1st post - Mirapex

[konaPel]

Hi, I have been diagnosed with RLS in 2000 from a sleep study in Toronto. I have been fairly lucky in that my RLS has not been bothering me too much (hardly at all) for the last 5 years. I thought it had a lot to do with me taking magnesium.
However it has started back up or so I think. It started with tightening in the calves. Not cramps, not normal RLS , have to move my legs. However it would wake me up and then I couldn’t go back to sleep. I have seen my family doctor a couple of times and the last time I was very upset. I also have depression (since 2000) and take Desipramine and Clonazepam to offset the fact that anti depressants bothers RLS. Doctor prescribed Mirapex and said well I should take it so then we both would know if in fact it’s RLS bothering me or not. I agreed, it makes sense. However I have read all about Mirapex (he wanted me to take it years ago) and I am AFRAID of it. My symptoms are happening more as RLS now as well...in my arms. Has anyone had the tightening in calves and think that is RLS?
My important question for advice is this: considering my RLS symptoms and events are like 2 or 3 times a week (last night both arms bothered me from 2-6 am), don’t start early in the evening, aren’t bothering me until after I fall asleep (which is not what was happening years ago) should I try the Mirapex to figure the calves thing out? I am leaning more and more to no I shouldn’t. I am thinking of asking to see a neurologist who might know about the ferritin connection more and maybe be able to get iron infusions. I am taking Feramax daily with 500mg Vit C. My last ferritin level was 45 (I’m in Canada but I think the number is the same just a different name for measurement). I was hoping to get it up to at least 100 but I now am reading all about the brain iron issue. I know some people might think well it’s not bothering you everyday but with my depression when I don’t sleep my mood goes way down. I have low energy from the depression as it is so adding a night with hardly any sleep makes things even worse. Thanks for any help.

[Rustsmith]

It wouldn't hurt to try the Mirapex for one or two nights. In the past, some doctors would give a patient one or two doses of Carbidopa/Levodopa to do just what your doctor has suggested. Carbidopa/Levodopa is almost guaranteed to cause augmentation if taken regularly, but for just a night or two it is "safe".
As for the tightening in your calves, many of us get symptoms like that as a sort of premonition of RLS. One of my premonition symptoms is a sort of tightening of the calves. When that happens, I usually get up immediately and go soak my legs in a tub of hot water.
As for your arms, RLS can hit the arms as well and you don't have to be experiencing augmentation for that to happen. One of the US based RLS experts says that RLS should stand for "Restless Limbs Syndrome" since it occurs in more than just the legs. Before I was ever treated, I was experiencing RLS in my legs, arms and abdominal muscles.

[badnights]

The fact that it bothers your 2 or 3 nights a week is bad enough, don't go thinking it's not bad. Sleep is important and not getting enough of it is very unhealthy (and may be contributing to your depression). Losing even one night a week would be bad.

Your ferritin is indeed low, and probably reflects low brain iron. With ferritin that low, you should be eligible for an infusion referral from any doctor who has a decent amount of recent experience with WED/RLS. If you're in western Canada and can get in to see Pawluk at U of A, he will refer for infusions (depending on your situation) for ferritin below 40.

If you're taking one FeraMax a day that's 150 mg elemental iron, and you're taking with vit C - I would think it should be helping. How long have you been taking it? Do you have any gut issues (something that might make it hard for iron to be absorbed)?

I would avoid long-term Mirapex until you can get more iron to stay in you, but as Steve said, it should be ok to take it for a week (at least that long, since you don't get symptoms every night) just to see if it makes the sensations go away. You would have to take it 2 hr before bed because of its long time to take effect. Using a dopamine-type medication that way is a valid aid to diagnosis. However, there is a danger involved. Although rare, it's possible to augment within days on pramipexole or ropinirole (viewsaskew and I both did).

So an even better tool would be levo-carbidopa. It has a fast onset of action, so you could wait until you're experiencing the sensations and take it then, it should calm them down in 15 min or 30 at the most if you really are experiencing WED/RLS. You would not need to take it every night for a week, like you would have to do with Mirapex. Levo-carbidopa/Sinemet is a big no-no for daily use in WED/RLS because the risk of augmentation with it is so high, but it would be more effective than Mirapex when used as an aid to diagnosis.

If you do have to take medications for WED/RLS, and especially if your ferritin is still that low, you could try Horizant. There is no danger of augmentation with the anti-convulsant class of drugs. Horizant is approved for WED/RLS in the US., and is recommended as the medicatino to try first for a patient whose WED/RLS is painful, and for others for whom a dopamine-type med is ill-advised (e.g. low ferritin).


I don't experience the tightening sensation you speak of, but I have heard others on this board speak of their symptoms that way. Tugging or tightening.

Not all ADs bother WED/RLS. You're currently taking a tricyclic, which is the type of AD that is more likely to bother WED/RLS. You might want to try something different to see if it helps the depression without worsening the WED.

I'm glad you came here, I hope things will work out. It cannot hurt to see a neuro (don't know what you'll get, tho - even neuros who specialize in movement disorders - which is definitely what you should be asking for - sometimes don;t know anything about WED/RLS. But it can't hurt if you're arming yourself with information, as I can tell you are. Hugs, and I hope you sleep tonight!

[konaPel]

It wouldn't hurt to try the Mirapex for one or two nights. In the past, some doctors would give a patient one or two doses of Carbidopa/Levodopa to do just what your doctor has suggested. Carbidopa/Levodopa is almost guaranteed to cause augmentation if taken regularly, but for just a night or two it is "safe".
As for the tightening in your calves, many of us get symptoms like that as a sort of premonition of RLS. One of my premonition symptoms is a sort of tightening of the calves. When that happens, I usually get up immediately and go soak my legs in a tub of hot water.
As for your arms, RLS can hit the arms as well and you don't have to be experiencing augmentation for that to happen. One of the US based RLS experts says that RLS should stand for "Restless Limbs Syndrome" since it occurs in more than just the legs. Before I was ever treated, I was experiencing RLS in my legs, arms and abdominal muscles.

Thank you for your reply. No when I have the tightening in the calf it just stays as tightening, doesn’t go into RLS feelings. I have been having RLS for sure in my arms though. I am going to go back to family doctor and ask for Levo-Carbidopa instead though. I think I know will just try it when I have the tightening to see what happens.
Thanks again!

[konaPel]

The fact that it bothers your 2 or 3 nights a week is bad enough, don't go thinking it's not bad. Sleep is important and not getting enough of it is very unhealthy (and may be contributing to your depression). Losing even one night a week would be bad.

Your ferritin is indeed low, and probably reflects low brain iron. With ferritin that low, you should be eligible for an infusion referral from any doctor who has a decent amount of recent experience with WED/RLS. If you're in western Canada and can get in to see Pawluk at U of A, he will refer for infusions (depending on your situation) for ferritin below 40.

If you're taking one FeraMax a day that's 150 mg elemental iron, and you're taking with vit C - I would think it should be helping. How long have you been taking it? Do you have any gut issues (something that might make it hard for iron to be absorbed)?

I would avoid long-term Mirapex until you can get more iron to stay in you, but as Steve said, it should be ok to take it for a week (at least that long, since you don't get symptoms every night) just to see if it makes the sensations go away. You would have to take it 2 hr before bed because of its long time to take effect. Using a dopamine-type medication that way is a valid aid to diagnosis. However, there is a danger involved. Although rare, it's possible to augment within days on pramipexole or ropinirole (viewsaskew and I both did).

So an even better tool would be levo-carbidopa. It has a fast onset of action, so you could wait until you're experiencing the sensations and take it then, it should calm them down in 15 min or 30 at the most if you really are experiencing WED/RLS. You would not need to take it every night for a week, like you would have to do with Mirapex. Levo-carbidopa/Sinemet is a big no-no for daily use in WED/RLS because the risk of augmentation with it is so high, but it would be more effective than Mirapex when used as an aid to diagnosis.

If you do have to take medications for WED/RLS, and especially if your ferritin is still that low, you could try Horizant. There is no danger of augmentation with the anti-convulsant class of drugs. Horizant is approved for WED/RLS in the US., and is recommended as the medicatino to try first for a patient whose WED/RLS is painful, and for others for whom a dopamine-type med is ill-advised (e.g. low ferritin).


I don't experience the tightening sensation you speak of, but I have heard others on this board speak of their symptoms that way. Tugging or tightening.

Not all ADs bother WED/RLS. You're currently taking a tricyclic, which is the type of AD that is more likely to bother WED/RLS. You might want to try something different to see if it helps the depression without worsening the WED.

I'm glad you came here, I hope things will work out. It cannot hurt to see a neuro (don't know what you'll get, tho - even neuros who specialize in movement disorders - which is definitely what you should be asking for - sometimes don;t know anything about WED/RLS. But it can't hurt if you're arming yourself with information, as I can tell you are. Hugs, and I hope you sleep tonight!

I don’t know how to reply without using the quotes so that is why I am using them. Thank you for your kind reply. You are right and I do realize the connection between lack of sleep and depression. That is why I have been fairly emotional during the last 4-6 weeks. I rescheduled my family doctor appt from Sept 11 to Sept 4 (earliest) and I will be asking for more bloodwork to measure my ferritin to see if it has increased. I will also ask for referral to neurologist. I realize that even those specialists don’t know enough about WED/RLS unfortunately. I live in Ontario but thank you for the name of Dr Pawluk. I also will ask my doctor for prescription to Levo-carbidopa. As you explained I feel better about trying that in the middle of the night when I am actually experiencing the tightening in calf. I can also take it if I am experiencing RLS in my arms or legs as well. I know the fast augmentation is rare but enough to scare me from trying the Mirapex.
I don’t have any gut issues luckily that I know of. I have been taking FeraMax since late June.
According to the RLS foundation blog my Desipramine is possibly one of the better ADs to take for people with WED/RLS. I have been on it since late 2000 (had tried quite a few other ADs) and so I would not want to have to start trying new ADs.
It seems I have been experiencing more of the tightening in the calves and more RLS in the arms. I have tried quite a number of different vitamins, leg splints, etc to try and figure out the tightening. I do feel more hopeful now that I will be able to get an answer soon. I did order a bottle of CBD oil that should come this week and I will try that. I just found out that my husband has a container of CBD topical cream (wish I had know that earlier lol) so last night I used it for a pain in my thigh that comes from a L5 back issue (referred pain) and it went away quite fast. I am hoping that it will work as well for tightening and/or any RLS symptoms.
So I will be trying to talk the doctors into increasing my ferritin and if necessary an infusion for brain ferritin. I had not heard of that before reading here. I used to belong to this foundation quite a few years ago when I was really bad. I am very happy that this wonderful foundation and discussion board is still here. The discussion board is priceless. If I do need medication for WED/RLS then I will ask about Horizant.
So thank you so much for your detailed and informative answer to my first post! Hugs to you as well as we seek good sleep.

[badnights]

You can click on the big "Post Reply" button (left side above and below all the posts in a Topic) - that will open a box without a quote in it. You can type directly into that box. Notice there are buttons above the box for formatting; to quote part of someone's reply, you can copy and paste that part into the box, then select what you pasted and click on the "Quote" button.

I also will ask my doctor for prescription to Levo-carbidopa. As you explained I feel better about trying that in the middle of the night when I am actually experiencing the tightening in calf. I can also take it if I am experiencing RLS in my arms or legs as well. I know the fast augmentation is rare but enough to scare me from trying the Mirapex.

That's a good idea, but I will re-iterate, since I don't think I was clear, that people with WED/RLS are even more likely to augment on levo-carbidopa than Mirapex or Requip - if it is used daily. The benefits for a diagnostic test are, as you said, the immediate effect. If it works, then as soon as you're sure it works, either stop taking it and look for a better solution (iron infusion, occasional-use opioid (haha no one would give you that, but it would work), or if ferritin levels have been raised, Mirapex or Requip) , or if you weren't taking it daily, consider keeping it for occasional use. There has not been much work done that I'm aware of on risk of augmentation if it's used every day vs every 2nd day vs 3 days a week, nor for high vs low dose on the days that it's used when it is used occasionally. So we don't really know what the danger is.

To put it in perspective, I use levo-carbidopa occasionally without augmentation, one (rarely two pills) at most 2 nights in a row - rarely 3 in a row but then I stay off it for three nights.

[konaPel]

Thanks for the info about replying. It was good that you explained that people are more likely to augment on levo-carbidopa. I definitely won't use it daily. I plan on using it only if in the middle of the night I feel that tightening for diagnosis purposes only. I won't even use it 2 nights in a row. I probably will only take 2 pills at most. After trying it out twice I will have my answer if the tightening goes away or not.
I'm not going to use even if what I know to be RLS feelings are happening. That I will try to get some help with by raising my ferritin levels.

Thanks again.

[konaPel]

You can click on the big "Post Reply" button (left side above and below all the posts in a Topic) - that will open a box without a quote in it. You can type directly into that box. Notice there are buttons above the box for formatting; to quote part of someone's reply, you can copy and paste that part into the box, then select what you pasted and click on the "Quote" button.

I also will ask my doctor for prescription to Levo-carbidopa. As you explained I feel better about trying that in the middle of the night when I am actually experiencing the tightening in calf. I can also take it if I am experiencing RLS in my arms or legs as well. I know the fast augmentation is rare but enough to scare me from trying the Mirapex.

That's a good idea, but I will re-iterate, since I don't think I was clear, that people with WED/RLS are even more likely to augment on levo-carbidopa than Mirapex or Requip - if it is used daily. The benefits for a diagnostic test are, as you said, the immediate effect. If it works, then as soon as you're sure it works, either stop taking it and look for a better solution (iron infusion, occasional-use opioid (haha no one would give you that, but it would work), or if ferritin levels have been raised, Mirapex or Requip) , or if you weren't taking it daily, consider keeping it for occasional use. There has not been much work done that I'm aware of on risk of augmentation if it's used every day vs every 2nd day vs 3 days a week, nor for high vs low dose on the days that it's used when it is used occasionally. So we don't really know what the danger is.

To put it in perspective, I use levo-carbidopa occasionally without augmentation, one (rarely two pills) at most 2 nights in a row - rarely 3 in a row but then I stay off it for three nights.

“bad nights” I just wanted to run something by you. I received my paperwork in the mail from RLS and I also saw on website about the 5 criteria for having WED/RLS. When I am experiencing this tightness in my left calf it does not make me need to get out of bed to move leg or make me have those jumpy feelings. So I am now not going to take any drugs to diagnose if it’s RLS. I still will continue to take my iron and see my doctor and see for bloodwork to see if ferritin is raising and also a referral to a neurologist. But I think I can eliminate the need to take mirapex or levo-carbidopa. I will be seeing my chiropractor first and then go back to physio. I believe something with my feet or back is causing the tightness. Do you agree as well that if feelings aren’t making me have to get up to move then it’s not RLS? Thanks.