in that comment then edited out?

park_bear profile image
park_bear in reply to kevowpd

Hmmm. Dunno. Had not noticed it before.

in reply to park_bear

Thank you Dr. Ben Lynch has a great book.

Missy0202 profile image
Missy0202 in reply to

I take this one seekinghealth.com/products/...

Missy0202 profile image
Missy0202 in reply to

I haven't been tested for MTHFR genetic variations. How do you get that tested??

in reply to Missy0202

I will find out and let you know asap 😊

Missy0202 profile image
Missy0202 in reply to

lifeextension.com/lab-testi... I am testing using this kit

Godiv profile image
Godiv

I was tested through my psychiatric nurse practitioner. She’s retired now. If you and CC can’t find the test I’ll see if I can find mine, which showed some mutation or one of the factors. I’m not sure how that works. I ended up taking methylated B. I think it helps a bit terms of energy.

Missy0202 profile image
Missy0202 in reply to Godiv

That’s so interesting! Thank you!

Godiv profile image
Godiv in reply to Missy0202

You're welcome! I ended up taking a supplement from Methyl Pro; they're online. I ended up using any old form that's methylated, so that may be I don't feel much now :(. But the "pro" supplements get so pricey.

ddmagee1 profile image
ddmagee1

Tell me about it! It happened to me!

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