Hi! I’ve completely stopped low dose pramipexole and am now taking gabapentin; my symptoms have got horrendously worse. Two days in now, does it get any better?
My dr said there was no need to taper off the pramipexole but I feel like I’m addicted to it now, I need it!!
Start back on the Pramipexole.Your doctor is criminally negligent telling you to stop cold turkey. These drugs are dangerous and cause severe withdrawal symptoms and serious complications if stopped cold turkey.
This is why GPs in the UK need to be educated about RLS and dopamine agonists.
Restart the Pramipexole, change GPs, and slowly reduce over a MINIMUM of 3 months by half a 0.088mcg pill every 2 to 3 weeks.
Print off the Mayo algorithm and hand to your GP and tell him to read it.
Gabapentin takes at least 3 weeks to be effective for RLS so by all means start taking it and increase by 50mg every 3 days up to the average dose of 1800mg.
However you won't benefit from Gabapentin until about 2 weeks after the last dose of Pramipexole.
Links attached.
Sadly, the only way you'll get decent treatment in the UK is to research extensively yourself.
Doctors in the UK know nothing about RLS, as you have discovered.
I'll bet he didn't take bloods to ensure your serum ferritin is above 100, preferably 250 either!
There are increasing negligence cases against doctors and neurologists and you may want to consider consulting a lawyer.
To advise cold turkey from Pramipexole is terrible.
pubmed.ncbi.nlm.nih.gov/236...
mayoclinicproceedings.org/a...
I thought you might be interested in another case where a forum member was actually prescribed 24 times the recommended dose of pramipexole which is even higher than the recommended dose for Parkinson's !!! He lives in Canada and I have referred him to my daughter's law firm and also advised him to report the doctor to the medical board.
I despair Sue. It's worldwide. Such ignorance and negligence and we suffer the consequences.
Absolutely the correct advice. There are consultants in the UK who specialise in RLS, I have found one who is excellent. I am also under a haematologist in Plymouth who is very well informed. I am educating my GP.
Hello JoolsgPlease can you give me some advice. I have been taking Roinirole for about 6 years and reached 2mg this time last year. I watch this forum and tried on two occasions to get down and managed to get to 1mg but then went back up again. At the moment I am taking .75 and suffering with nausea, back pain and relentless rls. I am only into the first week of .75 and hope it will improve. I have managed to procure some Gaberpentine but only lmg and 200 tablets? Should I take the Gaberpentine and if so how much. Any further advice would be much appreciated. How would we cope without this forum. Many thanks
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 at
Https://mayoclinicproceedings.org/a... 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 numbers. You want your ferritin to be over 100. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with its absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You will suffer and may need a low dose opioid temporarily to help out with the symptoms. But in the long run, you will be glad you did. On the gabapentin, beginning dose is usually 300 mg gabapentin or 100 mg if you are over the age of 65. 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 don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin.
Sue has set out excellent detailed advice.Ropinirole comes in 0.25mg tablets so ask for these and reduce by 0.25mg every 3 weeks. Every time you drop a 0.25mg pill, the RLS will flare up and become unbearable. It should settle and only then drop the next dose.
Apply for medical cannabis now through Project-twenty21 so you have a supply of cannabis to vape when the withdrawal gets tough. I used it in 2016, before it became legal and it was the only thing that helped the terrible withdrawal symptoms.
Ask for tramadol or Oxycontin from your GP and let them know withdrawal from Ropinirole is hellish and more difficult than getting off heroin for the vast majority.
Take 2 weeks off when you stop the last dose as you'll get little to no sleep and constant, severe RLS. You should also have someone with you at night as you have to keep moving but exhaustion causes falls.
The gabapentin should be started 4 weeks before last dose of Ropinirole and increase to 1200 or 1800 at night, taken as Sue advises. It won't make any difference until the Ropinirole withdrawal has ended- about a month after the last dose.
If gabapentin doesn't help after 2 months, consider seeing Prof. Walker at Queen Square for Buprenorphine as that works for most refractory RLS.
I absolutely agree with Joolsg.
Thank you so much for your responses, I really appreciate it.
I have been sent for a blood test (which includes iron, ferritin levels, b12 and thyroid) however, thanks to having to book now I can’t get in until mid March.
I will go back onto pramipexole and slowly taper off, alongside the gabapentin. I think I knew in my gut that it wasn’t right to go cold Turkey.
It’s such a horrible, frustrating thing to have.
Thank you for your support.
Sadly, we have to be experts in our own disease because UK GPs and neurologists know very little, especially about dopamine agonists and safe withdrawal. Read all you can about dopamine agonists and just put pramipexole in the search box. You'll see nearly everyone has similar issues with it.We all help each other on here from experience.
Reduce slowly and start taking the gabapentin about 4 weeks before you stop the last dose of pramipexole. It will still be hellish with little or no sleep and constant RLS. Take some time off work and make sure you have someone with you at night.
Once off the Pramipexole, the RLS reduces in intensity and after 2 weeks the gabapentin should work. Only take it at night as otherwise it makes you dizzy in the daytime and most people's RLS only starts at nighttime. Side effects such as weight gain and water retention and dizziness resolve after a few months. If Gabapentin doesn't help after 2 months, consider switching to a low dose opioid.
If the withdrawal from pramipexole is very difficult, ask your GP for a low dose opioid like tramadol or oxycontin. If he refuses, refer him to the NICE guidance on Targinact for RLS.
Cannabis really helps with sleep during this stage and you can get it legally through project Twenty21.
Let us know how it goes.
Amazing, I’d never heard of project 21. Thank you so much.I’m actually looking forward to being back on my pramipexole tonight so I can actually sleep! Definitely starting the slow withdrawal though.
Thank you so much for taking the time to reply, I really appreciate it.
I was also yanked off pramipexole without tapering. It was the worst 10 days of my life, and a year later I am still supremely messed up. The withdrawal broke my brain. And yes, both out doctors totally mishandled the issue, and they should have known better.
Trust nobody. Doctors are NOT aware of how to treat common diseases like ours, even those who do it on a daily basis. I'm so sorry your doctor is crap, too. 
Joolsg makes a lo of good points. You have been on a Dopamine Agonist and it is not replaced by a selective pain killer. Depending on the underlying cause, Gabapentin may work, but titration off pramipexole is important. I'm on a similar DA, Ropinirole, and reset annually, going off the DA completely for a month, but it takes ten days to titrate down from 2mg. May I ask why you are trying to get off pramipexole?
There is an excellent neurologist in Bath, I had to pay but it was worth it. He is completely up to date with RLS. I would complain about the advice from your gp. I have also had an iron infusion on the nhs.
Have you had your ferritin checked? When you see your doctor ask 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 as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. If you take magnesium take it at least 2 hours apart since it interferes with its absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
Hi SueJohnson,
I was hopeful that my iron was low, so I could just take a supplement to see improvement in my severe PLMS, but my tests showed:
TIBC: 270 ug/dL
UIBC: 157 ug/dL
Iron: 113 ug/dL
Iron
Sat: 42%
Ferritin
Serum: 406 ng/mL (flagged as high)
Transferrin: 214 mg/dL
From what I understand, the iron blood work may not totally reflect the actual iron levels in the brain, which is the real issue, right?
Pramipexole was a nightmare after only 3 months. I started augmentation and experienced intense RLS that was very troubling. It made me realize how rough it must be for some suffers. Mine is typically mild to annoying some evenings. It was the PLMS that they were trying to treat. My Dr. told me to taper off and gave me gabapentin to start taking as I tapered.
I seems that the gabapentin caused itching ankles and wrists (pruritus). I was only up to 200mg a night and after a few days the itching started, so I backed off. I see from the doses mentioned in this thread that I was no where near therapeutic dosage. Maybe I need to start back and see if the itching returns and try to push through it.
Itching is a side effect for some so likely to continue, but you can try.
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