dystonia after requip

[Grvarley]

My husband developed dystonia approximately 10 years ago. We figured out that he developed it after taking Requip. His provider was clueless that the Requip could have caused the dystonia. I am a retired nurse and figured it out about a year after he developed the dystonia. No one believed me when I stated that the only change in his care was the addition of Requip.

He had to wear neck braces because his chin would literally sit on his chest. As time went on he got a DBS but never was able to resolve the dystonia. He continued to be on Requip until well after his DBS placement.

It has been frustrating for me because I know that Requip was the devil that caused my husband's iissues. He is now trying to regain strength in his posterior neck muscles so he can counter act the damage done.

Yesterday I located an article in the written by the Movement disorder which clearly identified another person had the same issue but his Dr. figured out that it was Requip and immediately stopped the medication. After four months the dystonia completely resolved.

I am wondering how any people may have had the same situation as my husband but they just didn't know it was a medication issue. I wonder how many people being treated for restless leg syndrome have developed a dystonia.

If anyone has any information for me please contact me. I would like for providers to be aware that when a Parkinson's patient develops weakness in their neck muscles it could be to his medication not the disease.

My husband's activity level decreased dramatically because his neck drop causes him to carry more weight past his center of gravity.

[park_bear]

I took a look and found a couple of studies myself:

web.b.ebscohost.com/abstrac...

Cervical dystonia in Parkinson's disease: Retrospective study of later-stage clinical features.

This study found a positive trend between Cervical dystonia and duration of pergolide use. Pergolide is a dopamine agonist

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prd-journal.com/article/S13...

Pramipexole-associated fixed limb dystonia in Parkinson's disease

" Striatal (hand and foot) and postural (antecollis, pisa syndrome, camptocormia and scoliosis) deformities are disabling symptoms in Parkinson's disease (PD) patients [1,2]. The pathogenesis of these deformities is not well understood, however limb dystonia, contractures and rigidity play an important role. There are a few reports indicating that dopamine agonists can induce these deformities within a few weeks to 18 months of treatment initiation, which reverses on stopping the drugs [2]. "

What study did you find?

[Grvarley in reply to park_bear]

Ropinirole-Induced Anterocollis in Parkinson's Disease. My husband would have been the first person that would have been found to have the correlation if the doctors listened to me. The manufacturer should have mentioned dystonia. I cannot believe that doctors have not looked at this as a possible cause when someone develops it. People are prescribed requip for restless leg syndrome. I wonder how many of them developed dystonia and people don't know why they got it. I am going to contact the FDA

[park_bear in reply to Grvarley]

By all means do what you can to get attention paid to this problem.

I wrote this piece which explains why even devastating adverse effects are typically ignored by doctors and go unreported:

When Good Doctors Prescribe Bad Medicine:

tinyurl.com/zvgcu79

[Grvarley in reply to park_bear]

Thanks. Read the article I sent you. I found it yesterday. My husband was shocked because he thought the picture of the guy was of him. He just could not believe that he has gone through all this pain due to negligence.

[MarionP in reply to Grvarley]

Requip: Probably why the biggest manufacturer announced just a couple months ago that they were taking it off the market. Used to be safety testing was required by the FDA but no more. Any research the manufacturers do that include adverse effects are allowed by the FDA to be suppressed by the manufacturer. Beware trusting the FDA, that went out with the last century before the industry took over the government (most fields).

Anyway, here's a reference for you. empr.com/home/news/parkinso...

[Hikoi in reply to MarionP]

That is mis reporting and personal opinion Marion.

Requip XL is still available as 4mg, 6mg, 8mg, and 12mg extended-release tablets.

I dont agree with their move but the biggest manufacturer announced that they are removing the short acting requip off the market. They have severely restricted manufacture and supply probably due to competition from generics

[Grvarley in reply to park_bear]

movementdisorders.org/MDS/J...

[sydneyruby]

all I know is that most dr's don't know much about the disease even though they are experts

[MarionP]

ultimately I expect that, just like anti-depressants and stimulants and opiates, there is what is called a "negative feedback" loop, sometimes more than one (such as with alcohol) wherein the amount of internally produced OR mediated OR modulated chemical is changed due to the presence of the drug, eventually leading to toleration and dependence both. In psychiatry they describe this phenomenon (though they deny it to patients) as "poop-out."