One doctor says take pramipexole 3 tablets, twice daily and the other doctor says he doesn't believe in it and take levodopa. Any thoughts?

[Casper3564]

I've been taking pramipexole for just less then two months and other then a few minor side effects I'm really not sure what's it's done for me. Anyone got on thoughts on these meds. Just wanted a second opinion.

[Prayingforacure]

I took my husband off of it December 2012 after many years of his taking it, he is much better since going off of it and also the sinamet, he built up an intolerance to them and honestly the side effects were really bad, it was when his behavior became dangerous that I made the decision to take it upon myself to stop giving them to him. Right away big difference and all the awful behavior stopped. It is a personal choice and I chose to go with supplements and nutritional support, finally have a Physician that is into holistic and is very supportive in the decision I made for him. Kind regards, from us both.

[Belle21William]

I'm completely overwhelmed by so many differences of opinion. i am taking slow release Mirapexin and have developed swelling in lower limbs and have agonising pain in both ankles. I am unable to walk, let alone excercise, consequently for the first time in my life have ballooned in weight. Any positivity I felt regarding my management of PD has evaporated. The leading question....Mirapexin or PD????? There is no definitive answer. I'm seriously considering coming off drugs and managing symptons naturally. I feel the side effects outway any benefits but will only know if I STOP TAKING my Neurologist's advice and go it alone....HELP!!!!

[Prayingforacure in reply to Belle21William]

Praying for all others, any and all decisions we are confronted with. It is not easy, all our friends and family tell me I am a strong lady, I say no I am not but my hubby is. He still has the disability of walking but no more confusion, and all the rest of the bad stuff that was happening. I gave up on his physician in January of 2013 when the Dr. Called hospice to take over, five times they called and I kept telling them no way, my husband was no where near their coming. Thank God for the blessing of our new family physician. I believe with all my heart God doesnt give up on us and we must not give up on ourselves, I cling to my belief every day for my husband. We must keep pushing on. Kind regards from the both of us.

[Belle21William in reply to Prayingforacure]

Thank you for your kind and inspirational words.I will ask Him for guidance and perserverence. I know I can carry on this journey of discovery and it is so helpful to hear of other PD sufferers and their carers experiences. I equate my struggle with PD to climbing a mountain, I might never reach the sumit but will have a damn good try.All good wishes to my fellow "MOUNTAINEERS" lol....x

[movinngroovin]

Low Dose Naltrexone folks-Low Dose Naltrexone!!

[Pete-1]

I've been taking Pramipexole for some years now. When I first started I couldn't detect any change in my symptoms. After about 6 months perhaps a bit less I noticed that my left hand which I struggled to co-ordinate had become much better, e.g. the finger and thumb tapping that the neurologists get you to do I could do for a lot longer, Having realised there was a difference I could see that in general my co-ordination was improved. One curious thing I had started to get quite bad Dandruff. This stopped and is now no longer in evidence.

I once weaned myself off Pramipexole. I did this over a period of weeks. This exposed a symptom known as RLS (Restless Legs Syndrome. This is a very disagreeable thing to have as RLS symptoms almost totally prevent sleep. RLS has its own domain on healthUnlocked for more on RLS. This may occur as a symptom of PD or on its own.

Withdrawal of Pramipexole was bad not only because of the RLS but also because I just felt so perculiar. I can't think of a better way to describe this than to say I had a general feeling of malaise. Anyway I was very glad to restart the Pramipexole.

I believe that if I had persisted then unpleasant withdrawal symptoms would go. At that time I had no plans to permanently stay off Pramipexole.

Levodopa (main ingredient of Sinemet / Madopar / co-benel dopa) is still the best medication available. I would have the most drreadful time getting about without it.

[viva]

I have tried low dose naltrexone for a month - did not feel any better regarding my pd symptoms like slowness, poor balance, stiffness and freezing. My mood was better, but i am not sure if LSN to blame. I am usually in good mood anyway. May be a month is not enough to try it. Any thoughts?

[JohnPepper]

Hi Casper. First of all I must tell you that I am not a doctor, I am a patient. Secondly, other than Azilect and Eldepryl, none of the meds has any affect on the progression of Pd. That means if you take them or don't take them your Pd is continuing to get worse. If you do take them, you will then also have to deal with the toxic effect of that med on your system. The side effects of all Pd meds can be very bad. So, think carefully before you start taking them. They all mask various symptoms, depending on the patient. That only lasts for a short while, up to a few hours. But, as with all drugs, you have to continually take more and more in order to get the same effect. That costs money and it also increases your body's workload, dealing with the toxic effects.

I was very lucky. My neurologist prescribed Eldepryl only, which I took for ten years. After ten years I was able to come off that med and have not had to take any Pd meds ever since. That was over eleven years ago. I did a lot more than take that medication. It is too much to tell you on this website but you can go to my website - reverseparkinsons.net - and see how I managed to reverse many of my Pd symptoms and lead a normal life again. Remember, we are all different!

John

[Kadie57]

Mirepex is nasty stuff (It is being investigated by Food n Drug for causing heart problems)use Sinetment(Generic Levedopa) when possibly I use a 24 hr Nuepro patch to replace Mirepex and I use this shoulder to shoulder 1 daily. But a good Doctor should be able to guide you, You shouldn't have to ask what drugs to use. the usage depends on YOUR NEED......which we have no way of knowing. God bless!!

[Belle21William]

Thanks Kadie57 for your comments on MIREPEX. When I told my PD Nurse wanted yo come off Mirapex her response was "why" She said I was teaching her things. I can't believe was put on slow release MIRAPEX by my Neorologist without having my attention drawn to it's link to heart problems. I now am no longer a novice, 2 yrs. dxd., and do my research. I am often confronted by G.P.'s, physios and various health professionals who admit to me they have a very limited knowledge of PD, It's treatment and particularly the various drugs available. Thank God for the internet and our ability to make informed choices about OUR PD, rather than follow, without question, the instructions of the experts.

[Hikoi in reply to Belle21William]

Belle, Kadie, the link to heart disease is new to me can you direct me where i can find out more? Thanks

The neupro patch and mirapex are both agonists.

[Belle21William in reply to Hikoi]

Hikoi...I googled Mirapex and found out The Food and Drugs Amin was investigating a possible link with heart failure. I am breathless, have swollen feet and fluctuating blood pressure. My G.P. assures me nothing to worry about but I remain unconvinced of it's safety. I'm certain these are side effects of Mirapex. Will reduce dose slowly and wait for some improvement. The pay off back to square one with PD symptoms. Rock and a hard place springs to mind...

[Hikoi]

Hi Belle

I think you are right and those symptoms are a Mirapex side effect. Swollen ankles in particular seem very common on agonist drugs. I found the link thankyou. The alert was in 2012 and I cannot find an update but I notice FDA have not withdrawn the drug.

When trying to find more information i came across this but again no update.

parkinson.org/Patients/Pati...

As you say we are between a rock and a hard place when it comes to drug treatment.

[Belle21William]

Hi Hikoi...It's not only swollen ankles I have experienced several forms of OCD. I have a craving for sugar and find myself consuming sweets and chocolate, especially during the night when my sleep is reduced to 4 hours a night, if I am lucky. I spend hours on the computer and bizzarly have developed a passion for "Wordsearch and crossswords" My PD is sometimes overshadowed by the numerous side effects of Mirapex...will reduce dose slowly and see what effect that has on my PD and OCD. Will report on the results.

[Hidden in reply to Belle21William]

Hmmmmm....sweets and chocolate..how I miss them. I confess, I do cheat on occasion. You know, quality of life.

[Belle21William]

Moderation is the answer...unfortunately my brain has forgotten this. I must admit I find it hilarious when, in the middle of the night I'm to be found gorging on my favourite sweets, glass of wine in hand and avidly completing a crossword. It amazes me how one can find humour in what could be perceived as a sad situation. The PD ride is a rollercoaster and I can't get off...might as well go with it and maintain a positive mental attitude. The alternative is to let PD take over your life, not an option for me.