Thanks for the welcome

[cpreisner]

Thanks for the welcome. I am so pleased to have found a group dedicated to this irritating and debilitating disease. I am a 49 year old woman and believe I have had RLS for many many years. I can remember times during my early adolescence when I had these sensations and my mom used to scold me for not being able to sit still in church. I have been taking Mirapex for the past 5-6 years - .25mg and it has worked fairly well. I am finding that the symptoms are presenting themselves earlier in the day now - so I have started to take 1/2 the dose around 3:00 and the rest around 6:00 pm. My only complaint with the medication is that it makes me awfully tired and sleepy - which makes my evenings very unproductive. Since this is the time when I normally work out, I find it hard to get motivated. I am wondering if anyone has experience with Requip and if it has the same side effects (drowsy). I also have concerns about some people experiencing compulsive behavior while on Mirapex and wondering if anyone has experienced this. Finally, I wanted to find out if anyone experiences the same symptoms as I do. Although the doctor has diagnosed RLS, the feelings that I get are not in my legs they are in my pubic area. It's very embarrassing to talk about and I haven't been able to find any information on the internet about this. When I explain this to my doctor she doesn't seem to have any further advice to offer. Since the medication is working, I think she feels it's all the same thing but it's always troubled me that I haven't really had the typical symptoms that I have read on all the sites. I'm going to start looking through the site now - looking forward to finally being able to share...

[ViewsAskew]

Welcome - that the symptoms are starting earlier likely means that you are augmenting. Augmentation, in regards to this class of drugs (dopamine agonists, which include pramipexole, ropinerole, and several others), means that your symptoms start earlier and often get stronger or move into other body parts.

Have you had a serum ferritin test? if so, what was your reading? It's not enough to have the doctor say, "It's OK." You need to know what it is. For anyone taking this class of drugs, your reading should be at least 100.

All of the drugs in this class can cause compulsive behavior. Have you experienced it? People here have - most of them stopped the drug. Some have had terrible problems because of it.

Although not common, many people do experience WED (RLS's new name) in their genitals. It's very uncomfortable! It can actually be anywhere. We've had members with it just about everywhere - toes, feet, legs, buttocks, back, stomach, genitals, shoulders, arms, even face. We're posted about genital involvement before - just not frequently. The majority of us experience some part of the leg or feet, next is arms in terms of common, then the rest of the body is less common.

I'm glad you're splitting the dose, rather than taking more, but since this is a hallmark of augmentation, it's probably a good time to be here and learn some more.

Let us know if you're looking for anything specific. Each of the moderators has a link in their signature - review those links as well as the Sticky Posts at the top of each section. We're here to help as best we can.

[badnights]

Have you ever had it in your legs? The gospel seems to be that it starts in the lower limbs, then moves elsewhere as the disease progresses. But personally I think the disease is not well enough understood yet for anyone to be able to say, no it's not WED/RLS, based on its absence in the legs. In fact, the diagnostic criteria don't require the abnormal sensations to be anywhere in particular.

the key points, if you have any doubt whether it's WED/RLS, are that there is an urge to move or tense or stretch the affected body part; this happens more in the evening or at night; the nasty sensations start shortly after you stop moving and try to relax;and they are relieved, at least partially, by movement.

If the Mirapex makes the sensations stop, then that's strong support for the diagnosis. I commend your doctor for recognizing it!

But now it's important - critical for your future health - that your doctor become informed about the newer knowledge concerning Mirapex, Requip, and their longer-term effect on WED/RLS patients. It has only recently - in the last few years - become evident that the initial relief provided by the dopamine agonist drugs disguises some potentially harmful longer-term effects which initially are manifested as augmentation. Augmentation is characterized by a greater severity overall, and specifically by one or more of : earlier time of day for onset of symptoms, faster onset after beginning to relax, spread to other body parts, or increase in intensity of the abnormal sensations. The deeper impact of augmentation is not fully understood, but some specialists have expressed concerns that augmentation might reflect changes in the brain chemistry that are permanent and harmful - I'm paraphrasing here, but even in published literature, which is typically cautious, the following phrases have been used: "However, after
10 to 15 years of experience with these drugs, concerns
regarding augmentation of RLS symptoms by these drugs
have made many RLS experts rethink the doses used to treat
RLS, and even whether these drugs should be first-line
drugs of choice for this disease."

You mentioned impulse control disorder, and quite apart from the risk of augmentation, ICD on its own is a serious concern. If you're experiencing any loss of control regarding eating, shopping, sex, that might be the manifestation of ICD and is something of serious concern that you should bring up with your doctor.

But I'm not focusing on that, because you haven't indicated that it's happening to you. Hopefully it never will. What you have indicated is that your symptoms are starting earlier in the day, and that's classic augmentation. Doctors are caught unawares by this because almost no disease on earth responds that way to a medication, except WED/RLS as it responds to dopamine agonists. At first the drugs work, then they make the disease worse. It's a novel thing for most doctors, so the sooner you make yours aware of the literature on the subject, the better.

Ann asked you if you'd had a blood test that measured your ferritin level. That's because low ferritin is associated with more severe symptoms, and because people with low ferritin who take dopamine agonists (Mirapex, Requip) are way more likely to augment. The recommended level for WED/RLS patients is over 100!!! whereas most labs will say 20 is normal, so your doctor might tell you your ferritin is normal, but ask what the actual number is, because for WED patients, especially WED patients taking dopamine agonists, 20 is dangerously low. I would guess you're already augmenting, but jacking up your ferritin (if it's low) by taking oral iron is still likely to be of benefit. (Some people can't raise their ferritin by taking oral iron, and others - fewer - raise it but experience no reduction in symptoms.)

I should describe how augmentation is best treated, at this point, but I am wearing out I will refer you to the authorities, and hopefully you will ask questions, and other people will chime in and describe how to deal with augmentation. Below my name at the bottom of every post are two links. The first leads to the WED Foundation's brochure about augmentation. It's a good intro to the subject. The second leads to a post on this bulletin board, where I have provided more links.
- There are papers you can print to take to your doctor that show that ferritin levels in WED/RLS should be over 75 or 100.
- There is the paper I quoted from above, that cautions against use of dopamine agonists and recommends much lower maximum doses than are currently used - that is the paper by Buchfuhrer. It's a very good one to print!
- Print the extract from the book Management of Restless Legs Syndrome. This is the one that describes how to manage augmentation and how to withdraw a patient from dopamine agonists.

This information is medical literature that your doctor can trust and validate. It may seem odd to print information to take to your doctor, but if she's progressive enough to be able to diagnose this disease, I suspect she is one of the many who would be open to looking at information you have dredged up on your own. Good luck!