Hi not sure if this is where I should be posting this but I have decide to come off statins. I am now almost sure it was statins that triggered my PD as I was on them 2 years before dx and today's news states that too many people are being prescribed them for no reason
I'll take my chance of getting a heart condition rather than staying on them. I have posted on this subject before but today's news has finally convinced me to stop. what thoughts do others have on this?

Hi Renee

My o/h was recently taken off statins because he felt as if he had flu permanently in that his limbs ached unbearably. Soon after discontinuing them those symptoms disappeared like magic.

Hi Jenniferchristine,

Many find changing their meds from one brand to another can alter their side effects whilst still deriving benefit from the intended effect. I found changing brand of dopamine agonist improved life for me. I gained claustrophobia but lost the extreme tiredness. The claustrophobia is mild so it was a good swap. No point in telling which brands as I know someone who posted earlier on this thread had very bad experiences with my good medication.

Keeping a diary is a good idea - keep a record of how I feel, drugs I take, were they taken on time, exercise taken, mood, illness anything really that affects my PD. It's surprising what you learn once you have a few months worth of entries. A quick read before meeting up with neuro makes a big difference, you have a short time and the better prepared the more productive the meeting. In fact I prepare a list of things I want to discuss.

If you are inclined to reduce meds to see if you're taking too much, do it in small steps over a long time and be honest with yourself. This is a complex disease and there are so many intertwined influences - mood, placebo, nocebo (my new favourite word), the weather, pressures on you, illness, diet ...... If you reduce on Monday, have a great time on Wednesday, resume your original dose on Thursday and have a bad Friday - does that tell you to reduce is good? If I add you were looking after your Granddaughter on Wednesday and you really felt you were wasting your time increasing on Thursday so by Friday nocebo kicked in ... well not so clear cut.

My personal opinion (not advice) I really think, based on my experience, that giving up meds altogether is not the best way to go about it. Working out what's wrong, your fundamental problem and telling your neuro in plain language is far more productive. Given the little I know about you guys, the common thread to the three cases here (your o/h, Spam's and mine), is we were / are mind numbingly knackered and that needs urgent treatment.

Well, here goes!

I spoke to my neurologist and his team and he was very amenable to me trying to come off all the tablets I am taking for PD. He told me how to do it safely and gave me advice as to what to do if the symptoms become intolerable. I am very pleased with this result, even if only to find out what my 'base line' symptoms are.

Maybe I should write a blog so you guys can monitor my decline!

If I start howling at the moon, come and get me!

Let the experiment begin.

spam95

Spam

Good Luck ! I'd be really interested to hear how it goes

Our very own white rat

Peter

Hi ,
i have been following this thread with interest on different views on wheather to stop or come of medication.and been thinking for a couple days nows and when the nuro confirms again parkinsons i have decided to not start any treatment and let everything take its course.i did have tablets last year and not very successful with one brand twice making me very ill and ending up in hospital.i know over the last through weeks i have been slow,stiff and in some discomfort but i think at the moment i can cope.
since i took some time off from work ,i have been able to relax more,make sure i walk twice a day with our dog and my o/h says i have ben better mood wise not snappy all the time.more person friendly,(i think his sense of joking).

Right now I'm about 3 plus years since DX, I too appreciate Grey's detailed and profound post on this subject. I was prescribed Ropinerole immediately 2 yrs ago which I never even started. Sound like a pattern yet? it will....
After 2 years, I realized that I am not going to "beat" PD alone and also a carpenter with PD isn't going to set the World afire!
I went back to the neurologist's office, allowed the "new guy" to re-diagnose me and after a few months, applied for (and got) disability. I was prescribed Ropinerole 2Mg ( a huge start dose) which I took only twice (nausea which kept me horizontal past noon).
Fast forward a year during which I have been taking Azilect 1Mg daily and I have been feeling pretty good. I have several personal projects in various countries that have been keeping me busy and my mind occupied (fulfilled).
This last weekend I flew through Miami and its HUGE international terminal. I was cramping, limping and screwed, trying to reach my gate. I realize now, my immersion in my own projects has allowed me to gloss over the damage caused by this insidious disease, ignoring the gait issues and decay in muscle tone caused by failure to exercise.
No matter how you choose to manage your medications, don't ignore your physical condition as it relates to working out and exercise. I am a year past where I should be because of complacency and pig headedness.

I have started the blog...if you're interested follow this link

http://stoppingpddrugs.blogspot.com/

Spam95(white lab rat!!!!)

....go Ratty !!

I was actually reading your blog ! but I couldn't post on it without a profile