Augmentation

[wantokporo]

I am sure this is addressed somewhere but I am too tired to look for it. In my years with PLMD, I have taken almost everything, but not dopamine agonists. Is it correct that if you start and have success at a low dose -- and never increase it -- that you could avoid augmentation?

[SueJohnson]

No that is not true. It doesn't matter how low a dose you take, you can still develop augmentation which believe me you don't want.

[coldfeet7 in reply to SueJohnson]

Amen. You DO NOT want it. If you start and it works for a while and then doesn't and you increase the dose (as most do), that is when you start climbing the ladder to augmentation (which can be hell on earth).

I augmented within 3 months at a low dose. I didn't know what RLS REALLY WAS until I suffered augmentation. It started virtually overnight and ramped up full bore quickly. So it is possible to get there at a low dose (I never had a decade's relief that some get). I suspect I was able to get out of it fairly quickly (a few days substitution with gabapentin) because I wasn't on the DA very long.

[SueJohnson in reply to coldfeet7]

I think you meant this for wantokporo.

[coldfeet7 in reply to SueJohnson]

Oops... should I move it up a level to their post or will they see it under yours?

[SueJohnson in reply to coldfeet7]

She might see it, but I would move it.

[Madlegs1]

It's very much a personal issue.

Some people may get 10 or more years on a DA by keeping to low doses and taking drug holidays or even combining with a low dose alpha ligand 2 such as Gabapentin.

However, you also need to address issues of iron and triggers, to eliminate those as causes of your RLS.

Good luck.

[kylieah]

I believe that is false. I’ve been on it for about 10 years. They don’t work anymore. My doctor isn’t very helpful and just tells me to have a break from it which doesn’t help me either. I’m sick of it

[SueJohnson in reply to kylieah]

So you are suffering from augmentation and need to come off it. I'm assuming you are on pramipexole since you list that on your profile. It is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. To come off it, reduce by .088 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin) daily." If you take magnesium take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin). Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal.

[SueJohnson in reply to kylieah]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[wantokporo]

I saw it. Thanks all for your input. I know my gabapentin dose is low and I can increase it. I have tried it several times previously and went off of it because of side effects so keeping the dose as low as possible is a goal. 100 mg pregabalin -- what I have been taking -- should convert to 600 mg gabapentin, but, as I said, after 8 days was not covering my PLMD. I'm moving up by 100 mg of gabapentin slowly to see what is the lowest dose that might work without the side effects pregabalin and/or gabapentin have caused previously. Or not...I have heard that whatever side effects one experienced in the past may not be exactly duplicated. Dr. B., in fact, now that I remember, suggested I try gabapentin for the second time way back a long time ago. (By the way, one thing he failed to tell me or help me with, was the depression the gabapentin was causing was the result of adjustment and it quickly went away. It was only because I was trying to slowly build up the amount I was taking and four days was not enough to adjust and we figured I was just doomed to be depressed and couldn't take gabapentin for that reason which wasn't true. There were, though, other side effects that didn't go away. The depression did.)

[Amrob]

Taking a very low dose of dopamine agonist may mean that you avoid or delay augmentation. While augmentation is likely, it's not inevitable.

My experience of augmentation and subsequent withdrawal from a dopamine agonist wasn't awful like that of many members on here.

My concerns would be around the long-term and potentially irreversible effects of dopamine agonists on dopamine receptors.