Getting off Ropinirole

[Jackiep1216]

Hi, I currently am on .33mg of ropinirole and 600mg of Gabapentin. I was originally up to 1200mg of Gabapentin which wasn't working before being put on ropinirole. My RLS symptoms are getting worse and I don't want to increase my ropinirole dose so I'm looking for an alternative. My doc doesn't prescribe options for RLS. Dr. Earley at the Mayo clinic does not see people who are not MD residents and Dr. Buchfuher is in California. So what do I do? Anyone know a doctor near the Philadelphia area?

[SueJohnson]

There is a Quality Care Center in Pittsburgh one of only 12 in the world. I realize that is a long ways from where you live but you probably would only need to go there once and could then do telehealth. University of Pittsburgh Medical Center, 3601 Fifth Avenue, 4th Floor, Pittsburgh, PA 15213-3403, Appointments: (412) 681-200, Certified Healthcare Providers: Avinash Aggarwal, MD (QCC Director).

Both Dr Earley and Buchfuher are associated with Quality Health Centers.

If you absolutely can't go there, there is Dr. Jenie George [phone] Philadelphia. She is on the RLS.org list. However although the doctors have been submitted to this list by someone who used them and found them knowledgeable or by doctors who have applied to be on the list, they still might prescribe dopamine agonists which you don't want and/or they might not prescribe opioids if you need them. If it is a person that submitted the name they might have been happy with a dopamine agonist and without an opioid. The best way to find out if they are knowledgeable and uptodate is to ask if they have read the Mayo Clinic Updated Algorithm on RLS.

If you do see Dr. Jenie George let me know how it went so I will know whether to recommend her to anyone else who asks.

[Jackiep1216 in reply to SueJohnson]

I actually have an appointment with Jenie George scheduled for October as my current doc is retiring. I may message her now and rell her I want to get of ropinirole and see what she says... I was bummed when Dr. Earley couldn't see me. Do you know anyone who went to the QCC in Pittsburgh? I find all of this to be highly frustrating not to mention painful!

[SueJohnson in reply to Jackiep1216]

Ask her if she follows the Mayo Algorithm.

No I don't know anyone who has gone there but I do know you would get excellent help.

Do you belong to the RLS Foundation? If not it only costs $40/year, has excellent handouts and publishes a monthly magazine. I highly recommend it. rls.org

[Jackiep1216]

Thanks Sue. Yes I belong to the RLS Foundation. I do find it very helpful.

[HilsK]

Gabapentin is a strange drug. For me in low dose (300mg) it is a backup if the low dose Pramipexole (1,76ug 2d) doesn't help. That works. I works well too for me when the horrendous side of RLS which involves my whole body raises its head . and I add at those times low dose opioids. My Dr wanted me to take 1300mg of Gabapentin which made me so ill, my BP soared and my mood dropped like a stone; yet for some people its a brilliant pain killer and makes them feel quite spaced out and euphoric. I personally find that varying the nature of the extras I take to help control RLS works really well most of the time. My doc's not very happy with that as he likes drugs taken regularly cos it says so on the box. But its me that has rls NOT HIM. Good luck.

Would love to know how you get on and what they recommend. May be ask about layering drugs rather than massive doses of a single drug ??

[Seaux]

The ropinerole is slowly making the RLs worse so get off it as soon as you can. My RLS got severe too so my neurologist sent me to a pain clinic where they put me on methadone. But what helped me the most was finding out which foods caused me the most low grade inflammation inflammation and stopping them. The foods that caused me the most inflammation were/are those high in histamine. Hope this helps.