I’m so new to PD that I’ve not been officially diagnosed yet but my GP has offered me L-dopa. I’m a concerned about starting on meds before I really need to because of their time limitations. I’m suffering from migraines and fatigue and it maybe that meds will alleviate these symptoms but I’m wondering if, in general, meds reverse symptoms such as the tremors and slowness of movement, or whether they would simply hold back the progression. Do I start meds now to get the best out of them or hold off til I really need them? Quite a dilemma.
Hello broonerz meds i started meds after 12 months i have left hand tremor i think it upto you to decide when, everyone is different, i take sinemet i started on 4 a day over a couple of weeks then reduced to 2 a day now on 6 a day but sinemet 25/100 does reduce my tremor but it will never go away even with DBS i can live with this ive accepted i have a type of mild parkinsons no such side effects i get on with life been diagnosed since dec 2019 ime good it takes a while to sink in i told everyone at work support is great read on this forum it helps ,cal
Thanks for your reply Cal. PD seems such a vague diagnosis but I’m so glad that you have a mild version. Good luck to you.
Hi @Broonerz,
I can understand that you have a lot of questions right now, and there are a lot of uncertainties and unknowns in front of you, but it’s okay. It will take time to understand Parkinson’s better, your symptoms and progression pattern, and what works and doesn’t work for you. That’s also why we’re here, and why I’m glad you’re asking these questions and connecting with others - because you do not need to figure out all of this on your own.
Regarding your dilemma of whether or not to delay drug treatments, I highly recommend reading our magazine article on the subject here. It will definitely answer some of the bigger questions you have.
We also have info sections on Parkinson’s medication as well as their side effects that are quite informative and will speak to L-dopa in greater detail. Our support and information pages can give you a lot more insight into Parkinson’s as a whole too, so please do keep them in mind.
Lastly, you also have our helpline on 0808 800 0303 at your disposal for any questions or concerns that you might have. They are absolutely invaluable, and just like the Forum and its members, we are all here for you.
Best wishes,
Joy
Forum Moderator
Thank you for your reply and I’ll certainly read the magazine a suggested.
Stephen
In summary, there are no Parkinson’s (PD) pharmaceuticals which affect the underlying disease, that is, slow, stop, or reverse the progression. They only provide some relief from some symptoms a few hours at a time and often with disturbing side effects, so our first and most important decision is whether to take PD pharmaceuticals at the time of diagnosis or when our symptoms interfere with the quality of our life. There is not consensus on this.
Most people with Parkinson’s (PWP) a few years after diagnosis take prescribed Parkinson’s pharmaceuticals, consider them essential and are well served by them. While I am supportive of other’s decision to take prescriptions, I’ve decided to delay taking drugs for as long as possible.
In other words, for me, the jury is still out on the long-term consequences of carbidopa/levodopa.
All the major Parkinson’s organizations acknowledge PD pharmaceuticals, long-term, become less effective and troublesome. Some of the metabolites of carbidopa and levodopa are damaging and can induce both dyskinesia and dystonia. I believe that delaying pharmaceuticals will allow a person to start at a lower dose than what they would be taking had they started at the time of diagnosis. Whatever are the consequences of levodopa and other PD drug therapies, those will occur that much later.
Hi Broonerz i was diagnosed with Parkinsons in 2010 and at first for 6 months i would not take any meds. Allso you do say that you have yet to offically diagnosed. When I first went to see my GP with a tremor he did not give me any meds he just refered me to the specialist. Then after it was confirmed i was placed under the care of a pd nurse, she respected my chioce of not to take any drugs. When i started on drugs it was called Ropinirole or Requip First I went on to 2mgs then each time I saw my nurse she would ajust my meds to suite me.Other drugs have since been added. At the moment I am leading quite a normal life, allthough last year i had a disagrement with a concret slab, (Guess who won) since then mobilty is getting an issue. I had to stop doing Tai Chi / Linedancing/ I can know longer swim all so had to give up playing bowls. My brother wno has allso been
sorry presed enter to soon
Amyway .to answer your q. disscuss it with your GP or nurse but I myself will think that you know yourself when you have to take them.