Sinemet dosage

Dear all
This is the first time on the Forum so please forgive the quality for now.

I have had Parkinson’s for five years now. So do have a good deal of understanding of the treatment available. I am struggling at the moment with being off and on. I am taking Sinemet Plus 25 mg /100 mg plus seven times a day, also 1 Safinamiide per day and I have a Neupro patch . However, I will have at least two off periods a day feeling very weak and slow.

Is this just the disease progression or should I request a different drug treatment?

Any advice or experience I can share will be welcome.

Ian Callow

Hi @Ianc and a very warm welcome to our friendly forum.

I’m sure you’ll receive helpful responses from other members, but I just wanted to make you aware of the Parkinson’s UK website which you can find here. There’s a lot of useful information about different topics relating to Parkinson’s so do explore in your own time. You may find this section on medications especially helpful.

However, I would strongly recommend that you contact your GP regarding your medication. If you’d like to speak to a Parkinson’s nurse, an adviser from our help desk can arrange this for you. Just give them a call on 0808 300 0303.

Best wishes,
Janice
Moderation Team

Ian, you are in similar boat to me. My off periods seem to last for 1-1.5 hrs. I am 6 yrs diagnosed , aged 56, and very similar medication…I think the experience of yours and mine is typical. All I will add is that eating protein guarantees that I get the ‘off’ period, and by staying free of all protein, plus drinking masses of fluids, I can keep switched on. It just means I have to often live with hunger in my day v best

Hi William
Thanks for the advice . I will try eating less protein and I must admit I don’t drink much water. I’m 65 and when feeling normal, fit and enthusiastic. I’m still working although part time 3 days a week, so trying to control the off periods is my priority.
Good to talk to someone who understands.
Ian

Yes Ian, given that you’re still able to work,take it from a man who is 9 yrs younger and felt he had to retire a year ago…You are doing great. I hate the off periods, like ‘right now’, when I am gripped with unilateral tremor and even typing ( let alone holding) on an I-pad…is very difficult …If I were you I’d not touch proteinon my ‘work days’, until they were finished. I’d live on bananas and cups of low fat milk tea ! Stay smiling :upside_down_face::slightly_smiling_face: Happy NewYear

Hi @Ianc & @William
I was concerned worried about my off / on time and was desperate for my own sanity to remain in full time work. To help me I was prescribed Sinemet CR 50mg / 200mg (x4 per day) this has helped and has also aided the muscle stiffness upon waking making it just a little bit easier getting out of bed and downstairs first thing in the morning.

I have been taking them along with Sinemet 25mg / 100mg (x3 per day) for about 2 years now dosage increased slowly over that time as originally it was x1 Sinemet prior to bed time but now x4 per day.

Hope this helps John :sunglasses: