Hi, I’m 55 and was diagnosed last week. I was put on pramipexole. I am in the early stage of PD, sometimes I have mild symptoms. I’m worried about having to take pramipexole when I’m feeling well in my current state and I’m asking myself isn’t it too early to start meds? Could you please share your experience.
Welcome to the forum, Sanya. I notice that you are waiting for our friendly members to jump in and talk about their feelings on medications so I’m jumping in while you wait.
Many people find taking a medication for the first time to be somewhat scary. If you’re feeling well, then you will certainly question how important it is to you at the moment. Have you shared these concerns with your doctor? They may be able to explain why you are taking it at this early stage, what they hope it will achieve, and whether you could delay taking it. It’s a big decision and deserves as much discussion and consideration as you need.
In the meantime, I’d encourage you to read this page, which explains the role pramipexole, a dopamine agonist drug, has in Parkinson’s even in the early stages.
Welcome again and we look forward to learning more about you,
Janice
Forum Moderation Team
@Sanya, and welcome to the forum.
As more replies come in you will get a variety of response and suggestions and they will offer different advice I am sure. But just like anything to do with PD you will quickly learn one size deffinetly does not fit all.
I deffinetly believe in my case the early start of taking mmedication allowed me to have nearly 5 years of extra working time. This was so important to me as I was determined not to let Mr parky rule my families life.
During This time we had as many family adventures and holidays to build lots of happy memories. It also gave us as a family time go work out how we would manage financially in the future.
I was 54 when dx and I ended up taking ill health retirement when I was 59 years and 3 months old. I know, (and especially now with the cost living isues), not everyone will be in a finacial position we were. Before ill health retirement we were able to plan for the future with a reduced income and start planning how to make the adustment of working for 44 years in to a lifd of not working.
We decided to move and downsize to be nearer our grown up children and their families, which had lots of benefits including some of my caring needs would not all fall on my wife who is still working 4 days per week.
As I said at the start this will not work for everyone, however I do stand by the fact that early intervention of medication gave me 5 more years at work and sufficient time to come to terms as a famiy with mr parky and to plan for the future. By this I don’t just mean the financial side, but also with the fact that I would retiring which in its self is very daunting.
Sanya, I hope my ramblings do help in someway and I wish you all the best for your future journey with mr parky in your families lives😎
Hi Sanya,
We are different and no decision on whether to delay medicines is right or wrong but this is my experience.
I first started getting PD symptoms almost four years ago - a slight tremor - that got worse and worse so two years ago I went to my GP and eventually got a diagnosis from a DaTScan about eighteen months ago. Because of a local problem where my original neurologist unexpectedly left I didn’t see a neurologist until a year ago. He prescribed me Sinamet but because I don’t really don’t like taking medicines I asked to delay it. He was happy with this but gave me this advice which I think is good.
“If PD is interfering with your life and stopping you doing things then you should take medication. Otherwise you may lose the ability to do those things and not recover them once you start taking medication”
I also declined medicine six months ago during my first appointment with the PD nurse but during the past few months I have started getting ore symptoms my foot is dragging a bit and I am getting an ache all down my right side especiAlly after exercise. So I am now ready to take medicine and hopefully will have my first dose on Wednesday.
I am retired. If I had been working I would have taken medication when it was first offered to me otherwise work would have been very difficult.
If you decide not to make medication I would suggest that you get yourself in a position whereby you can start any time you want and not have to wait until your next consultation. So you are ready if your symptoms suddenly get worse.
The other thing I have done is in preparation for taking medicine I have started a spreadsheet. This contains a record of my daily exercise and also of my main symptoms. Tremor I get this every day, Foot drag not every day, digestive problems not every day, absent mindedness or forgetfulness not every day. I am hoping that if the medication works I will see some of these symptoms disappearing or becoming insignificant or less frequent and I will be able to see this from the spreadsheet.
Anyway good luck. I hope this makes sense . If not I can only blame my lack of mental clarity which seems to be part of myPD and sometimes makes me spout nonsense.
Mark
Hi,
Thank you for the warm welcome.
The last time I visited the doctor, I wasn’t ready to ask questions because I knew very little about PD. Since I was diagnosed, I started learning about PD, the different medications and how they work. As far as I understand, dopamine agonists only treat the symptoms and do not affect the progression of the disease. At the same time, they have many side effects, especially if a person has been taking drugs for a long time. I am particularly concerned about mental problems because I am still working and have many years until retirement.
I will, of course, discuss this with my doctor, but I want to know if anyone else has the same thoughts.
Right now, I am increasing the doses and feel sleepy and nauseous.
Thank you all for sharing your experience. It is very useful.
Sanya
Hello Sanya,
This is my first posting and I too am 55 and was diagnosed 3 months ago by a neurologist, I saw privately, after PD was suspected by my Osteopath and GP. I am seeing him again on Tuesday for my first review, under the NHS system. I am very fortunate that he is head of neurology at my local hospital. At my initial consultation, he said that he wouldn’t prescribe drugs yet and to increase my exercise and include lots of antioxidents to my diet, as I was in the early stages. I didn’t question him at the time as my head was reeling a bit from the news that I had PD. This sounds very bizarre, but I was relieved he told me it wasn’t MND, which my brother has. I have decided to ask to take some medication as my symptoms seem to be worsening. As my appointment, back in October, was wrapping up he said I would probably need to go on some different drug than usual as I had a melonoma removed 6 months ago. Thanks to you, I will ask about side effects to any medication I am given. A question I hadn’t written on my list, but one to add. Good luck and I hope the side effects settle soon.
Del
Hi Del,
We just wanted to say hello and welcome you to our forum community. We’re happy to hear you were able to schedule a consultation and that you are pleased with your doctor. It is no easy thing to decide when it’s best to take medication, but discussing it with your GP is the right approach. We just wanted you to point you toward some helpful information on our website here, and also to make sure you are aware of our free and confidential helpline which is staffed with friendly and knowledgeable advisors who are able to assist with a variety of needs. They are on 0808 800 0303. Please do reach out to them even if you just need some advice.
Wishing you the best and our warmest welcome,
Jason
Forum Moderator
Thank you Jason.
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Hello Delski67
As you will have gathered from previous posts the whole area of medication is something of a minefield, what suits one won’t suit another, a change of brand, a different dose, changing the timings and so on can all make a difference. In general my own rule of thumb is that I don’t want to take more medication than I need and that is defined by what I regard as a good quality of life for me. Yes there are all sorts of arguments for and against starting medication ‘early’ but for me that is not the issue. To me there is no point in delaying on the basis that may be detrimental in the longer term if my quality of life is affected now. There are no guarantees that delay now will be beneficial further down the line, so I take the view that I will do what I need to do now to have the best quality of life and address whatever issues my unknown future may throw up at the time. After all it may be that I would have been better not starting meds so quickly, equally it may be that my deterioration continues to be slow and not too steep but I would have missed x good years because I refused meds. At the end of the day you have to weigh up the information you are given, against what you know of yourself and what’s important to you and the you pays your money and take your choice. By all means ask questions and seek advice as you will, I would always discuss medication issues with my medical team, but ultimately the decision can only be yours and be one that you are comfortable with. That can sound scary when newly diagnosed and used to going to your GP when unwell, being given a prescription, following instructions and in a short while expect to have recovered. However you know yourself and you will learn to trust and have confidence in your judgement and that allows you to have a voice with your medical team. You can only do what feels right for you when it feels right for you having taken advice, information or whatever you need to make that decision. It can take a bit of getting used to but is very empowering. Just a final word the list of side effects on almost all medication can look absolutely horrendous, don’t let that stop you giving something that may help a try. You may not get any side effects at all.