Side effect of Sinemet

[Grandsonlover]

- [ ] I am 70 years old,was diagnosed PD 5 years ago. The first 4 years, I was OK with Sinemet as 100/25, 3 times a day. But from last Summer, after taking the same amount of Sinemet 30 minutes or one hour, my left body got Muscle tightness and serious dystonia of left foot and shoulder until off time. So, Sinemet made my suffering rather then help. However, without it, I can’t walk and functioning. Is any one have the same or similar problem?

[Farooqji]

It's levodopa induced dystonia. It can be subsided by taking low dose more frequently. Vitamin B3 also helps

[Grandsonlover in reply to Farooqji]

Dear Farooqji, thank you very much for your suggestions. I will buy B3 to try. You’re right, I tried lower dose , did help a little bit, but, soon I suffer the offtime after one hour, so, I always rather in dystonia or offtime everyday.

[Gymsack in reply to Grandsonlover]

Talk to your Neuroligist

there are medications called agonists that make your body stop destroying the Dopamine so fast ( I think thats how they work ) any way the CD/LD will last longer so you can take less. New out is a pump that delivers under your skin and smooths out the highs and lows and kicks in sooner .

keep trying you can do it

[Grandsonlover in reply to Gymsack]

Dear Gymsack

Thank you very much for your advice! I will talk to my Neuro doctor about agonists. It seems good for me.

[park_bear in reply to Grandsonlover]

What is needed is a more uniform level of levodopa over time. For starters I recommend adding an MAO-b inhibitor of your choice - selegiline, rasagiline or Xadago. I also found that entacapone helps. Consider carbidopa/levodopa extended release rather than immediate release. Details on that here: healthunlocked.com/cure-par... Rytary is another possibilty.

Read this before pursuing B3: healthunlocked.com/cure-par...

[Grandsonlover in reply to park_bear]

Dear ParPark_bear,

Thank you very much for your kind advice! My doctor did subscribed MAO-B inhibitor, but, I heard that if take it, such other medicines including the medicine for cold would interact with it,. I told the doctor about my concern, then, the doctor subscribed Amantadine instead, but,, Amantadine doesn't help at all. I will ask my doctor of entacapone. Mean time, I am trying to use natural Mucuna Pruriens instead of Sinemet, but, due to taking Mucuna Pruriens needs Carbidopa, I don't know if I can get Carbidopa along prescription. Also, Mucuna Pruriens is Levodopa too, so, it might have the same problem as Sinemet.

From the internet, someone says "this is due to mutations in the gene coding for guanosine triphosphate cyclohydrolase I, which leads to a deficiency of tetrahydrobiopterin", I don't understand these terms, but, may be need take supplement of tetrahydrobiopterin?

[park_bear in reply to Grandsonlover]

Levodopa intolerance of the type that you have indicated is not genetic. It is a result of disease progression. I do not have any context for the internet reference you cited, but it does not fit this picture.

Yes, Mucuna Pruriens is likely to have the same problem as sinemet.

Dopamine agonists are an alternative to levodopa. Be aware they can have serious adverse effects if you choose to go that route.

Fish oil did seem to relieve my dyskinesia, and maybe helped with my dystonia. A low risk intervention that is well worth a try.

[Grandsonlover in reply to park_bear]

Dear Park_bear

thank you very much for your kind advise! I think I will try fish oil @ first. May I ask how much should I have daily?

[park_bear in reply to Grandsonlover]

See this post including the comments: healthunlocked.com/cure-par...

[Grandsonlover in reply to park_bear]

Dear park_bear,

Got you. Thank you very much!

[7springshollow in reply to Grandsonlover]

I took my Mucuna with vitamin c or green tea to help it absorb.

[Grandsonlover in reply to 7springshollow]

May I ask if you only take Mucuna Pruries, or, also take Carbidopa with it? Besides Mucuna, do you take Sinement too?

[Allypally49 in reply to park_bear]

Rasagiline increases the dyskinesia risk

[Gymsack in reply to park_bear]

just a comment about selegiline, rasagiline Xadago: I was allergic to them , heart irregular pounding, try inhibitors carefully and observe

I use Amantadine, no problem . we are all individuals and different

NOTE: people here are giving you advise on medication and supplements. We are not doctors and our personal experiences of taking the medication and supplements is just our experience and we are all different . Talk to a trained and experienced professional .

[Bolt_Upright in reply to Grandsonlover]

I only have a high school degree, but there are 3 or 4 different types of B3. I think fast acting (flushing) Nicotinic Acid is the safest of them. Do some searching and you will see the no-flush and extended release seem to be bad for you (liver?). Anyway, search and you will find info on this.

[Grandsonlover in reply to Bolt_Upright]

Dear Bolt_Upright,

Thank you very much for your kind help, the information for B3 is very important. I don't have any knowledge about it, it is good to know. You are right, extension release seems not good for this kind of problem. I tried Rytary, and it made my problem even worse.

[Fumaniron in reply to Bolt_Upright]

good points. I take high amount of non-flushing niacin with my supplement. I’m going to have to reconsider that.

[Bolt_Upright in reply to Fumaniron]

Make sure you put a good gap between non-flushing and flushing. I saw a story where the combination in the system at the same time messed somebody up.

[Fumaniron in reply to Bolt_Upright]

good points. I think you cited an article in the past about coupling niacin with butyrate. I use 500mg non-flushing niacin for this combo. What do you use for this?

[Bolt_Upright in reply to Fumaniron]

I posted about it but I did not start butyrate. I keep planning on looking into it, but I also try not to grow my stack. Not to jinx myself, but I am feeling optimistic about the things I am doing now.

[Fumaniron in reply to Bolt_Upright]

Ok. I’ve been using it for a few years. Not sure I feel a difference

[JCRO in reply to Bolt_Upright]

This needs more research. The video is complex so avoid if feeling sleepy.

youtu.be/xInw3F2AVTg?si=50U...(Not working as expected?)

[JCRO in reply to JCRO]

youtu.be/0REvBPcoXO8?si=pN5...(Not working as expected?)

[Grandsonlover in reply to JCRO]

Thank you for the info, from the video, 500gm is too high, 500mg = 3125% of recommend daily dosage.

[Bolt_Upright in reply to Fumaniron]

Here is that other post you mentioned: Niacin and Butyrate: Nutraceuticals Targeting Dysbiosis and Intestinal Permeability in Parkinson’s Disease healthunlocked.com/cure-par...

[Fumaniron in reply to Bolt_Upright]

thanks, Bolt!

[Grandsonlover in reply to Bolt_Upright]

For Dysbiosis and Intestinal Permeability, I tried Probiotics PS128 from Bened Life for 3 months, so far it helps for constipation, I hope it gives me more good result, since it says that it is "the 1st Gut-Brain Medical Probiotic. Gut-Brain Bacteria, Gut-Brain Benefits, Backed By Science. PS128 Medical Probiotic: Dietary Support Of Neurological Conditions Such As ASD & PD." It is expensive.

[michelagvolpe in reply to Farooqji]

How much B3 is recommended?

[JayPwP]

Check this out

healthunlocked.com/cure-par...

[Grandsonlover in reply to JayPwP]

DearJayPwp,

Thank you for the info about fish oil and Citicoline, I will consider of this.

[Missy8612]

I’m also having the same issues and I am anxious to read any replies to you. Thank you for bringing this up!