Pramipexole

[Firenze1]

I've been unable to contact Professor Walker. Have had a GP telephone appointment and have been prescribed Pramipexole instead of the Ropinirole I've taken for over 15 years. Can anyone tell me how they have got on with this? Dosage? Do I wean myself off Ropinirole and take both together? Feeling apprehensive however not sure I have much choice!!Thanks

[Madlegs1]

Neither.

Changing from one augmenting DA to another DA, is tantamount to purposive suicide.

Who prescribed this?

Please read any of Sue Johnson replies to posts here, and follow her instructions for changing to Pregabalin or Gabapentin. Also get ferritin checked, and keep a diary for possible triggers.

Good luck.

[Firenze1 in reply to Madlegs1]

Thanks for the replies. I've decided not to take the Pramipexole as it seems it would solve absolutely nothing. I have a follow up telephone consultation with 'A GP' in 2 week's time (never met her and don't know her name) so will request gabapentin or Pregablin. I doubt doctors like that we know better at times however I'm not going to give up just yet! I feel I've been lucky to have managed with Ropinirole for so long however I can't go on like this indefinitely for reasons we all know only too well

[LoisTonya in reply to Firenze1]

I went through this several years ago and when I asked for Gabapentin the GP said it was just a pain killer and. Didn’t prescribe! I’m still on Pramipexole and it’s been OK with occasional increases over the years. I’m now trying to get off it. I have printed Sue Johnson’s advice which I shall take to the GP.

[SueJohnson]

No, no, no. Since you augmented on ropinirole, you will soon augment on pramipexole. Insist that your GP prescribe gabapentin or pregabalin. I think someone else recently posted information on how to contact Professor Walker's secretary for an appointment so hopefully will provide it again. Also there are other doctors that have been recommended if you still can't get an appointment. If so post back here for those names.

[Firenze1 in reply to SueJohnson]

I have today been prescribed Pregabalin by my GP. I think this is progress and a step in the right direction?!? She has told me to stop the Ropinirole. I'm concerned that this is not best practice as I've taken it for over 15 years and would have expected to wean myself off it. I'm so relieved to feel there's hope on the horizon but am feeling apprehensive too. My ferritin levels are 128 which they say is in range however I believe it should be nearer 200? I so appreciate all help, advice, support and guidance given here

[SueJohnson in reply to Firenze1]

You are correct. You should wean off it, not just suddenly stop it. To come off ropinirole, 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 pregabalin it won't help much until you are off ropinirole and your symptoms have settled. Then 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin daily."

128 is fine although some feel that it should be over 200. If you decide to take iron to increase it take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

[Firenze1 in reply to SueJohnson]

Thanks so, so much Sue. I'll read and digest your advice and am shocked the GP advice is to just stop the Ropinirole!! I feel daunted and worried at the moment but am sure in time I'll be glad to be free of the augmentation and all that goes with it

[Joolsg]

I absolutely agree with Madlegs and Sue. You will quickly suffer worsening of RLS again. Pramipexole is another dopamine agonist and you have to get off these drugs.No one has been able to get through to Prof. Walker for weeks, so in the meantime you can start the reduction of Ropinirole yourself now, as per Sue's reduction schedule.

If your GP refuses to prescribe pregabalin or gabapentin, refer them to the NICE guidance or the NHS website. Both mention pregabalin/gabapentin and NICE also mentions opioids.

Ask for a referral to the nearest Sleep Clinic as the doctors there are usually more knowledgeable about RLS than most neurologists.

[67Waterman]

Try his secretary on IBEJI, Ngozi (UNIVERSITY COLLEGE LONDON HOSPITALS NHS FOUNDATION TRUST)

[macramegirl]

I have been taking ropinirole for years. I was initially prescribed 3mg. taken one hour before bed. I started having rls earlier in the day and was put on a 2mg. Neupro patch. It worked well at first then stopped being effective. So now I take 1mg. in the morning , i mg. in the afternoon and the 3mg, at night and it works for me.

[SueJohnson in reply to macramegirl]

You are taking 5 mg of ropinirole. The maximum amount is 4 mg. The fact you need it at different times of the day means you are augmenting but you have been told this before. You really need to get off it and instead take an opioid. When you are ready to do this, post back here and we can give you some advice. Above all don't increase it any more as it will just be harder to get off it.

[macramegirl in reply to SueJohnson]

I have tried talking to my doctor about this but he doesn't want to budge. I'll have to keep trying to convince him. Thank you.

[SueJohnson in reply to macramegirl]

Where do you live?

[macramegirl in reply to SueJohnson]

Columbia, South Carolina.

[RLSofManyYears in reply to macramegirl]

Although you are being prescribed 5mg there is nothing to stop you only taking 4mg. When I was on 4mg I would fall asleep at work and was in augmentation. So you need to reduce from the 5mg to a lower level. Each step will not be easy but take heart - it's easier to reduce Ropinirole than Pramipexole! It took me a year to ramp down from 4mg to zero.

[SueJohnson in reply to macramegirl]

Good you are not in the UK. I assume you are talking about prescribing an opioid. You have 2 options. You can print out the section on opioids in the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... (US doctors are more likely to read it). If your doctor still won't budge you can change doctors. Dr. James Hungerford is highly rated for treating RLS by Healthgrades, The 2nd best one is Dr. Donald Schmechel. However I would ask them if they are familiar with the Mayo algorithm and if they would prescribe opioids if needed.

[macramegirl in reply to SueJohnson]

Thank you for sharing your knowledge. I appreciate it very much. I will share it with my doctor at my next visit.

[Hiboux]

My husband went from Requip to Pramipexole which caused him severe leg swelling he went from 20 mg of furosomide to 80 mg and it did not help removed the Pramipexole and started takin ropinirole 2mg and the swelling went back to his normal 20 mg furosomide immediately. I would watch for the swelling...