DAWS Has Me Scared

[Beamishmom]

Anyone out there suffering with DAWS?  Anyone out there suffering with DAWS who is getting over it?

[etterus]

What is it?

[silvestrov]

DAWS:

ncbi.nlm.nih.gov/pubmed/200...

CONCLUSIONS:

Dopamine agonists have a stereotyped withdrawal syndrome that can lead to profound disability in a subset of patients. Physicians should monitor patients closely when tapering these medications.

[honeycombe3]

Hi there,

As the acronym was not familiar I Googled DAWS. Dopamine agonist withdrawal symptoms as I discovered it meant are something I have experienced BUT as each of us reacts differently my experience may be of no use. My agonist is Ropinirole (Requip). I have taken it for 12yrs with doses varying from 16mg daily to nothing (didn't work) & back up to a steady 8mg. Reasons for titrating down included compulsive behaviour (binge eating), fluid retention (ankles & feet), itchy scaly skin & RLS. All changes were slow over time in consultation with my medical support team.

[Court in reply to honeycombe3]

Hi there Honeysuckle

I was just about to Google DAWs when I read your reply.  I also have been on Ropinirole for quite a few years.  I have not had any adverse effects, as such, but have found that the generic version does not work for me.  At my last visit to my Consultant she reduced my dose from 8mg to 6mg once per day. I am going again next week so must make my usual list before then.  She must dread seeing my name on her list!! Only joking, I hope.  Having a few problems at the moment, which I hope can be sorted out.

[honeycombe3]

Hi Sue,

It's Angela here. You & I parallel in so many ways. We know it is possible to make changes to our meds regime so long as we do so slowly & keep the medics onside. I think you may have had changes of consultant over time. I still have my gerontologist even though he has mostly retired & the same experienced PD nurse. This keeps my confidence strong. I wonder whether or not you got your mouth problems sorted? I am losing teeth at a frightening pace now despite doing all the things recommended. Too stressed to write more now, keep up the fight.

[park_bear in reply to honeycombe3]

PD dries out the GI tract from one end to the other.  Dry mouth / lack of saliva sets up an abnormal environment in your mouth which has evidently resulted in your gum disease and/or decay and loss of teeth.  See if you can get your MD to prescribe Cevimeline to restore the flow of saliva.  If you are having gum disease you need to be seen often by a 1st class dental hygienist.

[honeycombe3]

Parkbear,

Thanks for that. This is one of the most common side-effects of some PD meds & as such features on here quite often. I haven't come across Cevimeline before so I Googled it. Unfortunately I can't take it as I have asthma & heart problems which are contra-indicated. Actually my defective left ventricle has become my major health problem over the last few months but Mr P is always on my left shoulder.