Why are the meds not working

My husband is 47 years old, two years post diagnosis. He currently takes Co-careldopa 3 times a day with an increased strength dose in the evening, he also takes Pramipexole and Entacapone. Despite this regime he experiences little relief or ‘on’ times. Certain foods can switch his food off immediately. I just wondered if anyone else takes the same meds and what their experience of is or whether this sounds like a normal regime. His PD has not been diagnosed with a DAT scan just be the neurologist watching him walk across the waiting room. I feel very helpless. A spectator watching our lives unravel bit by bit unable to stop it. Any advice would be much appreciated.

Hi,

I don’t have answers for you but didn’t want to read and run as only having joined this forum under a month ago I have noticed it"s not a very active forum

My 53 year husband was diagnosed almost a month ago and put on 2mg of Ropinirole. So far it has made no difference to his symptoms. If anything it has made the tremor worse.

Hope you get some answers. I am amazed how many diagnosised youngsters are on this group.

1 Like

What times does your husband take tablets as you have 4hr windows my wife brings my medication up at 8pm switch on about 9ish 1.25mg sinemet with entacapone also azilect so I take 10.30am boost 62.5mg then my next 12pm 1.25mg and entacapone, then 2pm 62.5mg 4pm 1.25mg sinemet & entacapone 6pm 62.5mg sinemet 8pm 1.25mg sinemet & entacapone 10.30pm slow release sinemet. I’ve only added my 62.5mg as keep me on most day wearing night time 9.30pm so I go to bed watch bit tv and I can still move.ive had pd 15yrs reckon 5yrs before diagnosis so 20yrs I have deep brain stimulation fitted Bristol 8yrs that was the game changer without that I could not function thanks southmead hospital totally asleep the operation.
.

1 Like

Thank you @Lizzyg, yes I can’t get my head round the age some people are diagnosed. How are you coping? It’s not just the person with the condition who struggles. It’s difficult for those around them.

Hi again momyali, I’m not too bad about the diagnosis to be honest, I think that is because I was expecting it though. I am more suprised looking back how long my husband has probably had PD, it seems it has been some years. You can definitely tell it is a slow progression disease with the symptoms. I am just a little sad at times for my husband because he was really hoping the medication would kick in straight away with the tremor in his hand. If anything it has made the tremor worse and I know he is frustrated. He is only on 2mg of Ropinirole for the first month but the dose will go up to 4mg at the end of this week. Hopefully there will be some improvement but not getting over excited just in case it doesn’t work. I am aware it is trial and error until we get a balance.

Thank you for asking. How are you coping?

my wife dx at the age of 36, first tremor in the 8month of pregency.

1 Like

Thanks @gus
My husband takes his meds at very similar times. He has no tremor at rest only very restless legs and bradykenesia. His meds wearing off seems to be related to diet more than anything. He’s so bad when his meds wear off he can barely move a step. He stopped driving as soon as he was diagnosed. Hope you are managing ok since DBS. Many thanks for taking the time to reply.

Like you I’m doing ok and again expected it. My husband’s legs gave way suddenly on two occasions before his diagnosis and while the gp put it down to stress and leg pain I pushed for a second opinion and actually said out loud to the gp I think he has PD - I had been googling as you do - or shouldn’t do. We have good days and bad. We have 3 children who have been great throughout. Taking each day as it comes.

@Mikey.inc
How is your wife doing? How are you and your child/children. I can’t imagine what that must have been like at the time. I haven’t been on the forum as much as I would like recently but whenever I return I’m encouraged and find so much strength in how people deal with their lives post diagnosis with so much strength and grace. Hope you are doing ok.

Momyali I guess you start to accept you will have good and bad days, definitely best to take each day as it comes. How old are your children? We have an 18 year old son and a 16 year old daughter. For months they have been concerned about my husbands tremor but now we know why he has a tremor they understand more…

I Did want to add I too feel very encouraged by the positive stories I have read on the forum from the PD sufferers. I am a great believer of being positive in any situation that is thrown at you. It makes a massive difference in how you cope with the disease. Thankfully my husband has the same mindset. He will not sit and wallow which don’t get me wrong I totally understand that could be the case for some because getting your head around a diagnosis like PD can be devastating. My husband will not let anything including PD beat him. I do love that in him and it has over the years rubbed off on me. I feel that is how I have coped with my husbands diagnosis myself. We are both seeing it has a great opportunity to get fit. During the pandemic we have both got lazy when it comes to fitness. Sitting watching too much Netflix and eating junk. We are both working together to do our own fitness sessions, that includes more walking which gives us the opportunity to have nice chats. We have both noticed how exercise has a huge impact on your mental health.

It is a rubbish diagnosis but it doesn’t have to ruin your life.

1 Like

@Lizzyg That’s a great approach. Definitely agree with you. This terrible disease takes enough, we’re not giving it our positivity. My children are a similar age to yours - eldest just turned 19, a 16 year old and my youngest is 10. They’ve dealt with it amazingly. They are my strength.

Your kids sound great. I’m not too sure my two totally understand the disease. We have explained what Parkisons is, just not too sure how much of it they took in.

1 Like

l was diagnosed in 2005 aged 54. I was advised by the neurologist not to go on the Levadopa drugs (such as Madopar or Sinemet) for 5 years because their efficacy lasts about 5 years so that the medication would be effective until l was 64. The Mayo clinic in USA which l visited in 2007 had the opposite view and advised that l went on Levadopa straightaway to improve my quality of life. l cannot remember what dose l went on but it was very low and it didn’t seem to have much effect. I then spoke to a friend of my sister who is a neurosurgeon in Bristol. He agreed with the Mayo but said the dose l was on was sub-therapeutic and that l should double the dose. l did and, within a week, l felt like Superman and l cannot describe how thrilling that was. l was also on Mirapexin and Azilect and that continued until about 2013 when l began to freeze. l then had DBS in 2014 which stopped my tremor and the freezing. l still drive and l’m fairly mobile. l realise that every PD sufferer is different but my advice is hit it for six and to go on a higher dose of Levadopa and also ask your GP to refer him to Dr Patricia Limousin at the NHNN Queen Square London with a view to your husband having an assessment for DBS.

2 Likes

Many thanks for your reply @TimA. Very helpful indeed. My husband has stopped driving altogether, immediately post diagnosis. His meds can wear off suddenly and we both agreed it would be too dangerous for himself and others if he was behind the wheel. Life has taken a strange turn. We used to do everything together and now I can’t remember the last time we even went to the supermarket together. He refuses to see his consultant in person and sticks to phone appointments. There is a lot of OCD too. Just trying to take each day as it comes. I actually don’t know how we all get by sometimes.

Hi again, just trying to get an understanding of your situation. Why is it you have stopped doing things together, is it your husband not being up to doing things? Sorry if it sounds like I am prying but I really am just interested to hear other people’s stories.

Hi i’m Gary i’m 54 and was diagnosed with Parkinson‘s two years ago might you neurologist it’s Professor limousine I’m taking Sinemet 1 1/2×125 six times a day I’m waiting to do something called a leopard over challenge

Sorry for the spelling mistakes I meant to say my neurologist is professor limousine and I’m waiting to do something called a levodopa challenge this is the first time I’ve replied to a post got a bit nervous can’t stop shaking now

Hi Gary, well you have got your first post over with, it’s a great start. What is, the challenge you will be doing all about?

Hi LIzzy I was a little bit emotional when it was explained to me and didn’t take it all in I think you go there unmedicated and I they test you With a big dose of levodopa I think