Exchange mild discomfort now for longer time to reach augmentation?

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Exchange mild discomfort now for longer time to reach augmentation?

Post by MikeD »

I have been dealing with RLS for several years. Was on steadily increasing amount of Gabapentin, Requip, and now NeuPro and Tamazepam. I have read occasional articles about the long term prospects for RLS, but it all seems like it's talking around the subject and not telling us straight out what lies ahead.

Based on one search paper and several doctors' and patients' opinions, here is what seems to me to be the likely long term case. Am I on track, or am I missing some (hopefully) good news.

1. If we live long enough, we RLS patients are going to experience augmentation (decreased effectiveness of RLS meds with no new ones in the pipeline, and worsening symptoms).
2. We can use the amount of meds needed for symptom relief now, but we are likely to hit an augmentation wall sooner or later. This includes hitting that wall, then switching to a different med, hitting augmentation with it, etc.
3. Or, could we use only the minimum dosage needed to bring symptoms to the tolerable level in exchange for longer time until augmentation sets in? This may tie in with some discussion areas dealing with opioids and whether to use them or not.

If my descriptions are correct, then we will experience comfort for awhile, followed by misery; or we will experience mild comfort accompanied by mild symptoms now, in exchange for longer time before augmentation and misery.

Please tell me there's a more comfortable journey ahead.


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Re: Exchange mild discomfort now for longer time to reach augmentation?

Post by Rustsmith »

MikeD, the statistics from research studies are that about 8% of RLS patients on a dopamine agonist each year. Some of us (like me) will augment in year 1. Others may be able to go for years before it hits and no one knows why the different time perioids.

We know that keeping your DA dose low will extend the time and that it is VERY important that your ferritin number be in excess of 100. Low ferritin and/or a DA dose above the minimum levels will both reduce the time until augmentation hits.

The other thing that isn't discussed much about our future is that our RLS will generally worsen with time. For some of us, this may be a gradual worsening that isn't really noticeable except in retrospect. For others (like me), it can be a step change increase that occurs for no known reason.

It is for this reason that many of us are so involved with RLS advocacy right now. Once we augment on one or two DAs, our next hope is gabapentin or it's cousins. But they only work for about 65% of us. The rest of us will have to live with low dose opioids as our primary treatment and if they take them away from us, we are up a very fast flowing creek with no paddle.

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Re: Exchange mild discomfort now for longer time to reach augmentation?

Post by stjohnh »

I don't think your conclusions are entirely true. Yes, many people on dopamine agonists will have augmentation. But not all, and keeping dose low and ferritin high deceases that likelihood. The general recommendation for people on dopamine agonists alone is to take an amount that makes living tolerable, but does not completely eliminate the urge to move-jumpy legs symptom. Completely eliminating urge to move symptoms is very likely to lead to rapid augmentation. That doesn't mean live in misery, it means having a short spell of mild urge to move symptoms during the late afternoon or early evening.

Unfortunately, there doesn't seem to be much in the way of complete symptom relief without serious side effects with currently used medications. Using small doses of multiple medications has helped me and quite a number of other folks cope with severe RLS, augmentation and side effect problems much better than using higher doses of just one or two medications.

As far as good news goes, I think the most promising news is that dipyridamole (a currently available medicine that is not generally used for RLS) may help quite a number of people get better control of RLS symptoms than currently accepted medicines that are available. It will probably take a few years for medical experience to get enough information to say for sure how much help that will be. Additionally, the research into adenosine pathways has opened up a number of research possibilities for new medications, however new medications usually take many years to get approved.

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Re: Exchange mild discomfort now for longer time to reach augmentation?

Post by legsbestill »

I agree entirely with Holland. It is possible that ultimately one’s current regime will be less successful but by using a multi-faceted (multi-drug) approach, there are likely to be options when that happens eg increase one drug while decreasing another or taking a drug holiday from one while using a greater amount of others.

I have definitely found that using a mix of drugs, each at a relatively low dose, is far more successful than relying on a single drug.

Raising iron levels is also very helpful as is a generally ‘clean’ diet and moderate exercise particularly weight lifting.

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