Cycling DA's (Requip)

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Oozz
Posts: 217
Joined: Wed Oct 11, 2017 8:09 pm

Cycling DA's (Requip)

Post by Oozz »

Given the probability of augmentation, I have been very hesitant to go on Dopamine Agonist for a long period of time. Are there any issues with cycling on and off weekly or bi-weekly? My hope is that this will prevent augmetnation, at least somewhat. I haven't had a chance to ask my doctor this.

Rustsmith
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Re: Cycling DA's (Requip)

Post by Rustsmith »

In a Foundation webinar that was presented yesterday by Dr. Michael Silber of the Mayo Clinic, he discussed the probabilities associated with augmentation. He described several factors that can increase the chances. The main ones were:

1) High dose of dopamine agonist
2) Low iron stores (ferritin levels)
3) Duration of dopamine agonist treatment
4) Severity of symptoms prior to treatment

He also presented statistics from both Johns Hopkins and Mayo on the probability over time. The Hopkins study showed increasing probability until almost everyone had augmented after about 10 yrs. The May numbers were not as drastic with only about 60% augmenting after about 4 yrs. He said that the difference was that Hopkins would discontinue DA treatment as soon as there were signs of augmentation where Mayo often works with the patient to keep iron levels up and will either slowly increase the dose or will switch to the Neupro patch.

So, given all of that, it would seem logical that if your RLS is not so severe that you can get by for several days without Requip, then cycling on and off would either reduce your chances of augmentation or extend the time until it happens. Of course, that also assumes that your ferritin levels are at or above about 100.

Of course, your other option would be to try the alternative of an alpha-2-delta med like gabapentin (assuming that you don't have the potential for unwanted side effects). Augmentation is not an issue with these meds, but they are not effective for everyone.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Oozz
Posts: 217
Joined: Wed Oct 11, 2017 8:09 pm

Re: Cycling DA's (Requip)

Post by Oozz »

Thanks for the quick response. Am i able to replay the webinar?

GABA didn't work for me, but I'd give it a second try if needed.

Rustsmith
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Re: Cycling DA's (Requip)

Post by Rustsmith »

If you are a Foundation member, you can view the webinar and download the slides on their website (http://www.rls.org). If you aren't a member, just the benefits of access to the information in their past webinars far exceeds the cost. And if you don't feel you can afford the cost, give the Foundation a call and ask about a scholarship.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
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Location: Palo Alto, California

Re: Cycling DA's (Requip)

Post by stjohnh »

I augmented a couple of years ago on pramipexole and then neupro patches. After that I went off the dopamine Agonist for a week or two to reset my receptors and decided to restart pramipexole at a much lower dose, and keep it at a lower dose. I did that by using pramipexole as my primary RLS treatment and also adding small doses of gabapentin and kratom ( similar to a low-dose opioid). I also made sure that my treatments included having a spell every day and which my urge to move symptoms were obvious. I made sure I did not try to eliminate all RLS symptoms. That plan kept me from augmenting for 2 years on pramipexole. I have since I switched to dipyridamole as my primary treatment but I have continued to require a very low dose of pramipexole. I think it's possible to avoid augmentation by following these principles.

Low doses of multiple RLS medicines, never treat to complete elimination of RLS symptoms, never increase the dose of dopamine agonist.

There are several people on these boards that have successfully used various cycling plans and have avoided augmentation.
Blessings,
Holland

Oozz
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Joined: Wed Oct 11, 2017 8:09 pm

Re: Cycling DA's (Requip)

Post by Oozz »

Thanks for the tips

legsbestill
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Location: Dublin Ireland

Re: Cycling DA's (Requip)

Post by legsbestill »

Holland’s post said almost everything I would say. Rls often responds well to multiple drug treatments, each at a low dose, so it may be worth having at least one other drug treatment on the go at the same time and, as Steve says, keep your serum ferritin high.

I do wonder whether augmentation will occur if the d/a dose is maintained at a very low level and other drugs used to treat breakthrough symptoms. Keep us posted.

Oozz
Posts: 217
Joined: Wed Oct 11, 2017 8:09 pm

Re: Cycling DA's (Requip)

Post by Oozz »

Will do. My ferritin levels are w/in range. Everything I have tested (iron, vitmains, ldl, etc.) for has come back within range. Although I've had RLS for a few years, formally diagnosed for about a year, I think that, for me, its stress-related.
.
The DA makes me groggy and the quality of sleep isn't quite as good. My goal right now is to use them as a tool when I need rest, then, take weekly breaks to find a longer term solution. I was having some success w/MMJ, but I couldn't pin down the correct dosing due to state laws. Anyways, thankf or the tips.

stjohnh
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Re: Cycling DA's (Requip)

Post by stjohnh »

Oozz, you need to find out the numerical result of your ferritin test. Usual "normal" is around 20. RLS patients need it to be above 75, preferably above 100.

Seems like the resuts of MMJ reported on these boards is that it helps quite a few people sleep better, but helps only a few with leg jumping symptoms.
Blessings,
Holland

Oozz
Posts: 217
Joined: Wed Oct 11, 2017 8:09 pm

Re: Cycling DA's (Requip)

Post by Oozz »

I’m glad you mentioned that St. John. My iron serum is at 101 ug/dL and my ferritin is 254ng/ml, so I’m good there.

MMJ does calm my legs, but I cannot sleep on it; it’s a horrible paradox.

Rustsmith
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Re: Cycling DA's (Requip)

Post by Rustsmith »

Oozz, by MMJ do you mean a product that is high in CBD or THC? Many of us find that the THC products help with sleep. But of course it goes without saying, everyone is different.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Oozz
Posts: 217
Joined: Wed Oct 11, 2017 8:09 pm

Re: Cycling DA's (Requip)

Post by Oozz »

THC improves my sleep quality, but I am unable to go to sleep (onset) once the psychoactive component kicks in. My mind won’t shut off.

I just got access to measurable thc/cbd products. I haven’t had enough time to test it, but it seems like the cbd also prevents me from falling asleep (onset). Not sure about sleep quality.

Both seem to get rid of my RLS immediately.

I’ll log all my experiences in the MMJ threwd, just so that others have an additional data point.

ViewsAskew
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Re: Cycling DA's (Requip)

Post by ViewsAskew »

I have been cycling for many years. How I've done it has changed over time, but it's always worked. Currently, I take a standard dose of methadone each day which is 40% of what I need for coverage. For the seven days, I do this (methadone the first, pramipexole the second in percentages):
40/60
60/40
80/20
100
100
80/20
60/40

It helps keep my methadone dose lower over time and allows a 2 day break each week from the DA. Because the methadone has such a long half life, I've not had much success with taking 100% pramipexole for X days. It takes a week for the methadone to build back up, so each time I switched, I'd have nasty symptoms. That led to this method.

When my serum ferritin is high (I have had several infusions), I can take pramipexole for at least two months without issue - but as it declines I have to cut back on consecutive days.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

legsbestill
Posts: 561
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Cycling DA's (Requip)

Post by legsbestill »

Hi Ann,

Thank you for posting your current system which is very interesting. I have resumed pramipexole in a very low dose as part of my dipyridamole experiment. It is difficult to know which of the pramipexole or the dipyridamole is responsible for my current good coverage but I suspect the pramipexole is at least a strong contributor and may be solely responsible.

In an attempt to ensure its continuing effectiveness at a low dose, I am considering trying to eliminate pramipexole for two days a week - also in the hope of preventing the re-emergence of augmentation.

Could you indicate what dose of pramipexole you take - ie how much in mg is for example 20%. Also do I understand correctly that you take enough methadone to provide 40% coverage every day and on lower pramipexole days you increase the methadone dose to provide additional cover?

Many thanks

ViewsAskew
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Location: Los Angeles

Re: Cycling DA's (Requip)

Post by ViewsAskew »

So - my percentages....

Take whatever you need for 100% coverage (or 95) and divide by 4 or 5. For me, 5 works better. For the pramipexole, I use about .35 mg if that is all I take. I use .125 for the 40% and .0625 for 20%.

And, yes, you understood it correctly - methadone every day for, ranging from 40% of the coverage coming from it, up to 100%. (Well, actually, slightly less, as I try for about 95% coverage.)
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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