Attempting to get off Ropinirole - again

[Polar Bear]

Yesterday I attended an appointment at the Neurology Movement Disorder Clinic, I had been on the waiting list for nearly two years. Having had little success with previous Neurological Consultant appointments I did not have any great hopes and had actually considered cancelling the appointment.

Dr Best started by asking me how the symptoms felt and I told her briefly, cola/electricity/ants etc under the skin…. And we took it from there. She asked if I had it anywhere else…. Yaaay, she actually asked this…. Yes I do, in my arm and shoulder. (Some docs say you can’t get it there.)
Asked me if I had ever tried feet and legs in a bucket of really hot or cold water. I couldn’t believe it, this is what I used (icy cold water) to do pre medications. This lady ‘gets it !! Asked why I'd stopped…. Hmmm. When I started meds. She suggested I start doing it again about 20 minutes before bed.

Talked about my neuropathy and diabetes making an increased burden on my rls. She wants to increase my night time dose of Pregabalin from 200mg to 300mg.

Dr Best couldn’t understand why my GP was jumpy about my 180mg daily dose of Codeine given the difficulties I have and that my rls is also negatively affected by my neuropathy and my diabetes. She is including in her letter to my GP, the advice that my present control of rls using 180mg Codeine is acceptable and that should it be required, it is ok for me to go up to 240mg daily. If any difficulties she said to refer them to her letter with regard to todays appointment. She will copy me with the letter.
(If there was a real problem from GP over raising the Codeine, should it be required, Dr Best said she would write the script herself).
She also suggested that if necessary, we could change from Codeine to MST (a morphine) but that would be a bit of a step up and let’s see first how the increase in Pregabalin might help.

Wants me to reduce/come off the Citalopram SSRI if possible, and I can go back onto it if it is not possible. Probably not a great issue but it certainly is not a positive for rls.

She notes that my diabetes has not been regularly monitored and is suggesting that this is looked at closer. GP said last blood was satisfactory. Dr B does not think it is satisfactory and would like it a bit lower.

Dr Best suggests we do the above and she will telephone me in 4/5 weeks to see how its going and we can take it from there.

Unfortunately, Dr B is going off on maternity leave in October 2021 for 6 months but hopes that we will make some progress prior to her going.

For the first time ever, I felt that I was talking to a Doctor who knew what she was talking about. She was really listening to me and taking it on board.
I didn’t want to increase the Pregabalin and explained why……………….
Bad reports of real problems coming off it – she said but you’re not coming off it.
I referred to reports of really bad side effects – she said… well you’ve been on it for two years and no signs of any yet… and you can always drop the extra if you wish, but she reckoned the Pregab evening increase was worth a try and convinced me to at least try it before seriously considering perhaps the MST (Morphine Sustained Release) instead of Codeine.

She did say that she prefers Gabapentin to Pregabalin as it has less side effects, but that I appear not to have had any negative effects from the Pregabalin.

At the end of our one hour meeting, she checked me out with her little rubber hammer and all in working order, just my balance slightly off.

Dr Best asked if was anything I’d like to ask her, any questions. I'd taken a sheet of questions and topics that I wanted to discuss with her – she had beaten me to every one. To say I am impressed is inadequate.

Of course, all this has to be put into practice and time will tell, but this girl has raised my hopes that there is an RLS Consultant Neurologist in the Movement Disorder Clinic in Belfast who is understanding and really wants to help. She is also not averse to hearing what I’ve seen/researched on line and says she loves to work with a patient who has learned about their treatment and to be able to discuss treatment to achieve what will suit patient best and within doctor’s boundaries.

Just to note with regard to the bucket of cold water treatment that I hadn't used for years. I did this last night around 11pm but it was 3am before I went to bed which is quite usual for me. It did calm my legs, not fully, but enough, and meantime I took my late evening medications as usual. Normally I sleep in two or three 'shifts' of about 1.5 - 2 hours each shift. Now this is probably coincidence... but... I went to bed at 3 to read, fell asleep and awoke at 11am. 8 hours in one shift. I cannot recall that ever happening, certainly not in the last maybe 20 years. I know it is a coincidence........

Thank you to all who made it to the end of this post.

[Yankiwi]

Glad to hear about your beneficial appointment.

My husband and I had a typesetting/design business and we would sometimes work for hours without saving a document then *bam* the program crashed and all was lost. We saved every five minutes for a while until history repeated. Now the software saves by itself.

[Polar Bear]

Yankiwi, I can only imagine your feelings of horror to lose a day's work. The hair stands on the back of my neck at the very thought.

[Yankiwi]

We always said it was faster and easier to do it the second time. Wishful thinking, but also true as we had figured out what we had done.
Still, we hated when that happened.

[ViewsAskew]

What an AWESOME post to read! I had a bout with food poisoning and haven't been online for a few days. YAY for you!!!

[Yankiwi]

Food poisoning is horrible! Glad you're over it.

[ViewsAskew]

Food poisoning is horrible! Glad you're over it.

OMG - it certainly is horrible. Thanks - I am, too!

[Polar Bear]

The one time that I had food poisoning I was projectile vomiting within 15 minutes of eating, no time to even move.. A few minutes later my husband started. Followed by the two friends with whom we were eating. No one was fit to help another. A bad night.
Ann, I am so glad you are feeling better.

[tvssnt468]

I've been trying to get off Ropinirole for 4 years, also unsuccessfully. It seems to be the only thing that works. I am currently experiencing augmentation symptoms. I really think that doctors don't understand/know how to treat this disease. Keep fighting and I wish you well on your journey!

I'm wondering how you're doing down trying to get off ropinirole. I've augmented for several years now, and am dreading the withdrawal, but also not hopefully about what I'll do after that.

[tvssnt468]

I've been trying to get off Ropinirole for 4 years, also unsuccessfully. It seems to be the only thing that works. I am currently experiencing augmentation symptoms. I really think that doctors don't understand/know how to treat this disease.

Getting off of ropinirole requires finding a doctor who understands how to treat augmentation since many do not, including most neurologists. If you can travel to a Foundation Quality Care Center, they will be able to help you out since this is one of the requirements for them to get that title. You can also try the neurology department at the closest medical school/teaching hospital since they see more patients with difficult situations than other doctors. A third option is to start calling every neurologist in your area, ask to speak with the nurse and then ask 1) does the doctor have experience treating augmented RLS patients and 2) will the doctor prescribe opioids for chronic conditions. The answer to both should be an emphatic yes. As a last resort, if you PCP is willing to learn, copy some of the Foundation's material on augmentation and buy a copy of "Clinical Management of Restless Legs Syndrome", 2nd Ed by Lee, Buchfuhrer, et al. The book is available from Amazon for about $35. Mark critical passages in each and then share them with your PCP.

As for approaches for getting off of any dopamine agonist, there are two approaches. Some experts like to have a patient wean down to a lower dose (maybe 1mg of ropinirole) and then stop cold turkey. This causes the patient to get almost no sleep for about 4 days and the RLS goes crazy during that period. Many give up before they are finished, but the idea is to re-establish the patient's baseline condition before starting treatment again. Other doctors take the approach that the patient is going to require an opioid to manage RLS after stopping the dopamine, so they simply provide enough opioid to cover the dopamine withdrawal. This is a much easier approach for the patient, especially if the pre-augmentation RLS was severe.

My new doctor is a sleep specialist. She prescribed methadone 5 mg. to help me wean off ropinirole 2 mg since I've augmented at least 5 years ago. My prescription plan refuses to fill the prescription for methadone.

[Rustsmith]

Methadone is a great way to get off of ropinerole or pramipexole following augmentation. It is a once/day pill and is strong enough so that if you are like me, you will almost instantly feel better and will be able to get a reasonable night's sleep even as you reduce your DA dose.

[badnights]

this girl has raised my hopes that there is an RLS Consultant Neurologist in the Movement Disorder Clinic in Belfast who is understanding and really wants to help. She is also not averse to hearing what I’ve seen/researched on line and says she loves to work with a patient who has learned about their treatment and to be able to discuss treatment

That's absolutely wonderful.

My prescription plan refuses to fill the prescription for methadone

If you have to pay for it on your own, well, even though it's an outrage, it is still worth doing that in order to end the suffering.