Father advised to go off Levodopa/cabodopa cold turkey for 48 hours
 

Hi guys

I'm new to the forum but relieved to have found it! My father was diagnosed with Parkinsons disease in 2010. He started taking levopdopa/carbadopa around that time.

He is currently on levodopa/ carbodopa 100/25, 2-3 times a day. He also takes supplements prescribed to him by a 'Holistic' GP namely mucuna pruriens extract, bacopa monnieri extract (or brahmi) magnesium, fish oil and coenzyme Q10.

Two weeks ago whilst i was away on holidays his neruologist requested he have an MRI for a suspected pinched nerve in his back. My father was unable to stay still for the MRI and so it didn't work. He returned to the neurologist who told my dad to stop taking his levodopa for 48 hours before the scan and try again. He apparently also stated he had my dad on a too higher dose in any case. So my dad stopped taking his medication and became very ill, in a lot of pain as he could not stop shaking to the point that his partner ended up taking him to ED. The neurologist there told him to start taking his medication again, which he has done though he stopped taking his mucuna supplement. I arrived home yesterday and was shocked to find him seemingly frail and shaky, he says he feels as though he's 'not switched on'. He has resumed his normal dose of levodopa (2-3 tablets a day). One positive is he has stopped doing this strange hip movement and movement of his left hand which he puts down to stopping his mucuna supp. so he perhaps was on a 'too higher dose of dopamine' as the neurologist suggested.
My concern is he has gone off the supplement and still taking the same dose of medication which we all know has its own issues.
My other concern is that he wont return to his previous state following this shock and remain in his 'not feeling switched on' state.
After reading this forum i can't believe a neurologist would suggest he go cold turkey off his medication?? He has an appointment with a new neurologist in December as it's the closest time we could get.
I would appreciate anyones thoughts on the matter.
Kind regards

Sydney, sorry to hear of your father having a difficult time. The slow change of medication is always best, so I suspect a bit of a shock to his system. I do minor things and it seems it takes two to four weeks to be back to normal.

When I had a PET scan they said, "remain still for 45 minutes". Uh, not possible. I have a dislike of tight spaces, which causes stress, and I shake life crazy. So the good Doctor gave me 2mg of Xanax. I'm not a small person but have dropped from 21 to 19 stone over the past year. For those in North America, a stone is 14 pounds. So close from 294# to under 266#.

Still I was out for 45 minutes, but an hour later back to my old self. Worked like a charm.

Best wishes for your father.

Hi Sydney,
Going off meds for an m.r.i isn't unusual.
Only thing is it is usually done for just a few hrs so that you don't suffer too much by being off for too long and also in case the pwp having scan or m.r.i. gets dyskinesic and therefore can't lie still.
In your Dads case it isn't so cut and dried if he takes mucuna as well as being
prescribed levodopa by a neurologist.
He might be able to cope without tremors present is another reason the above approach i suggest might work if he still wants an m.r.i.
Best wishes.

This can be fatal!
 

The abrupt halt of carbidopa/levodopa (Sinemet) can put your father in severe - possibly even lethal trouble. Long ago, doctors used to have patients take a "drug holiday," but after some near death experiences (and even losing a few) this practice has long been stopped.

Quoting from the National Institutes of Health (NIH):
NOTE THE LAST SENTENCE!

What is Neuroleptic Malignant Syndrome?
Neuroleptic malignant syndrome is a life-threatening, neurological disorder most often caused by an adverse reaction to neuroleptic or antipsychotic drugs. Symptoms include high fever, sweating, unstable blood pressure, stupor, muscular rigidity, and autonomic dysfunction. In most cases, the disorder develops within the first 2 weeks of treatment with the drug; however, the disorder may develop any time during the therapy period. The syndrome can also occur in people taking anti-Parkinsonism drugs known as dopaminergics if those drugs are discontinued abruptly.

Do not try this unless under the care of a competent physician. It is preferable that PWP see a Movement Disorder Specialist (MDS).

Peggy