Any scientific papers on DAWS (Dopamine Agonist Withdrawal Syndrome) and/or withdrawing off or tapering down dopamine agonists?

[YodaDog]

Good afternoon everyone.

I had an appointment with my neurologist last week and finally convinced her that I should try reducing my Rotigotine (Neupro patch) medication (currently at 4mg). However, I am not happy with her suggestion/recommendation that I just drop down to 3mg patches. I told her that I wanted to drop down less than that, say to 3.75mg, but she was adamant that dropping down by1 mg would be fine. I have no intention of doing this (I have lots of spare 3mg patches from when I went up from 3mg to 4mg), but for my next appointment in 6 weeks time I would like to go better armed, hence my request for information on any scientific papers on DAWS and/or withdrawal/tapering down.

Thanks

[SueJohnson]

Check out the Mayo Clinic Updated Algorithm on RLS at

Https://mayoclinicproceedings.org/a...

[YodaDog in reply to SueJohnson]

Thanks

[Munroist]

Also google these three words "daws dopamine agonist" ... there are several links.

[Merny5]

I’m not sure why your neurologist cares about you wanting to reduce slowly. Why would you need proof? It could be extremely dangerous for you to reduce too quickly. I had to cut my patches in tiny pieces and reduce VERY slowly! It took me 22 months to go from 9 mg. of Neupro to 0mg. DAWS is pure hell!

[YodaDog in reply to Merny5]

I know, I've read many scary stories on here and elsewhere, I'm glad you managed to get off it. When did the DAWS start for you, during your tapering or after you came off it completely? Has the DAWS gone now? I hope so.

I don't think she really knows what it's like and I'm not convinced she really wants to know, she just reads the information provided by the manufacturer and that says reduce by 1mg at a time. Thanks.

[Merny5]

DAWS started while I was tapering. That was when it was the worst. I really didn’t think I was going to make it through. A few months after my last tiny piece of patch, I still had some symptoms but they were manageable. It been 7 months, I still have random and without reason bouts of extreme sadness and uncontrollable crying. This only happens a few times a month. Of course this doesn’t mean that this will happen to you. I was on such a high dose for many years. Please just take it slowly and maybe find a new neurologist.

[YodaDog in reply to Merny5]

Thanks. Take care.

[BenAZ in reply to Merny5]

Merny5, I have been off pramipexole for over 2 months now. Just taking gabapentin now and seems to work on my RLS. The problem I am having is the depression, anxiety overall unease with life. Definitely understand the bouts of crying. Has it subsided for you at all? I was on pramipexole for over 10 years with impulse control disorder and augmentation. Hoping these fade away with time...

[Merny5 in reply to BenAZ]

Those symptoms have subsided. However after almost 10 months I continue to have uncontrollable crying and some anxiety. A RLS specialist/ neurologist indicated that I may have permanent damage from taking the high dose of DAs for such a long period of time.