Sinemet Dosage

[Lamadre]

Hi all, I’ve recently been experiencing wearing off symptoms only 2 / 3 hours after taking Sinemet meds. Limbs feel heavy, tremors worse, exhausted as my body is so tense all the time. Sometimes I just try to walk it off, not very successful! The neurologist has upped my dosage to 1x25mg plus 1x12.5mg Sinemet every 3 hours, (previously it was 4 hours). This is bringing me up to max dosage as I also take a CR 50mg when I go to bed.

Any ideas how to cope with the reduced on time would be appreciated. I’m finding it hard to cope with a normal day, and a house move and holiday coming up! I’ve only been on meds about 2 years so it’s a worry they are not helping so much now. I do exercise but recognise I need to do more!

Thanks!

[Jalia]

My husband has had Entacapone added to his sinemet regime to help with the wearing off.

[Lamadre in reply to Jalia]

Thanks for replying. I think that’s what I need to ask for next, I’m just reluctant to add more meds so early into diagnosis (2years).

[Jalia in reply to Lamadre]

Yes, I can see why you are reluctant to add more meds so early. My husband was diagnosed about 5 years ago, although probably had it a few years before. Entacapone was added a year ago. He takes 3 x Sinemet 12.5mg + Entacapone 4 times a day and Cocareldopa 25mg/100mg at night.

He doesn't have tremors but his balance is getting much worse as well as panic/anxiety attacks. Its all so awful isn't it ?!

We just had a few days away, splashed out on a 5 star hotel . Amazing place but rather spoilt by husband managing to fall out of bed at least once a night so very little sleep was had ! The day we returned(Sunday) he fell over in the house , cut his arm...blood all over the place....and couldn't get up. It was a paramedic call out.....fortunately came quite quickly.

I hope you get some help with your meds. It's all quite a delicate balance to keep some in reserve.

Best wishes

J

[Lamadre in reply to Jalia]

Sorry to hear your husband has had such a bad fall and the difficulties on holiday. My balance isn’t affected (yet!) and I haven’t lost my sense of smell, it’s strange the differing range of issues people suffer from. Stress and poor sleep make my symptoms worse so moving house could be a factor! I’m moving to a different part of the UK so will need to find a new neurologist, hopefully with a more holistic approach and less pills.

Thank you again for taking the time to reply, it’s so helpful to be able to have a discussion with someone who understands the problems. All the best to you and your husband.

[LindaP50 in reply to Jalia]

Hi. Sorry to hear about your husband falling and having panic/anxiety attacks. As Caregivers we deal with situations, look for better solutions or prevention methods and then move forward. Doctors will ask how many times has your husband fallen in the past few months. My response is I can tell you about the last few days but if I were to keep track of all the falls I would be the one with anxiety. We find it best to be aware and move forward.

Jalia, look up Parkinson's and anxiety on Health Unlocked and on reputable websites. Might want to try Mannitol Balance for anxiety (can also help with facial masking and apathy). Also, for anxiety try music therapy, meditation, tai chi, exercise (any kind), Zen coloring (digital coloring with music in the background), 15 minutes of alone time, and once a day have hubby write down all his worries then throw the paper away. All of these are good for the Caregiver as well.

[Jalia in reply to LindaP50]

Thank you so much for your helpful reply. I'll take on board your ideas. He has very recently engaged with a psychotherapist for his anxiety/panic attacks . He does short bouts if exercise each day on treadmill, exercise bike and punch bag. I like the idea of writing down worries etc and will put that to him!

[Jones2023 in reply to Jalia]

Heb 0,5 mg lorazepam per dag toegevoegd. Werkt bij mij super!

[davidhmtk]

Exercise hard beginning 10-15 minutes after taking pills. i feel better after hard exercise ( I take a spinning class, but any simple activity done to your max should work).

[michelagvolpe]

Try to take Sinemet very far from proteins and food in general.

Try to stop eating gluten.

Try to take vitamin B complex.

[MellowYellowcup in reply to michelagvolpe]

agree GLUTEN removal = revitalise U….test it

[Payparky]

DBS surgery has been a great experience and has helped reduce meds.

[LAJ12345]

Try taking the extra 1/2 doses half way between the full doses. That should even out the humps in the cycle.

[LindaP50 in reply to LAJ12345]

Hubby has increased fatigue and falls. Neurologist upped his dosage of C/L 25/125 2 tabs 3x daily to 4x daily. I'm testing out the best time to take - kind of tricky to take and not interfere with protein at meals. Gave him 1 extra dose 2.5 hours after his regular dose at lunchtime. Was planning on doing this 2x during the day but haven't figured it out yet. Mostly because we do not eat meals at the same time every day, sometimes an hour earlier/later.

[mrmoto]

Hello and welcome. I have had Parkinson's Disease since 2011. Sinemet is not an easy drug to manage. I take three of the 25/100 tablets four- times a day. I also take Primepaxole three - times a day and Amantadine twice a day. These are dopamine agonists that assist with maintaining levels of dopamine. I have tried Entacapone with no success. Finding the right combination of drugs is a balancing act, best managed by professionals. I still struggle with this problem. Please consult a qualified neurologist who is experienced in handling Parkinson's Disease medical issues. Where I live there are few.

May the Lord bless and comfor you and your family.