Paper on meds that help DA withdrawal

[Frustrated-RLS]

Hello, can anyone please point me to a paper that details the drugs that can assist with dopamine agonist withdrawal, so that I can share with my doctor? I am stepping down from ropinirole now (due to augmentation, of course) and it is horrible. My doctor, who doesn’t know a lot about RLS (but is open and will read what I send him) has prescribed 15mg/500mg co-codamol but this is just not sufficient. I have seen in forum posts the other opioids that people have successfully used but I seeking this info in a published paper if possible. Thank you!

[Madlegs1]

Matt Finch ( Google him) has a lot of good advice for coping with withdrawal. Specifically opioids, but symptoms are similar. I remember linking to a particular post he made with such a list and strategies. But I'm sure, if you search on his site, you will find it.

Just ignore his hard sell for his products and courses.😜😎

[Joolsg]

n.neurology.org/content/lew...

Interesting that there aren't any papers on tapering off DAs or the meds to help.

I can only find articles on DAWS and the risk of suicide when tapering off them.

I had no idea Robin Williams was tapering off DAs when he committed suicide!

I have the withdrawal schedule from Johns Hopkins but that is under Dr Earley and they favour no drugs at all during the tapering or for 12 days thereafter. That's really, really tough.

Dr.Buchfuhrer favours an opioid like tramadol or Oxycontin and his book 'Clinical Management of RLS' states this.

Hopefully your doctor will accept this and prescribe opioids and cannabis to get you through it.

'

[dana786 in reply to Joolsg]

Hi Joolsg, were you able to find the complete article from Dr. Earley with regards to DA withdrawal? If so could you lease share. I still only have a partial schedule.

[Joolsg in reply to dana786]

Dr Earley advises a slow withdrawal but doesn't specify doses. From the posts by people on this site, the recommended schedule for Ropinirole is reduce by 0.25mg every 2 weeks, for Pramipexole, reduce by half a 0.088 pill every 2 weeks.The Johns Hopkins Schedule then discusses what you can expect after stopping the last dose. As Dr Earley recommends a totally drug free period of 14 days after stopping the last dode of dopamine agonists, he lists the withdrawal effects. I took a screen shot when someone posted the schedule and will try to add it. But if it doesn't appear I will set out below as well.

Day 1-4. You will get no sleep at all over the first 48 hours with severe all over RLS. This will be the worst stage.

Day 5 - 8 The RLS will still be very severe but you may get an hour or more sleep.

Day 8-10 The RLS should start to settle and you'll get 3 or more hour's sleep.

Day 11-14 You should find the daytime RLS improves and you'll get 5 hour's broken sleep.

The Johns Hopkins schedule does not allow any medications like pregabalin, gabapentin, horizant or low dose opioids during the 'wash out period' but very, very few people can cope with such a brutal withdrawal. Only those who have been on very low doses for a short period seem able to get through it.

Most people start pregabalin or gabapentin about 4 weeks before the last dose of Pramipexole or Ropinirole and most also require a low dose opioid like codeine or tramadol to take when the intense withdrawal is too much. I also used cannabis, some people use Kratom.

Text

[dana786 in reply to Joolsg]

Thank you so much!! Have had RLS for over 30 yrs, and was experiencing awful augmentation on Ropinerol. Have been decreasing Ropinerol since the 1st of June. I am down from 8mg. to 1mg. and am experiencing the most violent neurological symptoms throughout my body (chest, arms, legs, back) that change from nite to nite. Taking 0.25mg. Klonapin to help with withdrawal. Don't know if it is really helping Don't know if I will be able to go totally off the Ropinerol for the 14 day holiday. It was helpful to hear your description of how variable the withdrawal symptoms can be. The Medical Medium suggests that many people experience RLS secondary to Mercury toxicity. Have been following that detox program. (hope, hope, hope)I have been e you soonHave been keeping my serum ferritin levels and iron up to Hopkins levels. Curiously, I contacted Johns Hopkins to see about getting assistance there. I got an email back saying they didn't manage clients with my diagnosis (RLS) any more!!!!! I called and spoke with them and they were insisting that they did not treat clients with my diagnosis. Go figure. Thank you so much for getting back to me. Blessings.

[dana786 in reply to dana786]

PS. I have also been using Kratom during the withdrawal. It does help.

[Joolsg in reply to dana786]

I wish you strength. I went through it in 2016 & there were times I didn't think I'd make it. 4 days without sleep & constant all over violent spasms & jerks was horrendous. But it does settle.Cannabis really helped and I'm sure kratom will help you.

I'm surprised Johns Hopkins said they weren't taking new patients. Very strange.

Stay strong and good luck. You will be so glad you stopped Ropinirole. The intense RLS goes away and you can visit the cinema and travel long distances in the car once you find the right combination of meds.

[Elffindoe]

I'm afraid I don't know of any papers on the use of opioids to help with DA withdrawal.

Hopefully you know that the main thing is to reduce the dose very slowly. The smaller the reductions, the less the withdrawals should be. It's also important to let withdrawals subside long enough between reductions.

In the UK, guidelines do suggest that codeine can be used for RLS. However, this I believe refers to codeine phsophate, not co-codamol. Thye difference is NO paractemol and a higher dose of codeine e.g. 30mg

If sleep is a problem, the guidance also suggests a benzodiazepine.

Note also that UK guidance PLUS other recommendations akways state that the managment of RLS/augmentation should include

a) Iron therapy

b) Avidance of aggravating factors.

I have written about thes in more detail in other posts recently.

For more information about these, see these links

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

mayoclinicproceedings.org/a...

especially the sections on augmentation.

[Frustrated-RLS in reply to Elffindoe]

Thank you! I am pretty well-versed in augmentation and I am reducing very slowly over months. Next step is .5mg to .25. It hasn’t been too bad except for this most recent stage which has made for a horrible few weeks. I have been taking 200mg ferrous sulfate 3x a day for more than 2 months. Very aware of triggers including meds and alcohol and staying away from all.

[Elffindoe in reply to Frustrated-RLS]

Great that the reduction is going well.

Unfortunately as the dose gets lower, withdrawals can get worse.

You may find this difficult to believe, but you're taking too much iron and more importantly, you're taking it too frequently.

Iron is actually difficult to absorb because of a hormone called hepcidin. The more often you take iron the more hepcidin will be released and the LESS iron you will absorb.

Taking iron 3 times a day will probably mean you absorb very little of it. The rest will pass straight through.

Even taking it once daily will still mean you won't absorb so much.

The most effective way to take iron is take it only once in any day and only take it every other day, NOT daily. This can increase absorption by up to 50%

The other thing is that taking more than 60mg at one time also decreases how much you absorb.

It's best then to take a lower dose of iron.

Ferrous bisglycinate (gentle iron) is popular. It causes less problems for the gut and is of sufficient strength.

Take it in the evening one hour before or two hours after eating. Taking orange or vitamin C at the same time can help.

Taking magnesium or an antacid at the same time can prevent absoprtion.

[Frustrated-RLS in reply to Elffindoe]

I would LOVE to take less iron. What I am currently taking is on the direction of my doctor, but I will share this with him. It rings true.

[Elffindoe in reply to Frustrated-RLS]

I wouldn't be too worried about sharing that with your doctor.

You don't have to do what they advise if you don't wish too. If you want to take less iron, then don't take as much.

You don't need a doctor to take an over the counter oral iron supplement like ferrous bisglycicate. It doesn't requre a prescription it's a food supplement, not a medicine.

see this link

pubmed.ncbi.nlm.nih.gov/319...

and this one

practiceupdate.com/content/...

The second (full article) says

"the every-other-day iron dosing had a significantly higher fractional iron absorption rate (increased 40%–50%; P<.001) compared with daily dosing."

and

"This means that taking iron daily or even twice daily may not be useful. The first dose would trigger the hepcidin and block the system, which means that the second dose is not really being absorbed."

and

"even 60 mg of iron would cause this increase in hepcidin and block iron absorption."

[Frustrated-RLS in reply to Elffindoe]

Super helpful…thank you!

[Goodfairy]

Get some good quality B vitamins and vitamin e and niacin.take in larger quantities than recommended.at least double dose.Magnesium too.

You gave nothing to lose by trying.

Drink pkenty of water.avoid alcohol and coffee

[Frustrated-RLS in reply to Goodfairy]

Will try the vitamins! Can’t hurt. Thought magnesium was a no-no if on iron supplements but I will look it up to check.

[Elffindoe in reply to Frustrated-RLS]

Just take the magnesium at a different time i.e. one hour before or two hours after taking anything else. Avoid this 3 hour window.

[Frustrated-RLS in reply to Elffindoe]

I’ll try it. Thank you!

[Tharg]

Sorry, Frustrated, really can't help much on the withdrawal side of the problem. I'm suffering augmentation on ropinirole myself but trying to work round it to avoid the withdrawal. Have been prescribed a replacement dopamine agonist. The doc said switching to it gradually should "minimise" problems but my symptoms for withdrawal can be very bad indeed and I just cannot risk it at the moment.

[Elffindoe in reply to Tharg]

If you're suffering augmentation then switching from one dopamine agonist to another isn't a good option!

ALL dopamine agonists cause augmentation.

Your doc is wrong!

The best way to deal with augmentation is to withdraw from the agonist.

No pressure, but unless you do that, you're going to be stuck with problems indefinitely.

It would be better if your doc helped you get off all agonists.

You can minimise withdrawals in a few ways.

1) have blood tests for iron deficiency and if they are all "normal" then -

A) If ferritin is less than 75 start taking an oral iron supplement

B) If ferritin is between 76 and 100 seek an IV iron infusion

2) make sure you're not taking any medications that are making your RLS worse.

3) If withdrawals are severe ask your doc for an opioid prescription. Some people find codeine or tramadol helps.

Failing that co-codamol.

4) If you're not sleeping due to withdrawals, ask your doc for a benzodiazepine.

5) ask your doc for a replacement for the agonist. You can start this before reducing the agonist. The ones recommended are gabapentin or pregabalin.

6) reduce the dose of the agonist by small amounts and leave at least two weeks between reductions.

For ropinirole don't reduce tbe dose by more than 0.25mg at any time and even less if necessary.

Read these links for more information.

mayoclinicproceedings.org/a...

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

[oldfidgetlegs]

My doctor couldn't be less interested in RLS. I was on Ropinirole for some time until I read here about augmentation and as it wasn't particularly helpful I managed my own programme of withdrawal. I did it extremely slowly, cutting up the tiny pills, but even so it wasn't easy and once or twice I felt overwhelmed by symptoms. However, in the end I was off it completely. Now I take 150mgs Pregabalin plus a couple of Co-dydramol and 2.5mgs Diazepam at night and can get 4 hours sleep sometimes which is quite a breakthrough. I have low ferritin but taking iron, even a small amount, really upsets my tummy so I'm giving it a miss at the moment. Good luck with your situation - this is such a helpful site and it's good to know there are so many others in the same boat and ready to share their experiences.