Mayo dopamine agonists withdrawal procedure

[rls-ottawa]

Hi everyone, any comment on below?

"Discontinuation of dopamine agonists because of severe augmentation or other adverse effects and substitution of a drug of a different class (such as an alpha2-delta ligand) can be achieved in 2 ways.

The initial drug can be reduced slowly after the new agent is introduced with an overlap period when the patient is taking both medications. Alternatively, the initial drug can be reduced and discontinued with a drug holiday before the new agent is introduced. Higher doses of dopamine agonists should never be discontinued abruptly as serious withdrawal effects can occur, characterized by severe RLS, sleep disturbance, and depression. Rates of reduction should not exceed 0.25 mg (pramipexole) or 0.5 mg (ropinirole) every 3 days.

Whereas a drug holiday can allow a new symptom baseline to be established, many patients with augmentation from dopamine agonists find it difficult to tolerate a period free of any medication, with exacerbation of RLS and profound insomnia lasting sometimes a week or longer after complete discontinuation."

Any comments?

Thank you All

[SueJohnson]

All true except for the every 3 days which is too fast. The usual recommendation is every 2 weeks and that one should let the increased symptoms settle before decreasing again and that it may be necessary to decrease by a smaller amount or over a longer period of time and that near the end a low dose opioid may need to be temporarily needed.

[Biscuitface]

My gp stopped all my meds, abruptly including a very high dose of Pramiprexole. I was told I had to wait 2 weeks before he could start any other med. It has taken me 2 years to recover from that

[Hidden in reply to Biscuitface]

So sorry your doctor put you through that it’s not advisable to just stop dopamine meds especially a high dose and leave you with no replacement med. I have read of people ending up in hospital hallucinating from going down the cold turkey route. Hope you are ok now.

[Biscuitface]

I'm a lot better now, thankyou Elisse2

[MrVimes]

After 22 years on Mirapexin, I had reached the maximum dose of 5 x 0.088 mg tablets per day, and augmentation had set in. My GP prescribed Pregabalin. I asked for a mix of 25 mg, 50 mg and 100 mg tablets so that I could tune my dose to the optimum amount without exceeding 450 mg daily. She trusted me to work out my transition from Mirapexin to Pregabalin. Initially, I tried reducing my Mirapexin dose relatively quickly (one tablet every 3 - 4 weeks). It did not work, and I suffered very severely. That was nearly two years ago, and I am still transitioning between medications. I am pleased to say that I have been on just 2 x 0.088 mg Mirapexin for about three weeks and 350 mg Pregabalin and my symptoms are very much under control. My next step is not to reduce my Mirapexin by half a tablet but to reduce the Pregabalin by 25 mg. If that works, then I shall reduce the Pregabalin further. Once I have achieved the optimum dose of Pregabalin, I will try reducing my Mirapexin amount to 1.5 tablets. In conclusion, in my experience, switching away from dopamine has taken years, not months, weeks and certainly not days.

[HipHop1972]

Hi RLS- Ottawa. I am suffering augmentation having been on dopamine agnostics for about 20 years from when I was initially diagnosed with RLS which I’ve had for the past 40+ years. I’ve been withdrawing from Ropinirole (6mg) a day since 23 October 2022 and am now on 2mg per day and it’s the hardest thing I’ve ever had to do. I very occasionally take Kratom Red Vein as a drink but only when life becomes intolerable through lack of sleep, I don’t take any other medication alongside Ropinirole at the moment but am going to have to see my GP about it before I become a total wreck. The forum has drawn attention to Buprenophine ( especially vocal on the subject is Julsg) who is at the forefront of trying to change attitudes of the medical profession on treatments for RLS and the terrible consequences of Doctors and Specialists mistreatment of RLS. We all need to lobby at every opportunity.

Having looked up Alpha2 - delta ligand which says that it includes the following drugs, Gabapentin enacribil, Lyrica Pregabalin and Gracie’s and Neurontin (Gabapentin) it states that people with Cronic Lung Desease (COPD) and the elderly should be especially careful due to the risk of breathing problems, this is of concern as I fall into both categories and the aforementioned drugs appear to be the ones prescribed post Ropinirole withdrawal and as my GP said he wouldn’t prescribe Opioids then I’m feeling a bit out on a limb, but will ask the question again.

Hiphop1972

[Joolsg in reply to HipHop1972]

ncbi.nlm.nih.gov/pmc/articl...

I'm searching articles for you HipHop.

Buprenorphine at low dose ( under 1mg) for RLS may NOT aggravate your COPD.

I'll search for more scholarly articles & you can show them to your doctors.

Clearly, you will have to tread very carefully and be closely monitored.

[Joolsg in reply to HipHop1972]

sciencedirect.com/science/a...

This article states Buprenorphine has a lower risk of respiratory depression than other opioids.

In your case, you may find raising serum ferritin above 100/200 may substantially reduce your RLS. An iron infusion is the fastest way to achieve this and if you're in the 60% that experience dramatic improvement, you might be able to be free of meds.

Follow up that route as you get nearer to 1mg/0.5mg.

[HipHop1972 in reply to Joolsg]

Hello Joolsg. Thank you so much for the information it’s a great help and will certainly follow up on it. I must admit I was a bit concerned when I read up about Alpha-2-Delto Calcium and COPD, rock and a hard place came to mind. The help and advice you provide on the forum is amazing especially considering all the work you do in the background to draw the attention of the medical profession to the desperate need for greater awareness of the disease and more long term research.

Take care Joolsg

Hiphop1972

[HipHop1972 in reply to Joolsg]

Hello Joolsg. In desperation I sent an on line appointment request to my surgery this morning stating that I’m not currently suicidal but coming to the end of my tether with RLS as have never felt so unwell and received an appointment within 45 minutes. Very nice and sympathetic Doctor not seen before who is requesting an appointment with Professor Silvedale who by all accounts I saw many years ago hE is a Neurologist specialising mainly in Parkinson’s Decease but other neurological ailments. I hope it comes through soon before I go crazy as I’m now rather desperate and got no where with Professor Walker.

[Joolsg in reply to HipHop1972]

Oh that's so upsetting. What dose of Ropinirole are you down to now?Did you get full panel fasting blood tests to find serum ferritin? An iron infusion might make an enormous difference.

I am so sorry Prof. Walker hasn't got back to you. I have been trying to contact him about running trials but his secretary doesn't reply. How frustrating.

Professor Silverdale, as a Parkinson's neurologist, may want to keep you on Dopamine Agonists and switch you to the patch.

I would be wary of this because the increase in severity of RLS you experienced on Ropinirole would happen again quite quickly on the rotigitone patch.

But do ask about iron infusions & Buprenorphine as it has the lower risk of causing respiratory depression.

Getting from 1mg to zero very nearly finished me off, so I totally understand what you're going through.

[HipHop1972 in reply to Joolsg]

Hello Joolsg. I’ve been taking 2mg Ropinirole for 2 weeks now but not improving. I won’t agree to the patch as used it previously and augmented although I didn’t know it at the time and the switch was made to Ropinirole, I think by Professor Silverdale. Thank you for your support and I did mention iron infusion to the doctor this morning but reading between the lines I don’t think he understands the effects of augmentation or even what it means. I did mention iron infusion’s this morning and that I’d had blood tests last week but that was to do with the acute pains in my legs general weakness and balance issues. It’s just one thing after another

[Joolsg in reply to HipHop1972]

That could all be withdrawal symptoms from Ropinirole.I think a low dose Buprenorphine may be your best option.

I just wish they would screen us all for iron before giving us drugs. It seems to work better on drug naive patients.

There is a theory that dopamine agonists permanently damage our dopamine receptors which then means they don't work with iron in the brain and also we don't respond as well to pregabalin and gabapentin.

Hopefully, Prof Silverdale will have read the Mayo Algorithm and be more up to date than other Parkinson's neurologists.

Interesting article by Dr. Winkelman attached. Also a useful teaching template from the largest GP training company in the UK. They recognise the dangers of Ropinirole, Pramipexole and the patch.

nbmedical.com/kiss/kiss-res...

sleepreviewmag.com/sleep-tr...

[4inthemorning]

I did .5 mg reduction every day in three day blocks to get off Ropinirole starting from 3 mg per day in evening. It took me two taper attempts as the first attempt toward the very end, locked up my lower, right leg and ankle with excruciating pain.

After the successful second attempt I then did the drug holiday for a week and a half with no drugs, and that was equally difficult if not more so. But there was a reward as my symptoms did reduce considerably and I got to a discernible baseline.

I then started oxycodone at .5 mg for five days and then 10 mg for another five days that worked well at 10mg for a few days and now we are working on the right titrate. Interestingly I’m back down to 10 mg but symptoms start up when I am at about five hours of sleep. Still have further titrating to figure out.

Regarding the comment about having a profound lack of sleep through the drug holiday, At that point I already had profound lack of sleep from the previous two weeks during the taper but I was able to function to some degree as I had to work part time through that period. It’s interesting how you can make it work on very little sleep.

Its a difficult process but I can see now that being off the ropinirole, getting to a baseline, and then, starting a new drug regimen with the opioids seems to be the right path. But it’s early in the new treatment regimen but my doctor is telling me this should end up working really well.

Last note here, I can clearly see now just how bad ropinirole was for me as I had normalized significant augmentation throughout my body.

Hope this helps.