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dwbessire · Post by **dwbessire** » Sun Jul 03, 2011 10:24 am

Thank you so much Susan, Beth and Betty for such thoughtful and helpful responses. I suspected about as much from the Goodwin claims...but I feel that I must explore as much as possible from all sides in order to be able to offer informed help to my friend. I really appreciate all of your recommendations....and will pursue them all.

It has already become clear to me that she needs to begin some baseline measuring of several important things, including ferritin, Vitamin D, Magnesium. She will be doing that, I hope, soon with a reputable neurologist who has treated RLS. I don't think her current internist doctor has considered any of these things because she is not yet familiar with most of them. He has relied upon meds for control. As I mentioned before, Mirapex has been very effective for her but her insurance has balked at paying for it. They will pay for Neurontin and it is all she has right now. In the beginning it was more effective than it has been of late. She has used Requip as well but her insurance will no longer pay for it. I am still puzzled as to why Mirapex and Requip would be rejected by Medicare and Insurance?

She seems to have luck with Ativan for sleeping but I will mention the other suggestions to her and she can discuss with her doctor.

Thanks to all of you who have responded, I feel like we have some really good information to start with and will pursue most of the suggestions as she continues to seek relief.

Betty/WV · Post by **Betty/WV** » Sun Jul 03, 2011 12:56 pm

dwbessire: Does your friend have a Part D plan for her medicines? I don't know where you are located but we have a part D plan especially for meds. and with that we have a co-pay. But I take Mirapex (pramipexole) and my Part D pays for it, with me paying a co - pay. Meds aren't covered through Medicare or a supplement. You could can Medicare and ask about the Part D.

If she can get Neurontin, I can't understand why she couldn't get Mirapex.

BETTY/WV

dwbessire · Post by **dwbessire** » Sun Jul 03, 2011 1:42 pm

Thanks, Betty...I will have to inquire more about this with her but from what she has told me, her insurance paid for the Mirapex and for Requip at some point along the way but have recently rejected paying for it even though properly prescribed by her physician.

I do not think she has appealed this decision and it may be worthwhile to do so.

I will have to check to see if she has part D coverage, too. From what I can gather so far, there is a generic available for Neurontin and that is what she is currently using. It is not that expensive. She does not think that there are any generics for Mirapex or Requip.

Your comments are very helpful to me as all this represents more pieces to the puzzle!

I have ordered the recommended books from Amazon and should have them within 4-5 days.

My curiosity has been tweaked about Jill Gunzel, too. I am wondering why she is referred to as the "Rebel". I was able to purchase her book at Amazon as well. I am anxious to look at all sides and everything out there that might be helpful. I will check out her website soon but realize that will be biased in her favor.

It is really quite interesting and kind of overwhelming to me the number of different things out there that have given one or more people some relief....Seems to me there is some evidence that things which give people hope and positive or confident feelings or enjoyment seem to trigger some relief....perhaps stimulate the production of endorphins and/or dopamine which then quell RLS symptoms.

It seems unusual that there would be so many different things that have worked for some RLS sufferers. I also suspect that if the answers are ever found they will not be simple but rather some combination of factors.

At any rate, I am bother fascinated and frustrated as I dig deeper and deeper into this and I have really just gottens started.

I have a Masters Degree in Biology and was a teacher of biology for many many years so have considerable background, training and experience to at least understand most of the technical and medical aspects that I am encountering.

I do appreciate your helpful responses!

Post by **Polar Bear** » Sun Jul 03, 2011 7:07 pm

dwbessire - I'm glad you are getting such informative responses. It certainly is a lot to take in.

Just to mention, you say your friend does not think there are any generics for requip or mirapex.

Please check out ropinerole, the generic for requip.
http://en.wikipedia.org/wiki/Ropinirole

Betty/WV · Post by **Betty/WV** » Sun Jul 03, 2011 8:06 pm

Also, there is a generic for Mirapex (pramipexole).

BETTY/WV

dwbessire · Post by **dwbessire** » Sun Jul 03, 2011 11:08 pm

Again, thank you Polar Bear and Betty....for the very helpful information.

I am sharing everything I learn with my dear friend and she is very appreciative, too. We will begin planning out a strategy for next steps soon.

I will always be open to any information that anyone on the Board has to share as well as any suggestions to consider.

Thank you all!

Post by **badnights** » Sun Jul 03, 2011 11:50 pm

It sure is wierd the insurance won't pay for Mirapex/pramipexole or Requip/ropinirole, as those are the only FDA-approved drugs for treating RLS. Or were until very recently when an extended-release version of a gabapentin pro-drug was approved (Horizant). Neurontin/gabapentin does not do the same things as the dopamine agonists, and it's not efffective for many of us. I can't believe they'll pay for that and not for Requip or Mirapex. May they rot. Sorry.

I think you can ignore almost every "trick" besides the ones Jill mentions in her book; I haven't read it in a while but I think she covers all the useful ones (squats, heat, cold, distraction, etc). She calls herself the RLS Rebel because she refused to bow down to the monster and let it win.

Jill's recommendations are all aimed at enabling you to fall asleep. This is pointless if you have RLS bad enough that it wakes you up after you're asleep. I think she was not aware that that was possible when she wrote her book, because it doesn't happen to her.

And for supplements, check if she's deficient first but iron, D and Mg seem to be the ones most people have responded to. Only iron has any studies to back that up.

It can be overwhelming at first, but the books Betty suggested are super-good. Another one I like, tho it's hard to find things in it, is Chokroverty, 2010. 100 Questions and Answers About Restless Legs Syndrome.

Please don't get discouraged if your friend doesn't respond well to this attention at first. She has lived with her disease for many years. The only way she could have done that was to accept it as her fate. Perhaps she subconsciously cannot envision herself receiving or deserving help or getting better. Patience while you convince her that help is possible and deserved.

dwbessire · Post by **dwbessire** » Mon Jul 04, 2011 12:22 am

Thank you so much, Beth...you have my friend nailed pretty well. She has accepted that RLS is her fate and is coping with it reasonably well considering everything with the help of meds and ativan to sleep.

I intend to be very patient and gentle in urging her to seek relief. She woujld love to find more relief and, of course, be rid of RLS but she seems willing to settle for enough relief to allow her to sleep. I don't think she gets sufficient sleep by a long shot right now and that just makes the whole thing much worse as all of you already know.

It certainly won't help to use any kind of shotgun approach and try a whole variety of things at once...Even if there was some success, it would be difficult to know what was responsible.

I do intend to try to get to the bottom of the insurance problem with the meds. I think an appeal supported by one or more physicians who say exactly what you are saying about mirapex and requip or their generics would surely change their rejections.

She does have Medicare D coverage. I can assist her wtih the appeal efforts.

She already plans to see her own doctor and a neurologist who has treated RLS patients. Thanks to all I have learned already, she will be armed with a number of questions and requests, including measurement of her serum ferritin level, Vitamin D and Magnesium level.

I did see the 100 questions book available at Amazon and will likely go back and purchase it, too. Thanks for that information.

I will continue to read, study and learn from all of you and all of the material I am accumulating....I feel certain it will pay off for my friend!!

dwbessire

dwbessire · Post by **dwbessire** » Mon Jul 04, 2011 11:46 pm

I see a product advertised called LegMedic which seems to have some knd of vapor discs that are activated by body heat. It is placed under the sheets where it will be directly under the lovwer legs. Naturally, there are testimonials as to its effectiveness and it claims to be "doctor approved".

Does anyone have any experience or information regarding LegMedic or other similar vapor type products?

Post by **ViewsAskew** » Tue Jul 05, 2011 12:02 am

I can safely say that I've never seen more than a person or two here and there have success with any of these products. There are few things that seem to work more universally - see below.

To reduce symptoms
-If deficient, vitamin/mineral supplementation
-regular exercise, light to moderate
-control stockings (medical grade - see the posts in the non-pharma section) - some people have used Ace bandages, but must be careful not too tight
-medication - the right combo is crucial
-if you have one, control the secondary condition that's causing it (celiac, pregnancy, diabetes, etc.)
-changes in diet - this is more rare, but some people have success by going on sugar free or gluten free diets or cutting out things that worsen it such as caffeine, ice cream, alcohol, etc.

To stop an attack
-use leg exercises when we get an attack - can alleviate for quite awhile
-use attending/mental stimulation
-warm bath (though some prefer cold)
-heating pad
-massage - can also work to control it, but can be hard to get someone to do it for you every time it's needed

dwbessire · Post by **dwbessire** » Tue Jul 05, 2011 3:34 pm

Thank you, Ann...your reply is very helpful. My friend has heard of a number of different things and tried some over the years with little success. From what I can tell, her RLS may not be as chronic as some others but it is bad when it does occur. Fortunately, for her, she has nights when she does not experience any of the symptoms. Lately, she seems to have been in a pattern of only one leg at a time. She seems to have some very bad nights mixed in with some good ones.

Some of the folks I have heard from and read about seem to have the attacks virtually every night or maybe I am misunderstanding what they are saying. I suspect there may be a large variety of patterns or episodes in individuals.

I am anxious to receive and read the books I have ordered and in the meantime am spending time reading through the various threads of this discussion forum.

I will cintinue to appreciate any information, comments or other ideas.

dwbessire

Post by **ViewsAskew** » Tue Jul 05, 2011 10:42 pm

dw - the variability is wide. Some of us have it a few times a year. My husband has it rarely - sometimes monthly, but often many months in between.

I have it every day, most of the day. As long as I'm working and keeping interested in something, I'm usually OK and only need meds in the evening and at night.

Others have it all day every day and need to take medication during the day, too.

Post by **Polar Bear** » Wed Jul 06, 2011 12:19 am

dw - yes I have symptoms 24/7 and take medication all of the time.

Post by **badnights** » Wed Jul 06, 2011 1:02 am

My daytime symptoms are present but bearable, probably dulled by the lingering effects of the extended-release hydromorphone I take every eveningt.

Betty/WV · Post by **Betty/WV** » Wed Jul 06, 2011 1:27 am

At one time my symptoms were every night. I always said "I went to sleep when the birds sang". Which was about 5 or 5:30 am. And I would sleep 3 or so hours. It was pure torture. My life was "hell".
...Also riding in the car for any distance was terrible.

Now I take Mirapex and it helps the WED/RLS but I have insomnia and get very little sleep and I am exhausted all the time.....after my last sleep study I think the doctor is going to put me on some kind of sleeping pill along with the Mirapex. Then it is experimenting to see what works.

Sometimes I will have a break through and the WED/RLS will act up. When that happens I take a vicodin. But the doctors don't like to give it to you, even though opiates are recognized as a treat ment for WED/RLS.

BETTY/WV