Was diagnosed Jan 6 put on pramipexole. D... - Cure Parkinson's
Was diagnosed Jan 6 put on pramipexole. Don't really think it's doing anything.Thinking about getting off it and take nothing. Any thoughts?
Hi Casper. Diagnosed 2 yrs. Been on pramipexole a1 yr. Felt not much difference but gained weight, swollen feet and ankles, breathlessness and a general feeling that all was not well. Gradually weaning myself off and PD symptoms no worse. I think for me it's side effects outweighed any benefits. It's starting to dawn on me that agonists mask symptoms and for me don't work. My Neurologist thinks the answer is to go onto Levodopa. I am reluctant, although I hear it should improve my quality of life, but at what cost to my long term health. It is a quandry and I find myself unable to make the decision. I suppose I have no choice really PD forces you to deal with so many choices and because every case of PD is unique we all have different experiences and stories to tell. I too am tempted to take nothing, will let you know how it goes. I wish you well on your journey and would be interested to hear what you decide...Best wishes
I was diagnosed Winter 2012. After my research and study of this condition and treatments, I chose NOT to take any meds. I invite you to read my posts and comments.
Hi Casper. No Pd meds have been proven to have any ability to slow down the preogression of Pd. They are designed to mask certain symptoms. If you have noticed no change in your symptoms then it is not working for you. STOP TAKING THE MEDICATION! The only thing that has been proven to have any affect on Pd is exercise. Yes! Walking has been proven to be able to slow down or even reverse Pd. It has worked for me, and I don't see why it should not work for others. see my website - reverseparkinsons.net - and get as much info as you need to tackle this terrible condition.
Good luck
The only drug I can think of for which a neuro-protective effect is claimed is Selegiline / Eldepryl (Sp?) So for all other drugs there are none that give a long term benefit.
If you are not aware of any benefit then don't bother yet. Perhaps when symptoms start to impinge upon your ability to work or continue a favourite hobby then that might be a better time.
Or perhaps you're not on a high enough dose. That happened to me with a Levodopa drug. Taking 62.5 mg Madopar - no diference detected. Taking 125mg Madopar - complete transformation.
Can take a while )several months for the benefits of Pramipexole to be noticed.
The neuro-protective effect of Selegiline is not universally accepted.
It seems that a lot of people have problems with Pramipexole side effects. I weaned myself gradually of Pramipexole and found the withdrawal was very unpleasant with general feeling of malaise, feeling very restless and found I had RLS which was normally masked when taking the Pramipexole I was glad to start taking the Pramipexole again.
Belle, just wanted to give you my experience....Before I was dx, I Never took any meds...for ANYTHING. I have been on levodopa for over 25 yrs. I started at a very low dose and have gradually increased, but, without it, I would not walk. The only side effect, (in the last few yrs) is hair loss. Don't be afraid of it. You can always stop taking it if it doesn't improve your life. I am reading Reverse Parkinson's by John Pepper. I recommend it.......I wish I had this book 25 yrs ago.
Hello Jocee..Thanks for your very welcome reply. I will give it a go as you say I can always come off it. I am 2 yrs diagnosed and unable to walk because of pain in my heels, tendinopathy, this is caused by rigidty in my ankles. I am very open minded and am always exploring alternative treatments but in my desperation would welcome some improvement in my mobility. Your wisdom and hindsight is much appreciated. 25 years!!!! You are an inspiration thank you.
Hi I was diagnosed with PSP a rare form of Parkinson's last month. I am not taking meds because they have no effect on my symptoms. I have tried them all, levodopa, ripinerol, co-benaldopa, and a few more I cannot remember the names of. None of them had the slightest effect. And In some cases the side effects were horrendous. So now I just get on with life as best I can, accept the fact that occasionally I am going to fall, and hope people understand when I have to repeat myself over and over again to make myself understood.
What does PSP stand for?
Progresive supraneuclier palsy . Google it, not very pleasant
you have my sympathy. I have APS..( Atypical Parkinsonism Syndrome) and take ER Pramiperole daily...
Don't stop taking any medication suddenly and always tell the clinicians what you are doing.
At the beginning of life with Parkinson's some symptoms will have taken you to a consultation. Then you get the diagnosis and the clinician helps you to overcome the symptoms with drugs. The question you need to ask yourself at this stage is, "Now I know what the diagnosis is, and it's not going to kill me, can I manage with the symptoms as they are?" The answer will be a very personal one and will depend on your desired lifestyle, the non motor symptoms you experience and the support network around you."
When you find you are not able to achieve your desired lifestyle without medications, that's the time to begin them. The choice is yours but what you should avoid doing is retreating away from the world so that what you need to manage each day fits in with your level of independence. It should be the other way round; the drugs should be used to maintain your level of independence.
You will hear much about side effects of drugs but don't assume that you will meet them, just be aware of what they are.
There is a lot you can do to help yourself too. See a Phyiotherapist and get exercises to do each day. Join a support group and chat with other people with Parkinson's, eat healthily and exercise, exercise exercise.
I was diagnosed about a year ago. I now know that some symptoms had started the previous year, and some many years ago.
Currently, I do take Mucuna (herbal L-dopa) and I do think it helps some, but my symptoms have not really become severe enough to want to try other medications.
My neurologist is urging me to take medications. I did try rasagiline, but it gave me headaches and didn't seem to help.
The thing that helps the most is exercise. I swim twice a week and have a forced-exercycle. Keep moving!
