RLS medication issue

[Agent54]

I am trying to wean off Ropinirole. I did start some gabapentin. Ropinirole gave me augmentation. Do I take Ropinirole first in evening before gabapentin?

[Elffindoe]

Both ropinirole and gabapentin should be taken 2 hours before symptoms normally start or two hours before bed. You can take both at the same time.

Do not take magnesium or an antacid at the same time.

A good schedule for weaning off ropinirole is to reduce the daily dose by no more than 0.25mg every two weesk. Any bigger reductions may lead to more severe withdrawal effects.

The temporary withdrawals should fade in two weeks.

Withdrawals consist of worsening symptoms, sleeplessness and possible depression. They can occur within 24 hours of a reduction.

The starting dose of gabapentin for RLS is 300mg per day, if under 65 and 100mg per day if over 65. Thye dose can then be increased in 300mg (or 100mg) steps until the drug becomes effective.

However, in practice, firstly it takes a few week of the drug to become effective, it's not possible to say how effective it's going to be until the ropinirole has been stopped for at least two weeks.

Since the minimum effective dose of gabapentin is about 900mg, then it's probably not a good idea to increase it to any more of that whilst still taking ropinirole.

People with RLS should always consider iron therapy as the first treatment in the long term. Iron deficiency is the main cause of RLS.

Effective iron therapy can eliminate the need for medications in up to 60% of sufferers.

I suggest you read other posts about this including pinned posts.

People with RLS should also identify and if possible eliminate anything which might be making their RLS worse.

Please also read other posts about these. I have only just written to another member.

You may find this link helpful

mayoclinicproceedings.org/a...

[Agent54 in reply to Elffindoe]

Thank you. This gives me a start. I, too have a GP who wants me to just drop the Ropinirole. No one at this clinic shows knowledge of RLS. I need alot of help in finding a direction to overcoming.

[Elffindoe in reply to Agent54]

Stopping ropinirole suddenly, could potentially kill you. It's unlikley, but possible. Any health professional who would tell you thar then is actually danagerous.

I'm sure it's not deliberate, but it is very worrying.

If you're unsure what to do, just come to this forum, somebody will respond to any question you have.

[Joolsg in reply to Agent54]

Where are you in the USA? I have a list of clinics in the USA and help emails in various states. Although in the UK, I'm a member of rls.org the US foundation and it's the best money I've ever spent. Free webinars by top RLS experts and great help sheets and magazine. It's $35 a year.

[KickininAz in reply to Joolsg]

Joolsg are there any RLS specialists in Arizona, USA, on your list? I am scheduled to see a doctor next week, finally after a long wait. But in case he is not overly helpful, I would like a backup doctor I could possibly see. Thanks in advance.

Cathy in Arizona

[Joolsg in reply to KickininAz]

Hi Kathy,There's a Centre of Excellence in California and one in Texas. There's also a help group in Arizona.

Info below.

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[KickininAz in reply to Joolsg]

Joolsg, I thank you soooo much for this information. It is time for me to get some help that actually works. Of all my health issues, and I have a few being now 70 years old, the only one that truly negatively affects my quality of life is the RLS. Doctors so often seem to brush it off. As an example, three weeks ago I had an upper GI. The results showed several ulcers plus a precancerous condition called Baretts Esophagus. My doctor prescribed famotidine. I have not been able to sleep, my RLS has been ten times worse. Finally I Googled famotidine and RLS. Guess what.....it is associated with RLS worsening or actually developing RLS for the first time. My doctor should have been aware of that, right? Turns out they just brush aside RLS, seems like they think it is a psychological problem. Anyway thank you for the links to doctors who understand the true hell that RLS is.

[Joolsg in reply to KickininAz]

I totally agree. All PPI cause or worsen RLS. The US rls foundation has lists of meds that trigger RLS and help sheets for medical professionals to access. Joining costs $35 & the help and support and info is worth every penny.Even though this is a UK site, many of us are members and 3 of us have just featured in their article on raising awareness of RLS.

RLS is only known by a few specialists in the world. Here in the UK it's not taught at medical schools or during GP or neurology training despite affecting 1 million people. 100 000 severely.

In the US knowledge is poor except in the big cities on the coasts. There are around 12 million in the US with RLS.

So many serious diseases that can't be proved by blood or other tests are treated as psychological. ME and long Covid are amongst them.

We have to keep fighting.

PS For ulcers & gastric issues, a really good pro biotic like VSL or Symprove and adding prebiotics can make a huge difference.

Good luck & let us know what happens.

[Agent54 in reply to Joolsg]

Could you send a picture copy also of the remainder of the list. I am in Illinois and would like to see the person available in Carterville?

[Joolsg in reply to Agent54]

My pleasure

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[Joolsg in reply to Agent54]

2 contacts in Illinois

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[Joolsg in reply to KickininAz]

The AZ help email. She may know an expert near to you.

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[KickininAz in reply to Joolsg]

Thank you!!!!

[Agent54 in reply to Joolsg]

Thank you. Carterville is right around the corner. I'm going to the worse of getting off Ropinirole for the last 1 mg., which I will need all the help I can get. The GP's I have gone to have that "just get off it, don't take it" attitude and not the gradual decrease.

[Joolsg in reply to Agent54]

If they could only see what most of us go through getting off that last 1mg. My husband was distraught & begged me to go to A&E ( ER) but I knew they wouldn't know what to do. I went 4 days with zero sleep & constant, all over body jerks. I fell over badly from exhaustion & the only thing that saved my life was illegal cannabis cigarettes sourced by my adult children. Cannabis gave me 30 mins sleep.It should be standard treatment to admit us to a rehabilitation ward for help and monitoring.

I know of only 2 or 3 people who haven't had a traumatic withdrawal from DAs.

I hope they can direct you to a knowledgeable doctor who can prescribe opioids and cannabis to get you off the last 1mg.

Good luck.