Finally, off DA but perhaps not for much longer

[MrVimes]

I am 64 years old and after 22 years of taking the DA Mirapexin, I took my last quarter tablet on July 7th. However, after three weeks of sleepless nights, I may have to start taking them again, which is a depressing prospect.

All my bloods (e.g. iron panel, B12, etc) are fine. I started taking pregabalin four years ago to help me come off Mirapexin, which had augmented. I am now taking 575 mg (so 125 mg above the 450 mg maximum prescribed). I take this at about 7 pm. Since May this year, I started taking 5 mg of MST Continus, which is a prolonged-release morphine sulphate medication, when I go to bed. I have increased this to 10 mg.

On the positive side, I am lucky not to suffer at all during the day or evening. It is only when I go to bed. Generally, I quickly fall asleep but am woken by RLS about two hours later. The rest of the night is then awful with no prospect of sleep.

I have read on this forum that it takes some weeks after stopping DAs for pregabalin to work to its fullest. I plan on giving it at least another week (making it four), but at some stage, for the sake of my sanity, I may have to relent and go back to a concoction of DA, Alpha2-Delta Ligands, and opioids, as this works in terms of suppressing RLS symptoms.

Any advice would be very welcome. Thank you.

[SueJohnson]

The usual effective dose of morphine is 15 to 45 mg according to the Mayo Algorithm. I would increase this. Don't go back on the DA. You will augment quickly. Give the pregabalin a few weeks. If it doesn't work your dopamine receptors may have been damaged by taking the DA for many years , so then slowly come off it by 25 mg every 2 weeks to avoid withdrawal symptoms.

[MrVimes in reply to SueJohnson]

Thank you, Sue. Excellent advice. I will seek an increase in my morphine prescription from my doctor and slowly reduce my pregabalin consumption.

[SueJohnson in reply to MrVimes]

Do give the pregabalin a few weeks first. It doesn't work well until your withdrawal symptoms from Mirapexin settle.

[MrVimes in reply to SueJohnson]

Thank you, yes I will do so.

[Madlegs1]

If you have opioids in your armoury, why not just add that into the mix?

On no account go back to DAs-- unless you are a complete masochist.

Good luck.

[MrVimes in reply to Madlegs1]

Thank you Madlegs1. I am going to try and get my opioid prescription increase and will not go back to DAs.

[707twitcher]

I'd suggest switching to one of the longer life, most recommended opioids for RLS - buprenorphone or methadone. With opioids, you can generally switch between them without worrying about withdrawal or tapering, so long as the new one is similar in strength, or higher, than the old. Buprenorphine and methadone are typically considered much less likely to lead to abuse than other opioids, so I would think your doctor should be receptive to switching. The buprenorphine pills or strips with Naloxone are formulated specifically to make abuse nearly impossible.

Given the length of time you were on Mirapex and how long your tapering downl period lasted, I highly doubt that your dopamine receptors will recover any time soon, if ever, in order for pregabalin to work effectively.

[MrVimes in reply to 707twitcher]

Thank you 707twitcher. Excellent advice. I also believe my dopamine receptors have been damaged. I wonder whether you or anyone else on this forum understands exactly what that means; it is a phrase I have often read. I will discuss a different opioid with my doctor per your recommendation.

[SueJohnson in reply to MrVimes]

it means that the nerve cell receptors responsible for picking up and transmitting dopamine signals are compromised.

[MrVimes in reply to SueJohnson]

Thank you. Do you know how that affects the individual with the compromised transmitters and what they can do to overcome the problem?

[SueJohnson in reply to MrVimes]

It affects the individual in the sense that medicines like gabapentin and pregabalin won't work. Damaged dopamine receptors can lead to lack of motivation, fatigue, and mood changes. You might feel anxious, moody, or even depressed. Pleasure from previously enjoyable experiences may diminish. It can affect cognitive abilities: problems with short-term memory, daily tasks, and solving simple problems. However these are more extreme cases and also are symptoms of low dopamine.

They can be permanently damaged in the sense that they never recover or they might recover after many years. There is nothing the individual can do and it usually means they then need low dose opioids to control their RLS. The only thing they can do is avoid it happening in the first place is by never taking DAs.

[MrVimes in reply to SueJohnson]

Thank you. That is a very clear answer and will help a lot when I next speak with my doctor.

[Marzipana]

I was weaned off Ropinerole by last year, but my RLS symptoms were way worse at night. Pregabalin didn't seem to help. Then came Clonazepam, double Clonazepam, then Tramadol (none helped). Now my doctor wants me to try Vicodin. I broke my wrist in May and got Vicodin for pain, but it didn't help RLS. For 7 months, I've taken .5mg Ropinerole once a week , just to get a decent 6 hours of sleep. I'm going to try to split that to .25 mg 2× week to see if it works. I hate being on any Ropinerole, but I'm desperate for sleep.

[707twitcher in reply to Marzipana]

I assume your doctor won't prescribe buprenorphine or methadone? Tramadol is an opioid that many people say has provided RLS relief, at least for a while. But when I tried it briefly, it didn't touch my RLS. Buprenorphine has worked great for me.

[Marzipana in reply to 707twitcher]

My doctor prescribed tramadol, but it did nothing. Finally she prescribed Buprenorphine, but it was .7mg, which made me so sick i had to go to ER to get an IV with anti nausea drugs. I've learned that in the UK, Buprenorphine is usually started at .2mg. Perhaps I wouldn't have gotten so sick on the. 2mg dose. Now the doctor wants me to try Hydrocodone. I'm very discouraged!

[MrVimes in reply to Marzipana]

I am assuming you are in the UK and so my comments below may help. My doctor prescribed MST Continus, which is a prolonged-release morphine sulphate medication, to help me get off Mirapexin. Since I had been trying to get off it for four years using just Pregabalin, I can say that it did help. Unfortunately, she has only prescribed 5mg, which is just not enough. Sue Johnson correctly highlighted that, according to the Mayo Clinic Algorithm, the right prescription of morphine is much higher. I have checked and, on page 1931, it recommends between 10-15 mg as the starting dose and a usual effective total daily dose of 15 to 45 mg. My challenge now is to a) get an appointment, b) convince her to increase my prescription and c) stay sane while trying to achieve a) and b) while getting almost zero sleep.

[Marzipana in reply to MrVimes]

It's sad and frustrating that our doctors, who should be our advocates, guiding us through rough times toward the best possible outcome, are often our biggest obstacles! I live in the US, and it seems that we all have similar problems getting help from our physicians in a reasonably timely manner, not to mention simply getting the right medications/doses. Yesterday, a phone conversation I had with a person, possibly a nurse, at my Neurologist's office, was reminiscent of a conversation I just had last week with my six year old Grandson (who has some speech issues), about a game he has on his tablet, of which I have no clue about! It was a meaningless, frustrating conversation in both cases!

[SueJohnson in reply to Marzipana]

If you tell me what city and state you live in I might be able to give you the name of a knowledgeable doctor.

[Marzipana in reply to SueJohnson]

Hi Sue, I live in Eau Claire, Wisconsin.Any suggestions would be helpful!

[SueJohnson in reply to Marzipana]

You are lucky. You aren't too far from the Quality Care Center in Rochester Minnesota which is only 1 of 12 in the US and people have traveled thousands of miles to go there. They can't prescribe medicine for you since you are out of state but can recommend it to your local doctor. They would probably only need to see you in person once and then could do telehealth appointments.

200 1st Street SW Rochester, MN Phone: [phone]. You want one of these doctors: Michael H. Silber, MB, ChB (QCC Director) - the best. Suresh Kotagal, MD, Mithri Junna, MD, Melissa C. Lipford, MD, Erik K. St. Louis, MD, Maja Tippmann-Peikert, MD

mayoclinic.org/departments-...

[Marzipana in reply to SueJohnson]

Thank you Sue. I'm a bit confused about "Quality Care Center", as I think it is the Mayo Clinic in Rochester. When I googled Quality care Center, it was described as care for people with disabilities. I was actually with the Mayo Health Care System for 10 years, and have been to Rochester several times, seeking help with RLS. I saw a neurologist, who passed me off to sleep medicine. Dr. Melissa Lipford was my sleep specialist until this past January, when I switched health systems to keep my monthly insurance premiums down. While Dr. Lipford did help me to wean off Ropinerole and Gabapentin, the only drug introduced was pregabalin, which, after months,, I told her was not helping me. She did not want to try me on anything else! I will switch back to Mayo Clinic (from my current Marshfield Clinic, which has been very disappointing for neurological care) at the beginning of 2025. I will be 65 (the age for Medicare) in October. I will try to contact Dr. Michael Silber. At this point, I'm willing to go out of network! My first night taking Hydrocodone only ended with my having a headache this morning. It did not help the RLS! That was the brainchild of my Neurologist who has every other week off!!

[SueJohnson in reply to Marzipana]

I am surprised Dr Lipford did not suggest anything else. It is designated as a Quality Care Center by the Restless Legs Foundation which you should join at rls,org. It costs $40 a year and has a monthly magazine and many publications available on its site. It is well worth the money.

Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

You take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If you have headaches they tend to disappear or lessen after around 5 days.

[Marzipana in reply to SueJohnson]

Thank you for clarifying what the Quality Care Center is. I will sign up to join, and after I finish this text, I will contact my doctor via my portal about Dipyridamole. That sounds promising! Your help is much appreciated.

[MrVimes in reply to Marzipana]

Thank you for your comments, Marzipana. The temptation to take infrequent doses of Mirapexin is huge for me too and I am not sure that I have the will power not to. I also hope I am able to get an appointment with my doctor, which is a hugely stressfull process in itself, and then that she agrees to increase my morphone prescription.

[Marzipana in reply to MrVimes]

When I'm walking (haha, more accurately "trudging") the floors throughout the night, I offer my discouragement/weariness in prayer for everyone else with RLS, that they will have some peace of mind and heart, even if the legs are not at that point yet!

[Hidden in reply to Marzipana]

Marzipana, did you ever try going up to 100mg of Tramadol rather than just 50mg? Jerry57 has had decades of relief from 150mg of tramadol and iron at night.

[Marzipana in reply to Hidden]

Thank you DesertOasis. I will certainly bring this up to my new doctor on Tuesday. I'm always,impressed with the wealth of information I receive from HealthUnlocked!

[Marzipana]

I meant the above post for you, Mr. Vimes.

[Rushgram]

This is frightening to hear. I am just behind you in the process. Down to 0.125 mg of Mirapex. Taking Gabapentin. Sue and other contributors got me through the day today. I appreciate it so much. Just settled into bed and my legs are still at the moment. I hope you get some relief. I agree with the others about not going back to Mirapex- there has to be a better solution. Like you I have been on it for a long time ( around 30 years) - so I am probably facing a similar journey. Good luck to you

[MrVimes in reply to Rushgram]

Thank you Rushgram. Good luck to you too. If you have not tried taking some form of opioid, you may want to ask your doctor to consider it. Page 1931 of the Mayo Clinic Algorithm provides the recommended doses.

[Bernaldi]

I don't know if you've read about my ongoing successful experiment with l tyrosine. However, I never took a drug like that and so never augmented. And I have known dietary triggers (lectins, which are in a LOT of foods but for me I'd rather avoid nightshades, grains, and legumes than struggle with RLS) which I scrupulously avoid.

I am still sleeping well by putting L tyrosine powder in my water than I drink every day; I measure my water so that I'm sure to drink enough and use the 1oz per 2 pounds / 1kg of body weight rule. I'm putting tyrosine powder in the water along with the other stuff that I put in it, and since I started that just two or three weeks ago, I am not having RLS problems other than the occasional leg jerk.

For comparison, when I was in a sprouted corn tortilla kick with scrambled eggs for breakfast, half my body would jump off the bed every 30 seconds all night long no matter what I did. The combo of getting back on my diet, which helped but did not suffice, plus the tyrosine powder throughout the day, has me sleeping very well for now. As we all know, this may not last, but I am thankful to go to sleep fairly easily and not wake up until it is light out. Taking no drugs.

[MrVimes in reply to Bernaldi]

Thank you, Bernaldi for your comments. I know diet is important for controlling symptoms. I might buy some L-Tyrosine and see if it helps me.