Is it safe to increase dose of Co-Careldopa?

[Dobro52]

I have been on 25mg/100mg Co-Careldopa, three times a day at 8am, 2pm and 7pm since I was diagnosed with Parkinson's last June. The medication was effective in restoring my walking (dragging left foot), reducing tremor in my left wrist and hand, and restoring my energy levels. However, for the past week my left shin is stiff, my ankle movement less smooth and repeated periods of left hand tremor through the day. I also feel worn out most of the time. I don't know if this is due to the prolonged cold weather or reducing effect of the medication. I'm tempted to increase my medication to 4 times a day to see if a slight rise has a therapeutic effect. Possibly 8/12/4pm /8pm. Is such a modest increase likely to have any benefit. I'm 68 in otherwise good health, exercising 6 times a week. I'm in the UK. I have a GP, who I'd have to wait weeks to see. I saw an NHS Neurologist, who told me I'd have to go back on the waiting list (5 months) if I wanted to see him again. Not been put in touch with any Parkinson's services. Any advice or information gratefully received. Thank you.

[laglag]

You should talk to your doctor first. Go ahead & make an appointment now to get your appointment set up because by then you'll probably have other questions come up. You could call his assistant & tell her what's going on & maybe the assistant would be able to ask the doctor. It's pretty normal for that to happen though.

[park_bear]

I have not seen any adverse effects reported from the kind of change you are suggesting.

Many of us find high-dose thiamine helpful. highdosethiamine.org/

[MBAnderson]

Personally, I take carbidopa/levodopa as needed.

I am not a doctor and this is not a recommendation, but I don't really understand why there's so much time schedule or dose rigidity surrounding C/L therapy, because some days are better than others and some periods within the same day can be better or worse, so I take the stuff when I feel like it and not when I don't.

If my neurologist had to talk to me every time I was contemplating taking a dose, he might have enough time to see two other patients..

[Enidah in reply to MBAnderson]

Loved your answer MB. Somebody on here called that dynamic dosing and that is certainly what I do. The doctor has no clue what I am feeling or the particular version of this fun disease I have. I educate myself read everything I can and then have a go at the best possible doses according to how I’m feeling. I am very fortunate that my neurologist trusts me and listens to me. And lest it be unclear I also listen to him and get as much feedback as possible.

[park_bear in reply to MBAnderson]

Well said. No one but the patient can tell whether dosage is appropriate.

[Maltipom in reply to MBAnderson]

My MDS told me to play with the carbidopa-levodopa to see what works for me. Everyone's different. But just like you, mine varies from day to day. My adjusting it as needed is what works best for me. Some days I need less than others and some days I need a little more.

[stepan13 in reply to MBAnderson]

the same is here

[johntPM]

In the ideal world you would see your consultant to discuss this with him/her. laglag's advice to get in touch with the assistant is good. He or she may be able to make you jump the queue or to have an over the phone consultation. But, if that doesn't work, given the delay in seeing the doctor, you've got to take control. Your symptoms indicate that you are undermedicated. Before increasing the number of doses: first check that you are taking the doses at a time when they don't interfere with your diet, perhaps a hour apart, to avoid competition with proteins in the food. Second, check that you are not constipated, this affects the amount of levodopa that is absorbed. Thirdly, check that you don't feel dizzy when you stand up (hypotension, levodopa tends to lower blood pressure). One practical concern if you choose to increase the dose would be how you would get a new prescription when your current one runs out early.

[sauerkreut in reply to johntPM]

To my experience, medication is best taken appr. 1h before or 2hrs after food.

[laglag]

I agree, you don't need to call your doctor every time, but because they were recently diagnosed, their doctor may want to handle it a different way. And you want to make sure you have enough meds to get you thru until your next visit.

[Hidden]

It is rather safe to increase your c/l amount, but there is an order in which you should proceed. First determine your proper dose amount and then your dose interval. Adding doses, if necessary, always comes last.

Note that your five and six hour dosing intervals are probably too long...

[WinnieThePoo]

Try to get registered with a Parkinson's nurse. My dad's has been very good. Also you shouldn't have to wait more than 3 weeks for a gp appointment even in the UK. (We are spoilt here in France. )

As others have noted you need someone to prescribe it for you so you need to consult with someone

[AaronS]

I played around with my dosages from the outset, im actually on less than initially recommended but only marginally, everyone is right tho in what they are saying.

[Zella23]

We live in the UK and through NHS my husband sees a Neurologist every 6 months and the GP when needed. My husband has altered his doses a couple of times by himself without a problem.

He has contacted Neuro by email after a Rasigiline medication they gave him caused increasing dyskinesia. They sent a helpful reply.

They always inform our GP as well. She has been very helpful with timing advice and my husband has had a couple of telephone consultations with her.

He has been dx nearly 5 years and if we are having a busy evening sometimes takes an extra half dose of C/L if needed. The half dose has been really useful when a full dose,( the same as you are taking) is too much.

I would suggest contacting your GP or Neuro if you can. It may be they can suggest adding on a different medication that can help, if needed, or suggest timing changes.

[Abepark2013]

Hi , I am 55 , diagnose 7 years ago. Started with sifrol 3mg and then startedCL and now I have one pill 25/250 every 3 hours.

I work normaly , some rigid issues when I sit for hours do to my work.

As time passes the transition period get more noticeable.

Also my energy level some days are very low.

I have an appointment in 20 days,

I will comment after that

Regards

Alberto

[ion_ion]

I'm taking 100/25 c/l 2 or 3 times a day plus HDT, depending how I feel.

I was dxd 3 years ago.

It is interesting to hear about so called socialist health care in UK.

I have health care in both USA and Canada; in USA I can make the same day appt for my GP,

in Canada I can make a week appt or just walk in during his walking clinic hours. For a neuro in USA takes a week, in Canada at least 3 months. But in US you got to pay some money for copay (30usd).

[PalmSprings in reply to ion_ion]

Hi,

Just wondering how you have both US and Canadian medical? And how long in each year you can stay in both places?

I have dual-Citizenship but I am still not sure of the ends and outs. I was born in the US left when I was 14 and lived in Vancouver since. I worked entirely in Canada and retired when I was diagnosed. I like to spend lots of time in the states but I am not sure about the healthcare and what insurance I can buy and how much it would be for my husband and I. I am 60 been diagnosed for 5 years. Can I stay longer than the 180 days a year that I have heard about?

Thanks,

Christie

[ion_ion in reply to PalmSprings]

Christie,

There is a difference between our situations. Actually I have three citizenships , one by birth in EU and two by naturalization (Canada and the latest USA). Officially I live in Canada now and commute to work in USA where I have employment BCBS insurance.

I pay taxes in both countries but Canada gives me credit for the tax paid in USA. Taxes in Canada are much higher for high incomes but I put a lot of money in 401k and RRSP to avoid writing checks to Trudeau. I did it in the past and it was painful (12k a year).

I was dxd exactly 3 years ago and I was at the point to retire but dr. Constantini HDT protocol saved me plus the fact I changed my attitude regarding the PD which is also a psychological disease which can aggravate the neurological component.

I plan to work another 5 years and then writing books about USA with Bernie Sanders president.

[MarionP]

Someone here created an app that calculates how half-life and blood plasma levels distribute and accumulate/dissipate after dose...for numerous PD medications. It may do well to, instead of add to the doses, study that a bit for your med and see about whether re-distributing your current doses across the clock makes any differences good or bad.

If your med is in the app that is great, use it. Take some time getting to understand the directions. I've used it and it works just dandy for the meds it lists.

Your med's pharmacokinetics and pharacodynamics (basically how your body receives the medication and then how the body gets rid of the medication) that are the concern of this very handy app are going to change what your medication does to your neural system of neurons and their respective receptors over time and it is a bit like a long term balancing act and redistributing your times dose and times when your various symptoms change during a dose time so that you can adjust as these changes gradually occur and accumulate...it's like having to check your tire pressure and adjust to different air temperatures, road conditions and load conditions. Makes quite a difference.

Oh here, I found it. You have to read through the directions a while to learn how to use this app. parkinsonsmeasurement.org/t...

[johntPM]

Thanks for your kind words about my app. The main medication that is not covered is Rytary - though if you are keen, you can approximate it.

I would define pharmacokinetics and pharmacodynamics differently than you do: pharmacokinetics is what the body does to the drug; pharmacodynamics is what the drug does to your body. So, for example, when you take a dose of C/L the level of levodopa in the plasma and how it changes over time is a PK concern; whereas the impact that this has on the number of finger taps you can do over time is a PD concern.

[Dobro52]

Thanks everybody for your sound advice and information. It's been really helpful. For the present I've decided to move to 4 doses a day with shorter intervals and monitor how effective this is. I'm on a steep learning curve where I need to understand how the timing and dosage are impacting on my body and the activities I do. I also need to book into my GP and get her to refer me to a Movement Disorder Consultant rather than a generalist Neurologist.

For information, I went to see a Neurologist privately, and got to see him in 10 days. He was very positive and motivating. I did see an NHS Neurologist 5 months later who offered no further contact or referral to local services. Since then I've been in touch with Parkinsons UK and a local PD support group. Both have been very helpful. Meeting all these different people has really shown me how everybody's experience of Parkinson's is unique.

Thanks again.

[Dobro52]

Thank you for your information. I will look up kunime herbs as I have not heard of them before.

[yepyepyep]

thats odd according to the medication your on which is a standard realise medication you should be taking it 4 times a day not 3