Back to square one but grateful

[HipHop1972]

Hello friends, having already reported that I’d attempted to reduce my Ropinirole medication prior to my visit to see the GP one back on 6mg tablets spread throughout the day and night, Sue agreed that it was probably the best course of action and I’m again getting some much needed sleep and the pains in my legs have gone. The severity of my withdrawal symptoms certainly taught me a lesson and one that Sue has been preaching on probably long before I joined the forum. My GP has prescribed 0.5mg and 0.25 mg Ropinirole and advised me that by his calculations it would take 40 weeks to be free of Ropinirole a very long time but he will monitor my progress and if it’s tolerated then maybe speed it up a bit. My resolve is strengthened knowing that so many of you have already completed that journey and say a big well done.

I know that I may have missed some posts directed to me that I’ve not thanked members for or provided an answer and send apologies but still getting my head around the workings of this forum, ha ha but if nothing else I am known for my perseverance

Best wishes alk

[SueJohnson]

I'm glad you are getting your sleep and your pains are gone. And that your doctor is onboard. 40 weeks is a long time but hang in there, you will make it.

[HipHop1972 in reply to SueJohnson]

Thank you Sue, As the song says, I WILL SURVIVE

Best wishes

[Joolsg]

The top US experts advise that you take at least 6 months, and up to a year to get off these drugs when you have been on very high dose for years. So, take it slowly and you will get there.

[HipHop1972 in reply to Joolsg]

thanks Joolsg will do.

Best wishes

[rls-insomniac]

 Hi Hip-hop.

 Like you, I was taking an extremely high dose of ropinirole. I was taking up to 9 mgs, sometimes more, daily. Weaning off is a slow and arduous process. It took me over a year to finally get off the stuff. Don't be tempted to rush it. Take it very slowly. It won't be easy but you'll be glad you did in the end. All the best.

[HipHop1972 in reply to rls-insomniac]

Hi rls-insomniac. And I thought i had problems with 6mg cant imagine what you went through, but you succeeded and all the testimonies of our brothers and sisters in the group who have travelled the same road and reached the end are very encouraging and I thank you all.

Best wishes

[Nightwalker6]

good luck my friend. I’ve been there. It’s not easy, but it’s necessary. You will feel much better once you have shaken the DA off.

[HipHop1972 in reply to Nightwalker6]

Hi Nightwalker6

Nightwalker and Hip-hop sounds a bit like a wandering minstrel duo. So glad you came out the other end

Best wishes

[Birdland]

Yes, so many of us have withdrawn from DAs. I took Ropinirole for 16 years and was up to 8 mg per night. It took 3 years to completely withdraw because I took a year break in between while I held steady at 1.5 mg. Go at your own pace. It’s one of the most difficult things I have done. Like fending off a demon. But now I can look back and say I looked that demon in the eye and succeeded. (Might sound dramatic to those who don’t understand.) I too am known for my perseverance. It’s a handy quality to have while going through this process. As well as tenacity. Hope you sail through with as much ease as possible.

[HipHop1972 in reply to Birdland]

Hi Birdland, love the name and thanks for the encouragement. we were placed in this position by the medical profession who at the time thought DAs were the real deal but didn't have the research on long term effects. Anyway I've got an understanding GP now who will support me and hopefully do some research into RLS.

Best wishes

[Meagain22]

But what do people do to replace the Ropinirole? I’m presuming that the restless legs don’t actually go away after you have come off the DAs? How do you manage the condition?

I’ve been taking Ropinirole for around 10 years now, but at much lower doses than many people, 2.5 mg per day, and I am very careful not to let that increase at all. It still works fine for me.

So what would be the purpose for me of stopping them? Do people just manage without any meds at all? As far as I’m concerned it is a life-saver; I’m convinced I would no longer be here if I hadn’t been prescribed it many years ago.

[DataRN in reply to Meagain22]

Trust me, you want to get off any and all doses of Ropinirole. My dose was never higher than 4mg but even lower doses can and usually do lead to augmentation over time. The damage Ropinirole does to the receptors in our brains is irreversible. I don’t wish RLS or DA’s on anyone. Augmentation and weaning off DA’s is a leading cause of depression & suicide of people with RLS. It’s no joke. Finding a doctor who understands is no simple task either. I am fortunate to be treated by one of the top RLS specialist in the world. I hope you are able to find an alternative treatment. Back when I was only taking 2.5mg of Ropinirole, I wish I knew what I know now. I would have found a doctor who understood the connection between ferritin and RLS. According to my doctor, now many people who never get introduced to DA’s are able to control RLS symptoms with iron infusions alone. Hind sight.

[SueJohnson in reply to Meagain22]

There are a number of medicines one can take to replace ropinirole, chief among them being gabapentin and pregabalin. Others are low dose opioids, THC and CBC gummies, dipyridamole, kratom, diet, etc. And improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Also stopping things known to make RLS worse for many. You don't need to stop taking ropinirole. Up to 70% of people will suffer from augmentation, but you may be one of the lucky ones. You be aware of the signs of augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist atHttps://mayoclinicproceedings.org/a... . If you haven't had your ferritin tested, When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test, fast after midnight and have your test in the morning when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not , post them here and we can give you advice. When you get your results, if your ferritin is not over 100, post them here and we can give you advice.

[Ciduoc]

you should be able to take another rls medication like Gabapentin while reducing Ropinerole. I did this and had very little trouble getting of Ropinerole, which had greatly augmented my rls.

[HipHop1972 in reply to Ciduoc]

Thank you Ciduoc, Will speak to my GP at next appointment.

Best wishes