Ropinirol ore Sifrol. : when you get... - Restless Legs Syn...

Restless Legs Syndrome

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Ropinirol ore Sifrol.

Johsschmidt profile image
8 Replies

when you get augmentation and have to change medicin. Can i change from sifrol to Ropinirol ? (I can’t use Gababentin).

best John Schmidt

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Johsschmidt
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ChrisColumbus profile image
ChrisColumbus

You *can* try ropinirole after augmenting on pramipexole (Sifrol) but while this may initially work you are likely to augment on ropinirole as well - and perhaps more quickly than before.

You say that you can't use gabapentin: what were the effects and how long did you try it for? Did you try pregabalin - while being essentially the same thing, some find that one works better than the other.

Have you/your doctor considered a low dose opioid instead?

Johsschmidt profile image
Johsschmidt in reply to ChrisColumbus

❤️🙏

ChrisColumbus profile image
ChrisColumbus

I see that you've had advice from SueJohnson and Joolsg amongst others about other medications that could be causing you problems. I only scanned this quickly: have you had a full panel iron blood test and what were the results?

Johsschmidt profile image
Johsschmidt in reply to ChrisColumbus

gabapentin had no effect on me etc. only became more and more absent and distant from it. have tried several times with my 32 years with the disorder. I have just been on morphine for 2 months in the hope that the body could absorb sifrol again, which for me is what has the best effect. last year I had a good period with Madophar and low dose Natraxon 3 mg (LDN). But obviously the body won't be up for it anymore. It's a terrible affliction :( Thank you so much for your reply

Joolsg profile image
Joolsg

You can BUT augmentation will happen again within a matter of months. It's why these drugs are no longer prescribed by RLS experts and why they're no longer first line treatment in accordance with the Mayo Clinic Algorithm, the updated, best treatment plan written by the world's top RLS experts.Sadly, UK and Europe are about 10 years behind. Doctors still prescribe these drugs and increase the dose when they stop working. For drug naive RLS patients, the following applies:

1. Get full panel, morning, fasting blood tests and ensure serum ferritin is above 100, preferably 200 via one dose of iron pills at night OR iron infusions.

2. Review and safely substitute trigger meds ( anti depressants, sedating anti histamines, statins, beta blockers, PPI gastric meds).

3. If 1 &2 don't help, start pregabalin or gabapentin.

4. If 3 doesn't help, start a long half life, low dose opioid like Buprenorphine or methadone.

In your case, you first have to reduce Sifrol very slowly by half a 0.088mg pill every 2 weeks. It will cause RLS to flare up and worsen. Ask for a low dose opioid like codeine, tramadol or oxycodone to settle the withdrawals.

It will take months, but once off Sifrol your dopamine receptors will start to settle and your RLS will be less severe. Start pregabalin or gabapentin about a minth before you stop the last dose of Sifrol. They won't help much until around 3 weeks after the last dose of Sifrol.

Most of us on this site have experienced augmentation and brutal withdrawal. It's tempting to give up as withdrawal is so difficult, but your RLS will never settle until you get off Sifrol.

We move on to different meds or some people find they're RLS free after an iron infusion or by taking ferrous bisglycinate every night before bed.

Read and research this site for a few hours. Read all posts headed Pramipexole or Ropinirole.

Doctors aren't taught anything about RLS or dopamine agonists so we have to research for ourselves. Sad, but true.

SueJohnson profile image
SueJohnson

To elaborate on what Joolsg said : Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you have the full iron panel stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

How much gabapentin were you taking and did you split the doses so you were taking them 600 mg 2 hours apart? According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin." And did you allow a month for the side effects to go away?

If they didn't go away after a month, you might want to try pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. The beginning dose is 75 mg. Start it 3 weeks before you are off sifrol although it won't be fully effective until you are off it for several weeks. After that increase it by 25 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg."

SueJohnson profile image
SueJohnson

Again to elaborate on what Joolsg said: To come off sifrol, reduce by half of a .088 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 to increase your morphine temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Did you ever 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 at Https://mayoclinicproceedings.org/a...

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I know I asked you this before, but I don't believe I got an answer.

Johsschmidt profile image
Johsschmidt

❤️🙏

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