RLS Mistake

[Ikeeptrying]

I really messed up, maybe this will help someone else. Had legs mainly under control with clonapin, lyrica & trazadone. I felt like I was augmenting on clonapin. Had some leftover Requip which I thought would help since it's been months since I augmented on it. Well, now my rls is coming on 2 hours earlier and I can't get anything to stop it except Norco, which I don't want to take every night. Lesson learned--don't go back to a med once you've augmented on it. Has anyone else done this and had it work out?

[Hidden]

Bad mistake to make, going back on your dopamine med once you have augmented or to try any other dopamine med, just to forward that info to you. The only meds you augment on are all the dopamine meds and rarely Tramadol. How long since you went back on the Requip. ? You know you will have to wean back off it again. It can take at least a year if not longer before trying a dopamine med again, and best to not take the one you augmented on. AND keeping the dose very low, and to take another low dose of a different class of med with it. It is possible to do it that way, Altho most people who have experienced augmentation say they will never ever take another dopamine med.

[Ikeeptrying in reply to Hidden]

It has been a year since I augmented on requip. This time I only took the requip 2 nights, last one night before last. I'm not weaning myself off it, just stopped since I only took it 2 nights. Amazing how much damage those 2 nights could do.And my neuro hinted that it would be all right. Should have trusted my own instincts. Wish I could take something that would help me now besides Norco. Thank you for responding Elisse.

[Hidden in reply to Ikeeptrying]

Only two nights,! wow, i know augmentation can happen quickly again, but still. that WAS fast. I am asking the same as Lotte, maybe it was something you took, that could have made your RLS worse. So, you were off it a year, before re-trying. As you can see some have been successful in trying again, and keeping the dose low and taking another class of med with it. I hope you find what will work for you.

[Hidden in reply to Hidden]

Lyrica also occasionally causes augmentation. I'm sure it did for me and it is also mentioned in some 'official' reports I understand.

[Ikeeptrying in reply to Hidden]

I've stopped the lyrica. It caused dark red/purple spots on my arms, at least I think it was the lyrica. It's mentioned in the side effects anyway. Went back to gaba. My arms look like they belong on a Cheeta. Really embarrassing. I don't know if the lyrica caused the augmentation or not. Haven't been taking it that long. I'm assuming it didn't. Thanks for your post.

[involuntarydancer]

I reintroduced pramipexole last Feb after a traumatic withdrawal in Summer 2016. I added it in to an existing regime of lyrica, dipyridamole and Kratom. I only take 0.044mg and I only take it 5 nights out of every 7. I will never increase the dose and will eliminate it at the first sign of tolerance or augmentation. As it is half of the smallest possible pill, I won’t need to titrate down.

My understanding is that keeping the dose very low and having a higher serum ferritin will help defer augmentation.

I certainly hope so as this is the best regime I have had so far.

[Ikeeptrying in reply to involuntarydancer]

Thank you for your post. I just emailed my neuro asking if I could try the dipyridamole. What dose of kratom and lyrica do you take? Maybe this will work out. We'll see what he says.

[LotteM in reply to Ikeeptrying]

Make sure you discuss with your neuro or gp also the potential dangers of dipyridamole: internal bleeding, which can lead to irreparable damage. For that reason my gp advised strongly against it. But then, I am still far from desperate to embark on an indeep discussion with her about its pros and cons.

[involuntarydancer in reply to Ikeeptrying]

I am currently reducing the dose of lyrica - am down from 100 to 75 mg daily but notice some symptoms slipping in at that dose. Usually I only need Kratom on the nights I don’t take pramipexole. I need 2 doses of 3.5grams and sometimes a third dose of about 2 grams.

There is a webinar presentation occurring today on the role of adenosine by the man who carried out the dipyridamole study on the US RLS foundation. These webinars are available to members of the foundation - they are posted on the site after they occur. Joining costs $35.

[LotteM in reply to involuntarydancer]

Interesting! If you’re going to listen, would you mind giving us a summary of the main things of that webinar? Especially those aspects that are NOT mentioned in the paper he and colleagues wrote.

[involuntarydancer in reply to LotteM]

Will do Lotte. I missed it yesterday but am planing to listen to it today. I doubt it will add much to such a dense paper.

[LotteM in reply to involuntarydancer]

While waiting for a telephone consult with my neurologist I had since a long time a look into the rls literature. Found something interesting. On iron. No direct implications for treatment, but still. Shall try to write a post.

[knoXj in reply to involuntarydancer]

What does that mean? >>"having a higher serum ferritin will help defer augmentation"

I found my RLS eventually stopped as I reduced my serum iron and ferritin to optimal levels...NOT within the wide lab range. (Lab range is too high!)

[involuntarydancer in reply to knoXj]

There are people with rls who suffer from too high iron levels and who have to focus on reducing their iron. However, most sufferers have very low iron and a feature of the condition (for the majority) is that iron spontaneously depletes even when they manage to raise their serum ferritin. For a majority of sufferers raising serum ferritin helps with symptoms. If you look at the webinars of Dr Earley on Johns Hopkins website he explains it better than I can. Suffice to say that current experts recommend getting serum ferritin to over 100 and they will give infusions to get levels to over 300. These infusions typically result in greatly improved symptoms.

[LotteM]

Oh my, that was quick - two nights! It may seem that even after a year off the Requip your body hadn’t forgotten about it. Were you on a high dose and for a long time before?

Like you, I also went back to ropinirole (Requip) after a year. The starting dose of 0,25mg. A year ago I had slowly worked up to only 0,75 mg in about 4 months, didn’t increase further and stayed on it altogether for some 10 months. The current dose works, maybe not 100%, but well over 90%. See my reply to another post of earlier today for other details. I take it 3 nights and then I take oxycodon/naloxon (Targinact) the other 4 nights of the week. So far so good; it’s been about 6 weeks now.

Just one ‘nasty’ question: not something else that may have triggered the RLS and its earlier onset those 2 days? Anyway, I hope you RLS behaves and immediately retreats to its standard nighttime occurrence.

[Ikeeptrying]

Hi Lotte,

Yes, it was quick. I think my body is just sensitive to meds. I wasn't on a particularly high dose. .75 mg over a year's time. Looking back I guess it was a high dose but it was the amount prescribed. Augmenting on clonopin didn't help either. Nothing else was different that could have triggered the earlier onset of rls. I'm really at my wit's end now. Guess it's Norco from now til I can find something better. Thanks for writing.

[LotteM in reply to Ikeeptrying]

Sounds similar to my story except for your recent experience. I wish your was like mine. Isn’t it frustrating that waad (=we are all different)??!!

Have you tried diets? I have been gluten- and soyfree and vegan ( well not 100%, but still) for some 2 months and that may have helped a little too. I slumped terribly the last 2 weeks, and trying to get back on, because it simply felt better. But oh, the mind is weak! Well, mine is.

[LotteM in reply to Ikeeptrying]

What is your problem with Norco? Opioids appear very useful to treat RLS, but I can understand your hesitation. I assume you are familiar woth the paper on opioids for RLS? mayoclinicproceedings.org/a...

[Ikeeptrying]

My problems is that it's addicting and my neuro may cut me off at any time. Are you in the states? If you are then you're aware of the gloom and doom surrounding opiods. If I could be sure my neuro wouldn't stop prescribing it I'd be happy as could be.

[LotteM]

There is a RISK of addiction with opioids - as with quite a few other meds. But it doesn’t HAVE to be addictive in itself. It is now well known that that for a large part depends on your ‘make up’ ( genetics). And also what for and how you use it. Low amounts like used for RLS, especially when only taken in the evening for the usually nighttime symptoms run a much much lower risk. Dependence is something different. Most of us are dependent on our meds or other treatments to get something approaching a decent sleep.

No, I am not in the US, I am in The Netherlands with a vigilant but practical approach to opioids and other meds and substances often classified as ‘drugs’. I am very lucky in that way. Do print if the Mayo Clinic paper, have a read and have your neuro and/or gp read it and discuss it and what you can learn from it from your treatment. It just may help.

[Whippetmama]

I augmented on levodopa/,carbidopa I was totally off it for about 2 months with only tramadol and gabapentin but managed Then I hit a really rough patch and took 1/2 a tablet. It totally knocked me out for 8 solid hours of sleep and broke the awful cycle I was on. Since then, I have continued to take it as needed with no I'll effects except I will only take it at night and I sleep.

[Ikeeptrying in reply to Whippetmama]

I augmented on levodopa/carbidopa as well. So when you took it again there was no problem? That's wonderful. When you take it as needed, for me that would be every night. It's tempting but I'm afraid I'll augment again. Good for you for finding something that works for you. Thank you for your response.

[marsha2306]

Klonipan is not a med you augment on .....

[Ikeeptrying in reply to marsha2306]

You're right. Don't know what the heck was going on that night, sure felt like augmentation though.

[Whippetmama]

For me, as needed might be once a month or 2 nights in a row in a months time. So my regime might be 100 mgs of tramadol when I feel an attack coming on. Then, to act as a "bridge" until the tramadol kicks in, I use marijuana. If the rls is particularly intense or moves into both legs (typically with me only one leg is affected at a time) or very rarely into my arms or the tramadol isn't effective and smoking more mj doesn't work then, and only then do I take 1/2 a dose of my levo/ carbido and go immediately to bed because it really knocks me out when I take it so rarely. Literally, I go weeks without it at all. But usually 100 mgs of tramadol every 4-6 hours (not to exceed 400 mgs in 24 hours) does the trick. For the time being this is working for me.

[Ikeeptrying in reply to Whippetmama]

Thank you so much. I'm glad it's working for you, I'm just too afraid to try it again. BTW, As a dog person love your name.

[Parminter]

In my experience, it only takes one small dose to take you back to where you were. The brain says 'Oh yippee, we won't let her/him go this time!'

My slip was agonising for hours over whether to take a small extra dose of pramipexole, or take methadone. I had to drive two hundred miles the following day, over difficult roads through rough country, alone, and it would have been foolish to take the methadone and not sleep. Sometimes these choices are thrust upon us.

Hobson's choice.

Such is this condition.