First step taken on road to withdrawing from Ropinirole

[RosieRow]

Good evening, my fellow RLS sufferers.

I have just returned from my GP who is a good listener. He has told me that I know much more about RLS than him - and I know much less than most of you! So thank you for all that you each share in order to inform the wider community. The GP has accepted all my reasoning for wanting to come off the 1.5mg of Ropinirole I am currently taking. I have a blood test booked for two days' time and, at his suggestion, will make sure I ask for the figure of the ferritin lovel and not just that it's 'normal'.

In the meantime he is writing to neurology, including all the notes I have written up, asking for advice about RLS, withdrawal from the DA, appropriate medication to help and so on. An appointment for me to speak face to face with a neurologist will take 9-12 months. I can't believe I would have that long to wait before the next bit of augmentation sets in so he and I will have to agree how to set about the process and just hope we get some helpful advice. I have told him what I'm doing to try to alleviate symptoms - compression socks and magnesium oil (got some itching this evening, 24 hours after first using it, but it's well within bounds of coping with), and emphasised the necessity of making sure my ferritin levels are at an appropriate level for RLS and, if not, taking ferrous sulphate or gentle iron. So long as I can get as much working in my favour as possible, I hope the effects of withdrawal will, when the time comes, be kept to a minimum.

So, having made the decision for myself, I now have my GP on-board with it. I suspect wheels might grind rather slowly, but he has given me 'permission' to chase things up in two to three weeks.

For now, I wish you all a quiet night!

RosieRow

[Hidden]

I’m so excited for you RosieRow! You’re definitely on your way! I’m hoping for your successful withdrawal when the time comes! I think you’re doing the right thing! I’m withdrawing from Mirapex now. We’ll make it!

[RosieRow in reply to Hidden]

Thanks so much - I don;t know how soon I can start it - I'd like to get ferritin levels up (if necessary) and magnesium too. I'm interested to see how the magnesium oil works tonight after a brilliant night's sleep after the first time yesterday. I know it may not work everytime - but any time is better than not at all.

Keep strong - and, yes, we'll make it!

[Hidden in reply to RosieRow]

I use Magnesium Oil spray too and it helps so far! I also wear compression stockings to work and that also helps! I resort to ice packs when nothing works...

[Pippins2 in reply to RosieRow]

Hi reduce slowly and ask your GP fot strong painkillers to help you.Tramadol or Codeine help alot of people .Put a plan in place as to what you are going to take to treat your RLS once you have withdrawn .Good luck x

[Pam34]

Hi RosieRow

Well done on making the first move! It took me 8 months to see a neurologist by which time I was through withdrawal and on my next stage of medication!

You are doing all the right things but it could take several months to raise your ferritin levels (and you might be one of the ones for which it makes no difference) and magnesium spray is unlikely to help you through the bad stages of withdrawal.

It sounds like your doctor is on side, but unfortunately you can’t guarantee that the neurologist has any knowledge of RLS either so you need to ask your doctor for a low dose opioid to help. Believe me you will need it. I took 50mg of Tramadol in the evening and that became my form of medication for the next 2 years! Only decrease the ropinirole very slowly - 0.5mg a week and be prepared for no sleep at all for several days. You will feel awful but lots of us have done it and come through. There is life after ropinirole 😊

Let us know what you decide and good luck!

Pam

[RosieRow in reply to Pam34]

Good morning all, and thank you all for your encouraging responses.

Last night I was just a little too late getting into bed after taking the ropinirole so the RLS did keep me awake and up for a couple of hours, but I was asleep come 1am, and slept quite deeply again until 6.30am - thanks, I feel sure, mainly to the magnesium oil but also the compression socks. My legs have this heavy sensation with the oil - a sort of pleasant relaxed feel, which is amazing.

As for the future plan, my typed up 'report' I gave the GP included your way, Pam, of withdrawing from DAs, citing tramadol, dosages, - the lot! As for the need to go slowly - I was thinking I might take it in 0.25mg steps - that would take six weeks! Does that seem sensible? Or does that draw it out too long?

One further question I have, can anyone in the UK please tell me which brand of ferrous bisglycinate (gentle iron) they use? Liquid or tablets, dosage, etc? I see that most recommend alternate days and what I've read elsewhere says on an empty stomach. Is that right?

RosieRow

[involuntarydancer in reply to RosieRow]

Go RosieRow! You have clearly read and absorbed all the salient information on here. If you haven’t already you could also check out the Johns Hopkins Hospital Website. Some of the world experts in rls operate out of there and there is excellent information and short videos on there. Also the website of Dr Buchfuhrer (rlshelp.org), especially the later patients questions pages makes fascinating reading. Finally the US rls foundation (rls.org) has some very useful webinars some of which I think are posted on YouTube.

Very best of luck with your plans for your future rls management.

I use Solgar Gentle Iron capsules. It’s stocked in my local chemist but Holland And Barrett also stock it.

[nickelrenee1 in reply to involuntarydancer]

I am currently, so to speak, being treated at the John's Hopkins RLS center and while they know a lot about RLS, they offer NO support while you are going through this process. I already have a diagnosed anxiety disoreder as well as a history of depression for 35 years. Once I got home and digested all she explained to me, I totally went into a tail spin. I hadn't even begun the taper. After a phone call and messages with no response, I placed a complaint on their website. She finally called me and said I needed more monitoring due to my other issues. She promised we'd have a check in call every Friday. To date, no phone call. It's been 3 months. Needless to say I haven't started the taper. I am absolutely terrified. I just received my first CBD oil that I was hoping to start to wean but read the may be life threatening consequences? I am also on 6.5 mgs of Ropinerole now in addition to 300 mgs of gabapentin. I STILL have breakthrough symptoms. I am disgusted and lost. I made an appt for therapy and am hoping a neurologist closer to home (I can't leave work in go to JH for an hour multiple times a month) and am hoping they will listed to me.

[RosieRow in reply to nickelrenee1]

Hi nickelrenee

I am in a much less awful position than you and am also rather scared of instigating the withdrawal at some point - when I get the support I need. If I think about multiplying what I'm feeling ten or more times over, then I really feel for you.

To be honest, it is reading accounts like yours that is making me all the more determined to go through with it. I don't want to go any further down the line - and I'm only taking 1.5mg ropinirole which, currently, is working very well. I am waiting for a neurology appointment to come through and will start chasing it later in the week if a letter isn't waiting for me when I get back after two nights working away from home. I do want to start coming off before any further augmentation kicks in.

I'm so sad that the John Hopkins Centre isn't giving you the positive support and help you need so I do hope you find a way to find it. I don't have any wise words for you, just moral support as you keep battling on. I'm sure it will be worth it in the end to get off the dreaded DAs.

RosieRow

[nickelrenee1 in reply to RosieRow]

I wish you luck! Sounds like you are doing exactly what I have been. Research and taking it out the next doctor hoping for support. I started on .5 Ropinerole about 5 years ago. You continue to need more and more. I hope this will help you. The relief will not stay at your dosage unfortunately.

[involuntarydancer in reply to nickelrenee1]

I am really sorry to hear you are having such a hard time, nickelrenee and I think you are correct to be cautious given your additional medical conditions. It is disappointing to hear the John Hopkins team are so unsupportive. I had heard that they favourite a cold turkey withdrawal from dopamine agonist which is really torturous. I would have expected, given this, that they would at least provide plenty of support and back-up.

I hope you get better service from a neurologist closer to home. It is miserable when dopamine agonist augmentation sets in and symptoms become so much worse. It does sound as though you will need to eliminate the ropinerole at some stage. Otherwise you will just keep having to increase the dose and symptoms will likely disimprove anyway. I hope you get the support you need to help you through this difficult step.

[Pam34 in reply to RosieRow]

Hi RosieRow

Seems like everyone has answered your queries (Something called work gets in the way of me responding sometimes!!)

I think you go as slow as you want, the main thing is not to go too quickly. i think you are being very sensible.

And I use the same as Involuntarydancer - Solgar one tablet every other night before bed, either on an empty stomach or with some citrus fruit to aid digestion.

Good luck x

[RosieRow in reply to Pam34]

Morning, Pam

I have been looking up the Solgar products and they have 20mg and 25mg. Please can you tell me what strength you use?

Thanks

RosieRow

[Pam34 in reply to RosieRow]

Hi RosieRow

Mine are 25mg. I actually started out on ferrous sulphate 200mg 3 times a day on my doctors advice. Once I got my ferritin level above 100 I switched to this after reading about it on the forum.

That probably doesn’t really help you! I think some people have been successful just using the gentle iron.

To be honest I started the iron after the withdrawal from ropinirole and I can’t really say whether the iron made me feel better or whether it was just the relief of being off that awful drug. I still don’t know. It hasn’t cured my RLS but I still continue to take it just in case with the view that it can’t do me any harm 😄

[RosieRow in reply to Pam34]

Thanks, Pam

It's really useful knowing other people's experience in order to know where to start with mine. Had the blood test today - hope to have the results Mon or Tues! That's quicker than I was expecting! Amazon is showing Solgar 25mg at some exhorbitant price so I shall have to find an alternative source.

RosieRow

[Pam34 in reply to RosieRow]

Think I got mine from Holland and Barrett

[rls_optimist]

Hi, Rosie, you're taking some positive and well-informed steps. I will second what others are saying here, that you may very well need the help of an opioid to get through the worst of the ropinerole withdrawal. However, you may be making it easier on yourself by doing it as gradually as you're planning.

As you withdraw, and afterwards, you will likely need some other medication to compensate for the loss of the ropinerole. The two main remaining classes of medications, as you likely know, are alpha-2-delta drugs like gabapentin, pregabalin, and Horizant. But you'll be discussing these with your neurologist, I'm sure.

Regarding your neurologist: you may be able to get in to see him/her much earlier if you call their office regularly to see if there are any cancellations. I have had good luck calling every 1-2 days, and managed more than once to land an appointment within 1-2 weeks, when my neurologists lag time was 9 months out. Good luck!

[RosieRow]

It's wonderful to hear form you all. Thanks for taking the time to respond. I feel so encouraged and almost excited at the positive nature of what I will do - as soon as it is practicable or necessary to do so.

I will look up the John Hopkins website (I think I may already have been on it, but will check!) - and thanks for the brand name Solgar and the advice about cancellations (I too have taken action like that and been rewarded). Being retired means I'm supposed to have more free time, but my diary still gets chock-a-block. I have already suggested to my GP that I will need Tramadol or something similar. I used to be on Codeine before Ropinirole - but they didn't want to increase me from 45mg, and Ropinirole sounded a good thing to try - oh, if only I'd remembered what someone else told me about DAs and augmentation many years ago).

Hope you're all having a good day!

RosieRow

[Pam34 in reply to RosieRow]

You’ve just made me smile 😊

Don’t get too excited!! That’s not how I would describe ropinirole withdrawal!! But I know what you mean - it’s good to have a positive plan!

[Spudvar]

Hi Rosie

I Have just

[RosieRow in reply to Spudvar]

Hi Spudvar - I have no idea what 'you just' were going to say as there was nothing more than 'I have just' in your message.

[Spudvar]

Hi Rosie

Sorry about last reply'

Should read:- I have just finished a year on ropinirole and started on gabapentin. I did have RLS EVERY evening and night. First night on Gabapentin was a bad night But the next night when I had 2 tablets of 300mg each, no RLS , first time in a year. Today I had 3 tablets (1am, 1 noon.1 night) no RLS so far, fingers crossed. So, check if it is lack of Dopamine or nerve damage. Keep me posted.

Cheers Spud

[RosieRow]

Hi Spud

I'm glad the Gabapentin is working for you - it's great to have any relief!

How much Ropinirole were you taking and how did you make the transition from it to Gabapentin - did you just change medication or did you reduce the Ropinirole gradually? For me the Ropinirole works, until I augment on that dose, which is why I have decided to come off DAs. My thoughts at the moment are to suggest changing to Pregabalin as I seem to remember others saying that Gabapentin is for mild RLS. As I've had RLS since I was a teenager - at least 54 years - I don't think it's likely to be nerve damage but simply genetic.

What do others think?

Rosie