Change of meds

[suzsull48]

Pramipexole

I am experiencing augmentation after being on Ropinerole for roughly 20 years. He has prescribed Pramipexole which is another dopamine agonist. I’m not sure if one would be any better than the other or if I’d be better with another form of medication

Has anyone had the same sort of experience

[Joolsg]

Please do not take the pramipexole!! Your doctor is clearly ignorant about RLS. If you have been on Ropinirole for 20 years it is inevitable that you augmented because your D1 dopamine receptor is screaming out for a dopamine hit, becoming over excited and causing augmentation. Switching to anther dopamine agonist will cause you to augment again VERY quickly. Please read the pinned post (right hand side of the web page) and print off to show GP. Your ONLY solution is to reduce the Ropinirole very very slowly by 0.25mg every 2-3 weeks. You will need to take a minimum of 3 months, preferably 6months to reduce the dose and you may well need an opioid like tramadol or oxycodone to help with severe withdrawal symptoms.

Some US experts believe you should then go drug free for a month to observe your baseline RLS. However, this can be traumatic if youhave severe RLS and the safer option is to switch to alternative meds like pregabalin or gabapentin or a low dose opioid like oxycontin about 4 weeks before you drop the last dose of ropinirole.

Lack of knowledge amongst GPs and neurologists in the UK is why RLS UK is running the campaign to get RLS included in the curriculum. See the pinned post on the campaign.

If you're not in the UK, ignore my last comment.

Many of us have been in your shoes and managed to get off Ropinirole. It's tough ( very tough) but possible and your RLS will be far less intense and stop affecting other body parts.

[Hidden in reply to Joolsg]

I love the imagery, screaming D1 receptors!

Sounds like a good old film where right was right and wrong was wrong with nothing in between, starring John Wayne.

Flying bottle necks (Or was it leather necks).

Other possible film titles

"Attack on glutamate!"

"Dopa, Dopa Dopa!"

I'm having a cultural day.

I can think of many possible thrillers or dramas based on the RLS theme, Twitching Heights, 39 steps to stopping pramipexole, etc

I know --- get a life Manerva.

Sorry suzsull48, my reply to you is NOT a joke.

[Hidden]

OMG!!!!!

I am assuming the "he" is a doctor and hopefully, at least, qualified, despite being apparently so ignorant.

I think it's truly amazing you've managed to stay on Ropinirole for so many years. Is it the same doctor that prescribed it then?

Dopamine Agonists i.e. pramipexole, ropinirole and rotigotine, ALL cause augmentation.

Rotiogitine has the least risk of augmentation, pramipexole the worst.

So he is advising you to replace a medication which has caused you augmentation with another one that will make it worse.

The good news is that you don't need to take his advice nor do you need to take the pramipexole.

I suggest FOR NOW, you continue to take the ropiniriole.

Here's a summary of how to treat augmentation

1) IRON

Have blood tests for serum iron, transferrin saturation (TSAT) and ferritin. It's also a good idea to have a Full Blood Count,

The results of this can tell you if you might benefit from iron therapy and if so, if it's safe to undergo iron therapy.

NOTE that iron deficiency is the main cause of RLS.

What the results mean -

a) If serum iron and haemoglobin are "low" and TSAT < 16% then you may have Iron Deficiency Anaemia (IDA). If so, then you need iron therapy to correct the IDA.

b) If the above are "normal" and only if they're normal, but ferritin is below 75ng/mL then you may benefit from oral iron therapy for your RLS. If your ferritin is >75 but <100 then an IV iron infusion may help.

see this link

sciencedirect.com/science/a...

2) AGGRAVATING FACTORS

You need to look at any other medications you take now and again or regularly for any other condition. This includes any prescribed or any over the counter medicines.

There is a LONG list

It includes antidepressants, sedating antishistamines, antacids and antiemetics for example.

If any of these are prescribed, then discuss with your doctor about discontinung them or finding an alternative.

If you wish, reply with a list of what you're taking and I can see if they're a problem.

There are many other factors that make RLS worse that aren't medication and it's a good idea to look these up when your augmentation is under control if not NOW. No point attempting to dioscuss these with your doctor.

See the recent post in this site about diet and RLS for example

healthunlocked.com/rlsuk/po...

3) MEDICATIONS

STOP taking ANY dopamine agonist.

WARNING!!!

Do not stop taking the ropinirole suddenly, cold turkey!

a) This can potentially cause neuroleptic malignant syndrome. This is often fatal.

b) It can cause withdrawal effects to start within 24 hours of the last dose. After 20years these are likely to be horrendous, This is likely to last some weeks at least.

c) It can cause DAWS (Dopamine Agonist Withdrawal Syndrome) which includes mental health problems and can last for months or over a year.

You will need to "wean" off the ropinirole VERY slowly. This means reducing the daily dose by a small amount, then staying on that dose for at least 2 weeks before trying a another reduction. I suggest reducing by no more than 0.25mg. Some people find even this too much.

I hope Joolsg will reply to you.

You will still experience witdrawal effects each time you reduce, but they won't be as bad.

You may need other medication to help you with the withdrawal. (sleeping aids and/or an opiod).

You will find as the dose of ropinirole is reduced, despite withdrawals, the augmentation aspects will diminish.

You will need a replacement for the dopamine agonist which you can start before finally stopping the ropinriole.

The recommended "first line" alternative medications for RLS are the "alpha 2 delta ligands" either pregabalin or gabapentin. In fact now they're recommended as THE first treatment for RLS and the dopamine agonists are NOT recommended.

see this link

pubmed.ncbi.nlm.nih.gov/274...

Please note that once you've suffered augmentation, these may not be effective. They may not help with augmentation and they may not help with withdrawals.

You won't really know until at least a few weeks after you've completely eliminated ropinirole. If not, then the next step is a "second line" medication.

4) HOLISTIC NEEDS

Not a priority, but it may be useful fo you to carry out some kind of assessment of how your RLS has or is affecting all other aspects of yourlife and if these can be improved in any way, and how.

It may be also possible, that you will never get your RLS 100% under control and you may then need to think about how you may be able to cope with this.

Next step

I "suggest" the following, it's your choice

Go to the following web page and get this information to your doctor before or when consulting them. Print it out and send it/show them, or give them the URL.

Of course, first make sure you are completely familiar with the contents of this page.

Make sure they know that this page is published by the National Institute for Health and Care Excellence (NICE)

Tell them that you cannot consent to taking pramipexole.

Inform them that you intend to wean off ropinirole over at least 3 months and that you will need a conintuing prescription (1mg tablets).

Ask them for a prescription for a recommended alternative, i.e, pregabalin or gabapentin.

Ask them if they're willing to prescibe a sleeping aid (if necessary) or an opiod (if necessaary) to help with withdrawals.

Ask for the blood tests.

Here is the link to the NICE web page

cks.nice.org.uk/topics/rest...

good luck

[Madlegs1]

My head hurts.

I must stop banging it against the stone cold wall.

My heart aches for you. For what you are going to have to go through.

My fists clench in outright rage at the horrendous treatment your doctor is trying to subject you to.

My brain is so sad at the abject ignorance we come across almost every day.

May you have the strength to see all this through.

Tashi.

👁️

[sleeplessinKY]

I have also been on Ropinirole for 25+ years. At the time it was a lifesaver for me and I've been lucky enough to stay on a fairly low dose all these years with only one increase about 10 years ago. (.25mn to .5mg) The past year however augmentation started and my symptoms became increasingly worse. I did LOTS of reading and even put a call into John Hopkins to try to get an appointment. My doc here finally listened and we decided to SLOWLY try to get off Ropinirole. We added gabapentin 100mg the first week increasing to 200mg second week the 300mg the third week. Once at 200mg I split my Ropinirole pills in half. First week was a little rough but now I"m doing pretty well. I also found at this dose I cut my gabapentin back to 200mg. When I lower my Ropinirole again I may need to increase gabapentin back to 300. From what I read withdrawal from Ropinirole can take 6 months or more. I'm on month 3 and so far so good. Will update when I lower dose again. My goal is to completely stop ropinirole AND gabapentin. If I must use medication I will eventually switch to Horizant which FDA is now saying it's the preferred drug for RLS.