Mirapex and augmentation

[LBBlack]

Hi, fellow and sister RLS/WED sufferers! I'm an American Benedictine sister here on false pretenses because the profile does not want anyone to be born before 1930, and I was born in 1926. Anyway, for the last two years I have had good medical care by a nurse in a neurologist's office. After months of being unable to sleep well because of jumpy legs, now Gabapentin and Mirapex give me generally good sleep. Dosage has gradually increased and I wonder if there is any minimum level of Mirapex where augmentation kicks in?

[TEAH35]

I've been taking the Australian version of Mirapex, called Sifrol, with a 100% success rate in controlling the symptoms. However I'm unsure as to when I can expect the dreaded augmentation to arrive. I could have another few good years ahead of me with taking Sifrol, but then it could be just around the corner. I have not heard of any successful way in forecasting it's impending arrival.

[LBBlack in reply to TEAH35]

Thanks for your encouraging comments. So far I have been at the same dosage (2 tablets at night and one during the day) for about 6 months at least, and while my legs bother me a bit during the day, I can tolerate that as long as I can sleep.

[Madlegs1]

It's very much a personal experience.

If you are having to increase the dose to prevent symptoms- then you are already experiencing augmentation.

Some people reset the clock by not taking any DA for a few days every now and then. Tramadol can be taken for those few days.

The current thinking is to take small amounts of a number of meds to vary the cover and try to avoid augmentation or tolerance.

Good luck.

[LBBlack in reply to Madlegs1]

This is a very belated reply, but I did appreciate your reply re: augmentation. I do indeed experience it with mirapex, but my neurologist nurse will not let me change Mirapex dosage just now. I also take 400 mg gabapentin, 3 at night and one during the day. I had a serious bout of Asthma shortly after I started posting, and not being able to breathe, and being far from any help by a pulmonologist, I had to drop off list. I finally have hopes of seeing a pulmonologist in three weeks. I've had asthma all my life (90+ years) but until the past couple years have lived in an urban environment. The asthma has let up somewhat now, and the RLS is moving to center stage.

I still sleep fairly well most nights, but during the day my legs get very jumpy. I have found one way to relieve that which may sound very basic but it works for me. Frequently during the day if I sit down, with or without raising my legs, the RLS kicks in. I've found that if I sit with my feet on a stool that raises my knees higher than my hips the jumpiness stops. It beats walking when breathing is hard.

The cocktail of several RLS meds at lower doses makes sense to me, but finding a neurologist that will agree is another problem.

[Hidden]

Augmentation can kick in taking even a low dose, but more so with a higher dose. The recommended dose that the RLS experts are now saying for Mirapex no higher than 0.25mgs thats just two pills of the lowest dose. You will know when its augmentation when your symptoms feel worse, they start earlier in the day, and not work as well at night, If you didnt have symptoms in your arms or torso before you were taking Mirapex or any dopamine med and its started to now, that is another indication its augmentation. You increase the dose and all is well again you are getting relief again, then after a while its back to the symptoms as i have stated.

[LBBlack in reply to Hidden]

So far my neurology nurse believes I don't have to worry about augmentation so I'm hoping for the best. However, it's always helpful to know about the alternatives.

[involuntarydancer]

Hi and welcome on here, LBBlack. There is a link between low iron levels and augmentation so be sure to get your serum ferritin checked (get the actual figure - they frequently just tell you you are ‘normal’ which can be as low as 20 - this is far too low for us rls-ers - we need to be aiming to get above 100).

Raising iron levels can also help with symptoms generally. My symptoms improved a lot when I got my serum ferritin up though unfortunately this is not the case for everyone.

In your shoes I would concentrate on keeping the mirapexin dose as low as possible and using something else for breakthrough symptoms (optimally an opioid such as tramadol or OxyContin).

I augmented on pramipexole and discontinued it a couple of years ago. I have reintroduced it at 0.044mg daily (I think this is about 0.065mg in US measurements). I take a break from the pramipexole every 7 to 10 days to try to avoid augmentation. I can take a break because my dose is so low. It is not recommended to go on and off pramipexole if the dose is higher however. I have heard (direct from a medical doctor who knows quite a bit about rls and it’s treatments) that if you keep iron levels high and dose low there is a good outcome for avoiding augmentation on mirapexin. I hope so!

[LBBlack in reply to involuntarydancer]

As far as I know my iron levels are OK, and they are checked regularly. I discovered online that antacids and a number of foods can block absorption of iron tablets if taken at the same time.

[LotteM in reply to LBBlack]

LB, I encourage you to read the above post by involuntarydancer again and pay extra attention. Your ironlevels may well be “OK” or “normal”, but that may not be enough when you suffer from RLS. You have to ask specifically for the serum ferritin level (the part of iron bound to the body) and it needs to be not just OK or normal, but well above average. Ask for the exact number for ferritin, and if (well) below 100ng/l start taking an iron supplement. It is explained on the Johns Hopkins website by the people who researched this aspect: hopkinsmedicine.org/neurolo...

[LBBlack in reply to LotteM]

I started a reply to you but it disappeared so I reply again. I intend to speak to me neurology nurse and to my MD and care provider where I live, about ferritin levels, as all the info given me is general iron level. Wish me luck! Self diagnosis is not always welcome.

[Parminter]

Looking back, my pramipexole started augmenting almost immediately. It is a long upward curve, not a sudden onset.

I am now seeing to iron levels, which were through the floor. Hope, hope, hope!

Remember, the medical profession assumes, mostly correctly, that women will not lose iron after menopause, and will, on the contrary, often have dangerously high levels.

We just seem unable to store it.

[LotteM]

Parminter, your post makes me wonder. Isn’t it weird in this day-and-age of big data that ‘normal’ iron levels have only one figure (range)? You would expect by now at least age- and gender-specific numbers (curves). Maybe too basic to calculate.