My husband was diagnosed a few months ago. He was commenced on Co-Careldopa 25/100, starting on half tablet 3 x daily.
Dosage has been increased slowly over the last few months. He now takes 2 tablets 3 x daily.
He has had no side effects, but also no improvement in his only symptom, which is a rt sided hand tremor.
Is there any hope/point in carrying on?
We hope to see the Consultant next month, but wanted to know if anyone has had an improvement on a higher dose when none has been experienced at 6 tablets daily?
I’m new to this forum.
In the area we live in we have no Parkinson’s specialist team, & our GP says all care must come from secondary care, meaning we only have a Consultant, who is not easily contactable.
Any info gratefully received - thanks.
Good evening Jean5 … I am 70 years old & was diagnosed with atypical Parkinson’s in June 2023 after a positive datscan.
How old is your husband? Has he had a datscan? A datscan is probably the most reliable test for Parkinson’s.
I am also on Co-Careldopa & I find it does help my symptoms. I suffer from gait freezing & mobility problems. I too started at a low dose & am now on 2 pills 3 times a day like your husband.
If your husband is having no side effects to the drug then what has he got to lose?
I’d continue taking them till you see the consultant next month.
It may be that your husband does not have Parkinson’s. Is this possible? Usually a positive reaction to the drug is confirmation of Parkinson’s.
Whenever anyone stops a drug one should ask your medical advisor first as coming off the drug slowly is the best option.
Any questions please ask.
Best wishes
Steve2
Hi Steve2,
Thanks for reply.
My husband is 68, & had a diagnosis after a DAT scan last year.
He will continue the meds, but what I was wondering was has anyone had a positive effect on Co-Careldopa on a dose higher than 6 tablets daily, when up til this point, the medication hasn’t had any effect?
I suppose we both had high hopes, & are feeling despondent having no improvement. He is exercising too.
Thanks
Dyskinesia (abnormal, involuntary movements) may develop while you’re taking Sinemet . Symptoms of dyskinesia may include: tremors (movements you can’t control) head bobbing.
Hello Jean5 … too much medication can cause Dyskinesia. As I said I’d stay on the medication & dose your consultant advised & speak to him about it at your appointment. It might be that one of the other drugs will suit him better. We are all different & have different reactions to the drugs used.
A positive datscan does not 100% mean your husband has Parkinson’s.
Best wishes
Steve2
Thanks Steve.
I was diagnosed with PD in 2017, so am now in my 8th year of taking levodopa-carbidopa (Sinemet). I am sorry to hear of your husband’s diagnosis and that the medication regime doesn’t seem right yet. But I would be VERY cautious about increasing the amount of meds - at all, and certainly by that amount or without a specialist team around you. Sinemet is a potent thing and not to be messed with - when you’re taking it multiple times a day for weeks on end, the ‘possible’ side effects are bound to catch up with you. The list of side effects is, as always, pretty alarming; it includes dyskinesias which can be more troublesome that your tremor, psychosis, hallucinations, anxiety, compulsivity, hypersexuality etc.
Many years ago it was not standard practice to use co-careldopa as first line of medication. I believe a slower acting MAO-B inhibitor like Rasagiline might have been used, which lasts all day and basically just allows the body to use the dopamine it does have more efficiently. But don’t quote me on that.
[Another slim possibility occurs to me is that your husband may have been mis-diagnosed. Perhaps as he is only displaying one symptom that it is resting tremor. not PD? See discussions elsewhere on this forum. Again, I am no expert.]
My advice going forward would be to do as much research of your own as you can so you can be fully informed and ask the best questions when you (rarely) get to see a PD specialist, or get to ask them via email. In the meantime, stick to what you’ve been prescribed - safety first.
I do hope you achieve progress soon.
Also, read the leaflet about when to eat in relation to medication timings - especially your proteins. This can have a big impact on efficacy.
Thanks for reply.
Never intended to increase dose without Consultants instruction.
Probably wasn’t clear in my original post. I just wanted to know if anyone out there had a positive response, after having no response on 6 Co-Careldopa daily. Just hoping that if/ when it is increased again there is still hope it may help.
As Isaid he was diagnosed after a DAT scan.
Thanks
Hi, I was diagnosed in Sept 24 (positive Datscan) and my main symptom is a right arm tremor which is most obvious when I am walking (causes tension in neck and shoulders which is really annoying and painful) but also at rest. I was started on co-careldopa 12.5/50 3 times daily then moved to 25/100 3 times daily which is still having no noticeable effect on the tremor. Its quite frustrating having to wait 6 months between consultants appointments to discuss a change in dosage especially as its well known how difficult the meds are to get right. I have read that tremors are especially tricky to eliminate with meds so has anyone found an effective alternative medication for the tremors without major side effects ? Thanks, Martin
Hi Onslowe,
My main symptom is a tremor and stiffness in my left arm.
Got diagnosed in Nov 24 am on same meds as you.
The meds have helped my other symptoms including stiffness but my arm still shakes, oddly am finding if I can get really relaxed and take mind off illness that seems to help tremor.
When I think about it or get stressed is when it gets worse - once I notice it, It gets worse.
Do find if I am using affected arm/ hand it helps - like holding a bottle of water in it.
When I met the PD nurse she did say that tremors are the most difficult symptom to address with meds.
fairly new to all this so still learning!!
Thanks for all the replies. Helpful just to know that my husband is not the only one having a problem with stopping tremor. Any other tips gratefully received.
Hi JD2024, stress is the biggest trigger for my resting tremor, even the slightest thing sets it off which is embarrassing at times. When working with tools etc my tremor pretty much disappears which is helpful. I am trying a few extra vitamin types to try and help but nothing works so far. Martin
Hi jean5, if his only symptom is rt sided hand tremor and no side effects to the medication then carry on as prescribed until you see the consultant.i was diagnosed 6 yrs ago and although my increased dosage has helped my other symptoms it has not helped my tremor.
If he has Parkinson’s and his only symptom is a tremor then be thankful and don’t worry too much. All the best
Hi Jean. I’m 56 and was diagnosed in 2021. My symptoms got so bad, I could barely move. My wife was having to dress me, cut up my food, help me in and out of the bath and shower etc. I started co-careldopa, and after a few increases in dosage, the change in me and what I was able to do was remarkable. I got my full independence back.
Now, because PD is a progressive disease, meds/dosage needs to be tweaked occasionally. I now take co-careldopa 5 times a day - 2x 25/100mg at 8am, 11am and 2pm. Then at 5pm and 8pm I take a 25/100mg and a 12.5/50mg. Also a 25/100mg Slow Release at bed time. This dose currently helps me lead pretty much a normal, independent life. I also take 1 Opicapone daily to make the co-careldopa last longer between doses. Unfortunately, I developed dyskinesia, which is a side effect of co-careldopa but now take Amantadine to counter that, which I’m glad to say works very well.
So there seems to be plenty of room to increase your husbands dosage and types of meds should the Consultant decide to do that.
Cheers
D
Hi Dusty68,
I’ve only begun taking co careldopa recently currently take 3 x a day. can I ask how long after you started taking the meds did you begin to get dyskinesias and are these a direct side effect of taking the meds?
Thanks
It’s difficult to pinpoint when the Dyskinesia started as symptoms were very similar to other things such as wear off, dystonia, etc. I’d guess around 2 - 3 years of starting it. The obvious twitching and feeling fidgety in my left leg and arm prompted my Neurologist to let me try Amantadine which I’m happy to say is working well. I believe it is a side effect of the co-careldopa.
Cheers
D
Hi Dusty
Thanks for all the info, & pleased you have got the relief you need.
Being at the start of this journey, it’s so kind of everyone to share their experiences, so we can understand the complexity & differences that you all have.
Very grateful for input.
Thanks Dusty