ropinirole: I have been taking... - Restless Legs Syn...

Restless Legs Syndrome

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ropinirole

Pensionistaspain profile image

I have been taking ropinirole for more than 40 years. 1 mg at night. It works for me but now I am terrified because apparently it has been withdrawn and I can’t get it in any of the farmacias in the Valencia region. I tried gabapentin - no effect at wll. I gave just been prescribed pregabalin and didn’t sleep for two nights. I am beginning to panic that when my stock of ropinirole runs out I will go crazy with lack of sleep. I have tried acupuncture, TENS, raiki, taking iron tabs even though my iron levels are fine, magnesium didn’t help, nor did turmeric. I am 75 and just want to be able to enjoy life!

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Pensionistaspain
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SueJohnson profile image
SueJohnson

Can you get pramipexole? If so, you could substitute that for ropinirole and should get the same effect. The equivalent dose is .25 mg. If not and gabapentin didn't work for you, you may not have taken enough nor taken it long enough. You need to come off the ropinirole slowly. Reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. On the gabapentin, beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. 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 at Https://mayoclinicproceedings.org/a...

SueJohnson profile image
SueJohnson

Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. 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 ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice.

Joolsg profile image
Joolsg

Can you switch to the Neupro Patch? That contains Ropinirole so switching to the 1mg patch should cover you.

I'm sure other dopamine agonists are available in Spain.

If for some reason it is impossible to source, don't panic as many people on here have to get off these drugs because their RLS worsens because of the drug itself.

If you are forced to get off dopamine agonists because the Neupro patch and Pramipexole are also not available, you can get through withdrawal and pregabalin or low dose opioids will cover your RLS

In the meantime, ask all nearby pharmacies about the supply of Neupro patch ( Rotigitone) and Pramipexole

Pensionistaspain profile image
Pensionistaspain in reply to Joolsg

my son, bless him, has sourced some ropinirole in the uk, so I am more optimistic and hope long may the supply continue!!

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