Meds not working

My husband age 60 was diagnosed with PD in March this year, he’d been having symptoms for at least 12 months before seeing the neurologist.
He’s been prescribed CoCareldopa since diagnosis but have not had any positive affect on his symptoms which is mainly tremor to left hand. Since March he has had the dosage increased but still not to any effect. He finally go an appointment to see the neurologist but due to me being COVID positive we had to cancel the appointment and have a phone consultation, the Dr appeared to be quite perplexed when I explained that he’s not had any relief, his appetite has significantly decreased, has lost over a stone, lethargic all day and has been having stomach pains. The Dr wants to see him ASAP so am waiting for an appointment, the phone appointment was this morning, we are feeling very worried as to why the meds have never worked, has anybody else had a similar experience? thanks for any advise.

I had a similar experience - and it eventually turned out that I didn’t have Parkinson’s, but something else.

One thing I wish I’d known is that Parkinson’s tremor is not affected by alcohol. I don’t drink alcohol at all, and so didn’t notice that it stops my tremor. It was only after my new diagnosis that I found this out and tried it. I read that 50 - 80% of non-Parkinson’s tremors are affected by alcohol - & mine is affected.

Hi Lemon,
We have half suspected that he may also have been misdiagnosed, yet looking at other neurological possibilities, it doesn’t seem to get any better. Before diagnosis he used to drink on average 3 cans of beer a week, he hasn’t had any alcohol since.

Hi pufflin i take sinemet 100/25 4x a day my medication doesn’t work for me i too have a left hand tremor my consultant wants me to double my meds to 8x a day to try to illuminate my tremor ive asked for beta blocker in my meds but its like talking to my self i was diagnosed in dec 19 i do admit i have a resting tremor but nothing else like some on here i feel ime losing my quality of life through this tremor best of luck with your meds

I tried a little liqueur - a small glass of something that is 17% proof - and my tremor stopped within a few minutes.

Hi again also i drink a few beers on a weekend and my tremor stops when ime drinking and when i sleep

Hi Calv
Must be awful for you not getting any relief from the meds since ‘2019.
Am surprised that you weren’t started on a different brand.

As for the alcohol helping with the tremor, I shall definitely get him to try it…thanks for the tip.

Hi
With sinemet it isnt as affective if you are constipated or eat protein food at the same time protein stops it being absorbed, sinemet is absorbed into the gut and goes straight to the brain best taken on a empty tummy, also needs to be taken at the same time each day, it can take upto 6 weeks for any change especially if you have just started taking it. You may already know this, but not alot of people do.

Hello, re sinemet and constipation. It is definitely a problem if constipation is not dealt with properly. My husband was severely constipated and wasn’t good at all. Spoke to PD nurse and now he takes Movicol every day, early morning. So far it’s been effective. I also give him some liquorice and make sure he has grapes, apples and golden linseeds sprinkled on his breakfast cereal. The spacing of Sinemet plus taking it an hour before food gives best results, but there are times when it’s impossible to strictly adhere to this, especially when going out for meals with others and on holiday etc. Re cessation of tremor with alcohol and Parkinson’s. I have read that a Parkinson’s tremor doesn’t cease with alcohol, but an essential tremor does. Parkinson’s is such a complex and frustrating disease. It’s a constant daily battle trying to keep it stable…

Hi jean my tremor leaves me for a few hours when drinking alcohol i have a resting tremor sinemet doesn’t work on me i have 8 tablets a day for next 6months to see if increase starts to work parkinsonism is my supposed condition but ime not 100% sure no other motor none motor symptoms

Hi Calv, it’s a strange one isn’t it? I wonder if your tremor settles after a drink as you’re more relaxed? As far as I know tremor doesn’t usually occur when sleeping, but obviously I’m only going on what I’ve read and have observed with my husband. It does sound as if you’re diagnosis of PD is not conclusive given you were diagnosed in 2019 with no obvious additional symptoms (non motor or motor) manifesting since then. But it’s such an individual disease and yours may simply be very slow to progress which of course is very reassuring. Hope all goes well for you going forward. Jean

Hello Puffin
You’ve received some interesting replies to your post all of which are valid if they work or are applicable to your husband which, in my opinion is the main issue with meds.

Medication is an issue that crops up frequently here on the forum and there is no straightforward or easy answer. I note your husband was only diagnosed in March so you are probably still feeling your way. You wrote in your post “…we are feeling very worried as to why the meds have never worked” which is entirely understandable. In all probability in the past you went to see your GP when unwell, be given a prescription, get it filled and take the medication as directed and then often within a short space of time your symptoms will subside. Parkinson’s doesn’t respond in such a straightforward way. You will often hear it being referred to as being very individual, we can share similar symptoms but the impact on each of us individually can be very different. Co-carelodopa doesn’t appear to be effective for your husband but I have been on this for several years and do
very well on it. Meds are not an exact science, to me it’s more try it and see what fits. Unfortunately there are no quick solutions as you normally need to take them for a bit to establish their effectiveness. Your husband may need a different drug, but sometimes a change of brand can make the difference or a change of dose or a change of timings etc etc. You’ve done absolutely the right thing in going back to the medical team for review. Hopefully it won’t be
long before your husband is prescribed something that works for him. I’m very aware that this could be seen as a negative post and I don’t mean it to be but Parkinson’s is a hugely complex condition and I would be doing you a disservice if I didn’t highlight one of the most common issues with Parkinson’s medication.
Tot