Keep weaning my ropinirole or wait for doctor's advice?

[ddkjohn7]

Thanks Steve. Your journey makes mine look like a walk in the park. I am sorry you had just a bad experience with a medical professional. I applaud your courage to be able to share your story, it is an encouragement to me and I am sure many others.

[ddkjohn7]

So I tapered down the tramadol and quit taking it with no ill effects. I tried to taper down to .25 ropinirole but with no other meds to help it was brutal. I did add some CBD with CBN and Melatonin. I take one gummy before I go to bed and I sleep for about 61/2 hours. I am usually up around 2 when the ropinirole wears off but then I am able to sleep until about 5 or 6. I will continue on my .50 ropinirole and 1 CBD gummy until my appointment at the Quality Care Center in August.

[Polar Bear]

Well done on tapering off your Tramadol.
Getting about 6.5 hours sleep is pretty good, all things considered.
The last steps of weaning off the Ropinerole are the hardest. I did it very slowly with minimal drops, i,e. cutting the pill into small pieces and also taking longer between each step of the taper.

I note you have added Melatonin, which can help some sufferers and not others. It did nothing for me in my search for sleep, but I had to continue on the full 13 week course of Melatonin before my GP would accept this as a fact.

[ddkjohn7]

Thanks Betty. I have read many of your posts but would you remind me again where you are today. What are you taking and do you still have any symptoms? I am wondering what the end game will be. Thanks.

Diane

[Polar Bear]

ddkjohn7 - I am a sufferer of some 40 years and spent most of them in misery. At present things are good. My daily prescribed meds for RLS are Cocodamol 30/500mg 2 pills x 4 times daily, and Pregabalin 300mg 2 pills, one morning and one evening.
The Pregabalin was originally prescribed for neuropathy but I have the benefit that it helps with RLS. Just to note that although I am prescribed the cocodamol 4 times daily I usually only take it 3 times daily. As I am generally pretty mobile during the afternoon RLS symptoms are kept at bay and so I skip that dose. This means I have 2 pills spare, sometimes take one during the night. Mostly I don't. This also means that I have built a stash of cocodamol, my security blanket in case a doctor tried to reduce my dose (as a new doctor did at one time, simply halved my dose, and I had a fight on my hands for a few days). Or worse, stopped it.

Yes I still sometimes have symptoms but nothing really awful. Cocodamol is the bottom end of opioids and I am on the max daily dose. My doctor wouldn't be happy to prescribe anything stronger. I am in the UK. If I'm watching tv of an evening and RLS starts (occasional breakthrough at about 9pm) it is enough to go do something for 15 minutes and generally they pass. If I feel it necessary I'll take an extra cocodamol. Extra as in from the afternoon dose that I don't take. I never exceed the daily max.

I take my cocodamol and Pregabalin in the morning, again after dinner at about 8pm. Then cocodamol at about 11pm. The Pregabalin that I take at 8pm works better for my neuropathy than taking it at 11pm.
I go to bed at about 1am and get up around 10am. However I am not a good sleeper and also have sleep apnea (use a cpap machine), I read fiction in bed, often for 2 or 3 hours. I'll have a comfort break around 6 or 7am and will get back to sleep ok.
It is not RLS that keeps me awake, I often just don't get over to sleep. It was 6am this morning before I slept and then got up at 9am.
Occasionally if I am reading in bed for a long time, some RLS will kick in. I don't try to fight it, just get up, go have some cereal, amuse myself for about an hour while being mobile and then as the symptoms start to ease I can go back to bed.
My RLS was/is 24/7 since my very first episode 40 years ago, included both arms and legs and came from nowhere.
It took a long time to achieve pretty good control of the symptoms, it's not perfect but it is manageable.

I will just add that when travelling I may take extra medication, an extra dose of cocodamol. I also have the RLS Foundation Card confirming I have RLS and keep it in my purse in case I want to show it to a flight attendant to explain why I am on my feet so much. Long car journeys may involve stops to stretch the legs for ten minutes.

[ddkjohn7]

Thanks for taking the time to share Betty. When I read peoples journey it gives me hope.

[ddkjohn7]

I wanted to post an update on my journey to get off the ropinirole. I saw Dr. Aggarwal at the Quality Care Center in Pittsburgh. She spent an hour with me going over my history and my current medications including what I have tried to date. She confirmed that I was augmenting on ropinirole and applauded me on staring to wean off the medication. I was so grateful to find a doctor that was so knowledgeable and thoughtful regarding my RLS.
Dr. Aggarwal shared that she is attending Hill Day to try and get funding for research and raise awareness and I thanked her and actually came to tears.
She suggested I ease off my intense exercise and try to exercise moderately and spread it out through my day. I was walking pretty hard for about an hour each morning. I now do moderate walks for about 20-30 minutes a couple of times a day. She prescribed 25mg of pregabalin at 6PM and 9PM and if no reactions to the medication to increase to 50mg at 9PM. Last night I took 25mg at 6PM and 50mg at 9PM along with .50 ropinirole at 9PM. I woke at 2:30AM to use the bathroom but got back to sleep and slept until 6:45AM! I have not been that rested in quite some time!! I know it my nights may vary until I get off the ropinirole but I am finally hopeful. I also have not had any alcohol since my visit with Dr. Aggarwal last Friday. I truly never thought that drinking a beer or two in the evening was effecting my restless legs but looks like it may have. My husband and I are very social and this will be a tough one. I guess non-alcoholic beer is my new go to! She suggested I reduce the ropinirole .25 each week. I will drop to .25 this Sunday.
So thankful that so far I have no side effects from the pregabalin. Thanks for the replies and support!

[Polar Bear]

I am delighted you had such a positive appointment. It's great that your sleep has improved.
Good luck as you continue to reduce your ropinerole.

[Monolight1]

Even without reading any of the content of the thread or the OP's post it must always come to hand that you should always just wait for the doctor's advice, no?

[ddkjohn7]

Thanks Betty. A second night of good sleep. Wow what a difference it makes.

[Polar Bear]

We will hope that this continues for you and look forward to an update.

[ViewsAskew]

Thanks Betty. A second night of good sleep. Wow what a difference it makes.

YAY!

[ddkjohn7]

Update on my journey to be ropinirole free. I went down to .25mg on Sunday night. Needless to say the 8 hour nights have ended. It is not as bad as I expected. My current medication is 25mg of pregabalin at 6PM and 50mg of pregabalin at 9PM with the .25 ropinirole. My legs are not restless at all during the evening watching television. I go to bed around 10:30PM. The first night I woke at 1:30PM with restless legs. I stretched and moved around and got sleep on and off until 5:30AM. The second night I went to sleep around the same time and woke at 2:30PM and the rest of the night was a bit better and I woke at 5:50AM. I am hoping to get this much sleep for the rest of the week as it's definitely tolerable. Next Sunday I go to no ropinirole.
I am so looking forward to being free of this drug!!