Always learning

[october61]

Hello Everyone,

Please could you help me to understand Sifrol ER? I am confused about when it can be taken, the information leaflet seems unclear to me, (I was not gifted with an abundance of intelligence).

Should Sifrol ER be taken at one time during the day?

Can Sifrol ER be taken twice during the day?

Does it depend on your symptoms/ condition?

Is it a matter trial and error to find the greatest benefit?

Did you feel worse after taking Sifrol ER?

Parkinson’s Nurse says take in the morning but, Neurologist advised to take before bedtime.

I have taken the medicine (2 x 0.375 mg) at 8:00 pm before going to sleep but, I found it a little difficult to actually fall asleep. I have also tried taking the medicine in the morning at 5:00 am in an attempt to be able to function during the daytime but, the outcome is a little disappointing.

I am also taking Madopar Dispersible which, is not the best choice but, that is what was advised to do, planning to change to Madopar HBS soon.

Could you share your thoughts with me?

Take care everyone 😁

PS; Photo taken a year ago.

Best wishes,

Paul

[Bailey_Texas]

I take mine in the morning so i have the most help during the day.

[october61 in reply to Bailey_Texas]

Thank you Sir.

That sounds like a good choice, may I ask at what time you take the medicine and how much and if you are taking only Sifrol ER?

Best Regards,

Paul

[munchybunch in reply to october61]

My husband took it at night. However, after 2 years we realised that it had brought no benefits at all and it was causing hallucinations and a general feeling of sickness. It was worse than the disease itself . His personal experience was that he came off all the drugs, including Azilect and is now on high dose Thiamine. This has made a massive change in all respects. He is literally a new man!!

[october61 in reply to munchybunch]

I have tried to stop taking the Anti-Parkinson’s medication but, it was so tough however, this was before I heard about high dose thiamine.

There are a few ‘alternative treatments’ now that weren’t around a few years back, it gives a guy hope.

Thank you Mrs. Munchybunch,

May I ask your husband a bunch of questions? I understand if he doesn’t want to.

Paul

[nanster]

I take mine in the evening, it allows the Sinemet I am taking to still be effective the next morning before taking the next Sinemet. The neurologist told me to take it like this and I have had no problems to date.

[RobertoOcana]

I take Sinemet 1 1/2 tab 6 am, 10, 2 & 6 PM. Neuro add Sifrol 0.375 ER once a day (whenever) Started taking at 8 am but changed to 10 or 10:30 to control restless leg that would happens between 1 & 4 am. Successfull.

For insomnia I take Melatonin 1 mg + Valeria around 9:30 - 10 PM and sleep like a baby; wake up twice to pee and go right back to sleep. Wake up at 6am for my dosage of Sinemet and for my morning walk of 45 min.

My pd is mainly control by Sinemet & Sifrol. My worse symptoms of my pd is a férreal constipation & some speech issues. Let's see what's ahead.

Praise be the Lord & St John Paul II (had (pd)..

[october61]

Thank you Roberto, it sounds as though you’re doing pretty good, I don’t take anything for insomnia, I sleep erratically but, I tolerate it.

I am taking Sifrol ER (0.375 mg) at 8:00 pm, I take Madopar Dispersible (not the best solution) every 4-5 hours throughout the 24 hour day. I am still trying to find the maximum benefit for the minimum dose. I have been told to try Madopar HBS along with the Sifrol ER but, I cannot find this medicine here in Indonesia.

I get restless legs at wearing off time and I simply cannot sit still for 30 minutes or so.

God Bless you,

Paul

[pops007]

I apologise for the long delay in responding to your question about Madopar but we have only just returned home from a month-long visit to St Francis Bay without any internet connection. What bliss!

Yes, I have been taking the normal 200/50 Madopar tablets for about 14 years now because none of the other levadopa medication such as Sinemet and Carbilev gave me any relief at all. Twice, over the years, my neurologist experimented by introducing Madopar HBS - without any positive results at all. In fact, my symptoms only got worse as it would almost “freeze” me up completely.

Because PWP respond differently to various medications I can only suggest that you experiment with the Madopar HBS to see if agreed with you or not.

Good luck