Back on the Pramipexole: So I couldn't... - Restless Legs Syn...

Restless Legs Syndrome
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Back on the Pramipexole

Heatherlss
Heatherlss

So I couldn't keep up with the withdrawal symptoms or maybe permanent worsening of the RLS. I have been taking Pramipex 0.125mg now. It's almost been a week and touchwood its working. I hadn't augmented previously but now that I'm back on them, the lingering feeling that augmentation will kick in does cross my mind all the time. What advice would you guys give me ?

I haven't found a single doc whose willing to consider me for iron infusion or listening to me since I don't want to be on DAs rather be on something that doesn't worsen the problem in the future. Disappointing since my ferretin was 35 last I checked. Have been taking gentle iron every night for the last two months though so I hope it is getting increased.

16 Replies
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Take the iron every OTHER day Heatherlss. It apparently fools the body into better absorption. Keeping your ferritin up should help and yours is still low. All the best

I use new pro patches now 24hr slow real ease I’m on 2mg and occasionally I get twitches but very rare nowadays

Hi I am sorry to hear about your experience with your RLS I have had RLS for many years back and forth to doctors I have been on different tablets no good climbing the walls and walking around outside night times so bad I was on pramipexel very bad with Agmentation then I saw a new doctor and she sent me to see a neurologist the best thing ever happened to me now I am on pregabalin 75 mg I take one at 6 PM and 1 at 9 pm the best nights sleep I have ever had for a long time all the best for you please let me know how you get on XXX Henshaw 241241

Heather, to increase your serum iron and iron stores (ferritin) is a slow process when you take iron orally. Be patient. And, once a day (on an empty stomach, most of us take at bedtime) is equally good as once every other day; the latter is of course cheaper and less likely to give obstipation.

I am happy for you that the symptoms have subsided again now that you take the pramipexole every night. There is no use worrying about augmentation. You only have to keep in mind NOT to increase your dose when is proves no longer sufficient to quell the RLS as it does now. You may be among the lucky ones who can take it forever; augmentation is not a given. Meanwhile, knowledge increases as sciences ploughs on. And already it is known that having a relatively high ferritin level (well above 100) may help to avoid and/or deal with augmentation.

restlessstoz
restlessstoz
in reply to LotteM

Hi Lotte, can you clarify please? You say that having a higher ferratin may help with not developing augmentation on DAs? I have heard it can help with RL symptoms... which it hasn't for me, and I'm about 16 weeks post infusion and my ferritin was 465 at the last blood test. I'd given it up as a not effective treatment for me but if it can help reduce the risk of augmenting, then that's brilliant news.

it CAN help some people, a lot it doesn't. The only way to deal with augmentation is to reduce the dose of the dopamine agonist, or to change drug classes altogether. Ferritin level CAN help some people, and more often than not, it doesn't. But, it is one of the few things people with RLS can try. AND, never start taking iron unless you have been tested first. Iron overload is a real thing, too. :)

Thanks Nightdancer. Like all things RLS, it's trial and error! It didn't work for me in terms of reducing RL symptoms to have an infusion but at least it was something else to try and focus on for a while. :)

I have been taking pramipexol 3x0.25mgm for 10 years.....no problem with augmentation.

A problem with RLS sufferers is "anticipation", it seems you may be allowing this to occur,

Prevent it by occupation of mind .... distraction, it works. Ferritin levels should be at the top end . Adult males....20 to 250. Adult females....10 to 120, Females over40, 12 to 263.

Iron by mouth will be slow to raise it.

Lapsedrunner
Lapsedrunner
in reply to Kcay

I only got that “anticipation” during augmentation.

restlessstoz
restlessstoz
in reply to Kcay

How can I have been allowing it to occur when I hadn't even heard about it at the time!!! The only thing I knew was my legs were going 24/7 and it was only when I learned about augmentation that I was able to reduce and wean off the pramipexole and stop it happening!!!

EXACTLY. That is the way it happens for 99% of people who do augment. They do not know about it until it happens. :) x

Pippins2
Pippins2
in reply to Kcay

Kcay could you please explain what you mean by anticipation allowing augmentation to occur -I am rather confused by this?

Elisse2
Elisse2
in reply to Kcay

Allowing augmentation to happen.! Really.!! Many people on here AND other RLS groups didnt even KNOW they were augmenting , never heard of it, til they found out thats what was happening to them when they joined a RLS group. I see in a previous post you augmented on Sinemet, so was that because you allowed it to happen. ? Just asking. :)

nightdancer
nightdancer
in reply to Kcay

Augmentation is a physical thing, not a mental thing. In all of my groups, I can assure you many people augment without knowing what it is or ever having heard of it. So, "anticipation" does not fit there. It is a real thing from being on too high of a dose of a dopamine agonist. Not ALL people augment. It is purely dose related. So, if you have been on the same dose for 10 yrs and never upped it, then you are on a good maintained dose for YOU, and you are not in the group of people who would augment. 12-15 is the "normal" ferritin # for people without RLS. Now, they want people to be at least 100. I had 3 iron infusions, years ago, because my # was at 5!. :) After the infusions, 1 week apart, we got it up to 172, and it did not help ME at all. It is hit and miss who is helped by iron and who is not.

I have used it for some time now, 1 yr. I have been relatively good for the last month. However, when they (RLS episodes,) do come, they just about knock me out of the bed. As for the iron, you know more about it than I do. Hope this helps. Good luck.

Hidden
Hidden

You have my sympathy. I was on pramipexole for a few years and kept having to up the dose because of augmentation. Obviously there is an upper limit of how much you can take. I decided to come off it and with guidance from my GP went 'cold turkey'! When I stopped taking it I did suffer withdrawal symptoms and initially my legs got much worse, but it was worth it. I now take a small dose of trazedone at night and an equally small dose of codeine when I need it, which is most nights! Trazedone is usually prescribed for depression and anxiety, but it also helps with restless legs which is why I take it. It also aids sleep. I find rubbing lavender oil into my legs at night helps.

Hope this helps and good luck.

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