How to I convince a doctor about DA augmentation and the correct algorithm to treat RLS?

[MrCrow]

I want to try and get the best treatment available in India. While opioids are a long shot, Gabapentinoids and iron therapy is available here. But doctors still insist on DAs as first line.

In my next visit I wish to have a discussion and present my side with relevant evidence that shall convince them.

I am aware that there is a lot of literature available on the internet but it would be very helpful if someone could point me to a list of specific and authoritative things that I can show to the doctor during my next appointment and have things clarified.

Additionally, I would also like to convince my loved ones about the whole situation who think I'm either crazy or a know it all who claims to know medicine better than the experts. They're of the opinion that you gotta just trust the system and it's all gonna be fine.

[SueJohnson]

Https://mayoclinicproceedings.org/a...

jcsm.aasm.org/doi/pdf/10.56...

relacshealth.com/blog

rls-uk.org/

[MrCrow in reply to SueJohnson]

Right in the first link itself, there is mention of Dopamine agonist as one of the treatments. Even for refractory cases, they suggest using DAs in combination with other drugs like alpha 2 delta and benzos. Kinda defeats my point about insisting against DA use. What I could do is to then just say that the DA doesn't do shit. Which it actually does really. I've tried pram at 0.25 and it didn't do anything for my symptoms.

I think what would really help is if we show evidence that DAs inevitably lead to Augmentation. Something like studies on the rates of augmentation would be really helpful.

[SueJohnson in reply to MrCrow]

But it emphasizes it is second line treatment only if gabapentin and pregabalin haven't worked and it also talks about their potential for augmentation and impulse control disorders.

Unfortunately DAs do not always lead to augmentation.

[MrCrow in reply to SueJohnson]

Why is that unfortunate? If it doesn't lead to augmentation for some patients good for them ig.

But then how would you know if you're augmenting unless you've tried the damn thing and had things worsen for you permanently.

[SueJohnson in reply to MrCrow]

I meant that it was unfortunate that you couldn't "show evidence that DAs inevitably lead to Augmentation."

[MrCrow in reply to SueJohnson]

Makes sense

[MrCrow in reply to SueJohnson]

By the way, Can you switch between Gab and DAs? Like take gab for several years till tolerance develops or there is loss of efficacy. Then switch over to DA for some time from Gab lets says for less than a year so that you don't risk augmentation. Then switch back to gab hoping that some of the sensitivity would have come back. Is this a possibility? Or is it that once you've developed tolerance to a drug, you've developed tolerance to it for good?

[SueJohnson in reply to MrCrow]

You don't develop a tolerance to gabapentin. It is common in the first year to have to increase it. After that it can be a number of years until you have to make a small increase. Since according to the Mayo Algorithm most RLS patients require 1200 to 1800 mg of gabapentin and the maximum is 3000 mg and a normal increase might be 100 mg, unless the person started gabapentin say at age 20, they are unlikely to reach that.

If one has ever augmented switching back will quickly lead to augmentation again. And augmentation can occur even before a year is up although this is unlikely if one has never augmented.

[SueJohnson in reply to MrCrow]

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

academic.oup.com/sleep/arti... carbidopa/levodopa acts in the same way as dopamine agonists - this one show 73% develop augmentation.

[Madlegs1 in reply to SueJohnson]

That's pretty conclusive.

As long as they continue past the first paragraph.

The film "Slum Dog Millionaire" comes to mind.😝

[Merny5 in reply to Madlegs1]

🤣🤣🤣

[ziggypiggy]

Regarding your loved ones. If they truly care about you, suggest one of them create an account here and post there concerns and questions to the group. I have thought about that myself at times as I often get the eye roll when I explain to them that opiods are the only thing that bring me relief.It can be really be demoralizing and hurts even more when it comes from the ones you hope will trust and believe in what you say.

[SueJohnson in reply to ziggypiggy]

Great idea

[Cluaran in reply to ziggypiggy]

I'm lucky. When my RLS is really bad and I'm exhausted because of no sleep, my husband tells me it's time to take tramadol. He can't understand why I wait so long. I'm terrified of getting addicted to it. It's the one medication that stops my RLS and for a few hours I can sleep, wake up refreshed and relax in my chair with my knitting.

[GoForward]

I have only recently been able to convince a doctor (private GP) here in Canada of the severity of my spasms and my need to introduce an opioid. I am in the process of weaning off Pramipexole. On her advice, I was taking only Pregabalin (100 mg at that time) and was experiencing uncontrollable spasms. My approach was to take several separate “clothed” videos of myself during a given night. The evidence was clear and time-stamped. She understood immediately. Hope this approach might help you to make your case too. Very best of luck!

[MrCrow in reply to GoForward]

100mg! Did I read that right? Is that even possible? Do you mean 1mg?

I don't think I ever want to be on pram. It leads to permanent damage for most patients. Maybe the best thing to do with pram is to try it at the lowest dose. Go up maybe one dose at max and then immediately taper off in case there are signs of augmentation.

[GoForward in reply to MrCrow]

No. It was “Pregabalin” I was on at 100mg. The Pregabalin was prescribed at the beginning of my reduction of Pramipexole. The maximum daily dosage of Pramipexole I was ever on was 1.75 mg. I have been able to reduce that to .375 mg so far. But during the reduction process my RLS went through the roof. Thus the need for an opioid. I am currently taking Suboxone. The sublingual film format. Here in Canada the minimum dosage available is 2 mg. I cut the film into quarters.

[Clamire in reply to GoForward]

Goforward, I see Violeta already mentioned this to you but it bears repeating - you should try taking ferrous bisglycinate on an empty stomach before bed. See below: healthunlocked.com/rlsuk/po...

[GoForward in reply to Clamire]

Yes, Clamire. I have tried it at bedtime on an empty stomach. Unfortunately, I find any form of iron (liquid as well) gives me terrible esophageal pain within a few hours of taking it. I can get away with it during the day after eating but I know that weakens absorption. Appreciate the reminder though!

[Clamire in reply to GoForward]

You can try iron patches by PatchMd. I love them. They are a lifesaver when you eat dinner late ie 9pm 🙄. The patches have been around quite awhile but sadly they now only make them in 15mg whereas years ago I believe they went as high as 90mg. You have to put them on much earlier in the evening than you take oral iron because they are timed release over 8 hours. So apply them at least three hours before bed. I use 4 at a time. I used to put them on my wrists. Now I put them across my forehead. When my husband sees me with the patches across my forehead he just shakes his head. Then I ask him if he wants to sleep on the couch for a month. I use them more often than I care to admit. I’m always telling people to eat dinner by 7pm yet here I am not taking my own advice.

[GoForward in reply to Clamire]

I am laughing at the visual of your forehead. But thank you, Clamire, I had never heard of being able to take iron this way! And I have checked and can purchase them through Amazon here in Canada. Great idea! Although I’d better warn my husband. LoL.

[RiceyRiceRice in reply to MrCrow]

Even that is dangerous. For one thing, something like impulse control disorder can still happen to you. On the other hand, other treatment options are sometimes less effective. Even if no augmentation has yet taken place. Dr. Diego García-Borreguero once said something about this in a video.

Dopamin agonists should really be the absolute exception and only in cases where the patient needs rapid relief of symptoms and is already at the end of his life.

[GoForward]

Based on my experience with Pramipexole and augmentation, I would not recommend it to anyone, knowing what I know today…thanks to the wonderful contributors on this site.

[teakabeagle]

look up articles by Dr. John Winkleman. He wrote a lot about DA’s and methods to avoid augmentation, but then realized he was wrong about them and recommended against using them. I saw a lecture he gave to sleep medicine residents where he discussed it also.