Levodopa absorption

having a third trial with Sinemet. It worked well for right leg tremor for three years since diagnosis. Neuro said my brain changed and it stopped working. Tremor came back with depression and anxiety. Mood is much better since Vilazadone added. I’ve been on Neupro patch for 8 months and my motor symptoms have worsened. Neuro at Movement disorder clinic has added Sinemet back to the mix very slowly week 3 and I’m taking 1/2 tab morning,noon and early. I’m looking for tips to help with absorption of levodopa as well as nausea stomach upset and lightheaded ness Ideas for actual meals, when and what to eat, dealing with constipation. Anything that has worked for you I’d love to hear about. Podcasts, websites welcome

[Farooqji]

Vitamin C enhances the absorption. Use 500 mg Ascorbic acid along with each dose of sinemet

[Hidden in reply to Farooqji]

thanks for your suggestion. I take Sinemet at 7, noon, and 5. I eat at least 1/2 after each dose. I should take vitamin C with each dose?

[Farooqji in reply to Hidden]

Yes

[Smittybear7]

magnesium citrate helped me with constipation as well as vitamin c. Mirolax and fiber gave me gas and bloating,but works for others.

[Hidden in reply to Smittybear7]

Thanks for sharing. Miralax gave me upset stomach and nausea. how much magnesium citrate do you suggest and when do you take it. The same with vitamin c.

[park_bear in reply to Hidden]

Sodium or calcium ascorbate is easier on the stomach than ascorbic acid. Both are readily available.

[Hidden in reply to park_bear]

thanks park bear

[gomelgo in reply to Hidden]

Have you tried vitamin c with bioflavinoids?

[Hidden in reply to gomelgo]

no I haven’t. Thanks for the suggestion.

[gomelgo in reply to Hidden]

Also psyllium has been working for me.

[Ashti in reply to Hidden]

- Slowly increase foods with a lot of fibre (only plants have fibre) but especially intact whole grains (barley, brown rice) and legumes like beans and lentils - which have very high fibre. It takes a while for the gut biome to adjust to a fibre rich diet - but if you get on one, especially if you reduce fibre-free food (animal products and highly processed plant-foods), stay hydrated, and walk to keep things moving - that should pretty well solve the problem. Even with Miralax, start with smaller than therapeutic dose and slowly increase so it is not a shock to the gut.

- For nausea a slow start to Sinemet is good, and with meals to prevent nausea. Slowly move dose away from meals once it is tolerated to get more of the dose working. I’d add vitamin C once it is tolerated.

- For light headedness related to Sinemet, make sure you are hydrated, is one tip. Wishing you well on this portion of the journey!

[Hidden in reply to Ashti]

thanks Ashti for your suggestions and taking the time to address my questions

[eschneid]

The B1 protocol has helped me with constipation in the past. My neuro suggested Senna tea which works, be careful how long you steep it as it can be potent. I've had some success with dissolving sinemet and mucuna in 2 ounces of green tea after a meal when I usually suffer and it seems to "get through" easier.

[Hidden in reply to eschneid]

I’ll try senna tea. I assume morning is the best time of day. Thanks

[eschneid in reply to Hidden]

Actually, it says one cup daily preferrably at bedtime. I guess their plan is to start the day off properly.

[Hidden in reply to eschneid]

thank you. Good to know

[gomelgo]

I find that on the days I have a giant salad for lunch, my constipation improves the next morning.

[Hidden in reply to gomelgo]

good suggestion. Right now I’m using Metamucil and lots of fibre

[eschneid in reply to gomelgo]

Hi Mel,Eric from zoom here. Guessing Elaine Benes never had constipation as she usually ate the "big salad". Hang in, it's toughest mentally early on, then you're NY fight will take over.

[RIVERFLOW]

Personally for constipation issues Metamucil and tons of fiber didn’t work. I spoke to 4 different doctors about this problem (including my Neurologist) and they all agreed on stool softeners like Lax-A-Day or RestoraLAX every morning. It works well but you have to take it EVERY morning no matter what. After a certain time you will know how much powder you need to add to your morning beverage. It neither change the taste nor the texture of your beverage.

[Hidden in reply to RIVERFLOW]

thank s for responding. Hope you’re having a good day

[Daisies22]

Hello,I was wondering if I could ask what the strength of the Neupro patch was.

I was diagnosed with PD five years ago at the age of 49. After a year on Pramipexole I was prescribed Neupro, 6mg initially which put me in A&E on the third day.

It's been two and a half years since I've started gradually reducing the dose, which has been a living hell. This medication had a detrimental effect on my motor symptoms.

I would be grateful if other PwP share their experience with the Rotigotine patches.

Unfortunately, I can't offer any advice on levodopa as neither of these meds has ever worked for me.

Thank you.

[Hidden in reply to Daisies22]

I live in Canada on the west coast close to Alaska.started on 1 mg of Neupro early September titrated by 1 mg at a time til 4 mg until January 17th. Noticed improvement to dystonia and mood was maintained as well as intermittent boosts of energy. Then I increased to 6 mg whereby side effects became unmanageable (nausea, dizziness, upset stomach, constipation and fatigue.) and motor symptoms were deteriorating.

I was told by phone consult Feb 6th that I was on a very low dose of Neupro (equivalent to 2?Sinemet and if I went back to 4 mg)

I had an appointment with his colleague at the Movement disorder clinic March 2nd . Was convinced to stay the course on 6 mg and an appointment was made for Botox shots in my feet April 14th . At that appointment I received Botox injections in my toes and sinimet was added to the mix. I’m on week four of that titration and have experienced some relief from fatigue, nausea and lightheadednes , stopped taking miralax for constipation.

I still walk at least 5 kilometres every day and do yoga twice a week, but no aerobic exercise. I’m too dizzy and nauseous for that.

I see the visiting neurologist next week who referred me to the Movement disorder clinic. I live a 2 hour plane ride from the Movement disorder clinic

I am seeing a gastrointestinal specialist May 29th.

I’m not convinced that 6 mg of Neupro is helping.

What were your symptoms when you ended up in A & E? Did they call it an overdose?

What are your symptoms now as you reduce the patch? Do they call it withdrawal?

What a terrible time you’ve had with Neupro. Im so sorry you’re experiencing such trauma.

Are you on any other dopamine agonists or medication for Parkinson’s?

I wish you some relief and would like to hear about any further updates.

Sorry for the long response. It’s hard to believe my experiences have occurred over9 months.

Have you had support from any Parkinson’s association?

Warm regards

Miller 15

[Daisies22 in reply to Hidden]

Thank you for your kind message and apologies for my late response, I was really unwell the last week, I wasn't ignoring you.Below I copy and paste my response to someone else from about 3-4 months ago to give you an idea of what my life on Rotigotine has been. This is just my experience, other PwP have the polar opposite reaction, and it completely transforms their lives.

You mentioned that you live in Canada. What a beautiful country! I spent a year living in Vancouver and I have very fond memories of that time.

Back to your questions:

I was diagnosed five years ago and prescribed Madopar and Pramipexole. A year later my Neurologist decided to replace Pramipexole with Neupro (for no specific reason other than that she didn't like her patients taking too many pills as apparently we forget to take them!). The starting dose was 6 mg calculated on the basis of conversion tables the National Health Service (NHS) had. Within 60 to 90 minutes post patch application I got almost completely paralysed and unable to move even my fingers for several hours. I emailed my Neurologist but she ignored me. The second day I experienced exactly the same reaction and wrote to my PD nurse to tell her that the next day my husband and I were going to A&E and it would be helpful if she comes to see me. She did not. The Neurologist on call that day just prescribed me a higher dose (8 mg) and sent me home. On 8 mg I felt even worse but I was refused a prescription for Pramipexole and my Neurologist was adamant I should stay on the patches and in four months she increased the dose to 10 mg which very quickly made my paralysis infinitely worse. In October I started reducing the dose of Rotigotine. It's been exactly 30 months now and I'm down to 0.75 mg per day. Even at this very low dose my life is a living hell because of the Dopamine Agonist Withdrawal syndrome, DAWS, which affects mainly my motor symptoms, I can cope with the non-motor ones (anxiety, fluctuating pulse rate and blood pressure).

And no, the Neurology did not call the events overdose or withdrawal syndrome, in fact they never explained to me that I could experience any side effects, which is malpractice.

I'm not taking any other dopamine agonists. My only anti-Parkinson's medication at the moment is Madopar and 0.75 mg Neupro.

Apologies for the long message. I hope I didn't take too much of your time.

You are doing exceptionally well walking such long distances every day! Well done!

Best wishes and keep in touch!

_________

Neupro is a dopamine agonist and it is supposed to improve your motor functions.Unfortunately, what this medication does to me is to almost completely paralyse me for hours at a time. I can't move even my fingers and on top of that it makes my whole body shake. The shaking is so bad that I need my partner to hold my arms and legs otherwise the frequency and the amplitude of shaking increase. All this happens every time when I replace an old patch with a fresh one. This paralysing effect and the shaking get milder when the patch starts to wear off. Taking madopar helps counteract the effects of the patch but this means that i have to increase the dose of madopar simply to be able to cope with the effects of this medication which I did not want in the first place.

I was kept on this medication for a year and a half when my Neurologist suddenly changed their mind and finally allowed me to try and reduce the dose I was on. I should say that I've been on every single dose starting at 6 mg per 24h up to 10 mg and then very gradually down from 10 mg to just under 1 mg patch, it took me 26 months to get to 1 mg. Removing the last 1 mg patch proves really difficult - regardless of how tiny the changes in dose of Rotigotine are the withdrawal symptoms are horrendous. That is why I said that it has been a living hell. Because of all this I am not only housebound but wheelchair bound. The withdrawal attacks are so sudden and horrendous that I cannot risk it to be outside so I'm confined to the house and garden, I'm missing hospital appointments, and can't always get to the pharmacy to collect my medication. My pulse rate and blood pressure fluctuate too. Luckily, I don't have mood swings and am okay psychologically.

[Daisies22 in reply to Hidden]

I have not had support from any Parkinson's Associations. In the UK is difficult to see a Neurologist more than once a year. I have not seeing my PD nurse for two and a half years.

Some information I meant to send and forgot:

news.weill.cornell.edu/news...

________________

"Movement difficulty: When used in addition to medications containing levodopa, rotigotine increases the risk of experiencing difficulty starting voluntary movement and can increase the side effects of levodopa. If you experience worsening side effects of these medications, talk to your doctor or pharmacist.

Link: medbroadcast.com/drug/getdr...

[Hidden in reply to Daisies22]

Thank you for this information. Good luck getting off of that final 1 mg of Neupro. I’m sorry it’s been so difficult for you.