Hello! I'm new here!

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
SuzeLeslie
Posts: 1
Joined: Wed Aug 23, 2017 6:59 am

Hello! I'm new here!

Postby SuzeLeslie » Wed Aug 23, 2017 11:19 am

I'm 46 and have been having RLS for the past few months and it's pretty severe - happens in the daytime as well as night. I am taking Mirapex at .125 and have been occasionally overdosing it for relief and sleep. 5 pills makes it manageable (I can sit without having to walk all night and 10 pills stops the RLS completely, allowing me to sleep. I have read a bit about augmentation on these boards, so I hope I don't overdose anymore in the future. I keep asking God for healing but I have a feeling that the healing will have to take place in a less than miraculous way.

I take vitamins D, C, B complex, Magnesium, Calcium and a one a day multivitamin.

I welcome any and every kind of help out there.

Thanks!

Rustsmith
Moderator
Posts: 2998
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Hello! I'm new here!

Postby Rustsmith » Wed Aug 23, 2017 11:58 am

Welcome SuzeLeslie. Glad you found us but it is unfortunate that you need us. :)

If you are taking 5 Mirapex pills that are each 0.125mg, then you are definitely taking too much. The normal maximum dose of Mirapex for RLS is either 0.125mg or 0.25mg, depending upon which RLS expert you listen to.

Therefore, if you are using more than one or two 0.125mg pills, then you need to have a talk with your doctor about how you are augmented in Mirapex and what you can do to get off of it. Since many doctors are not familiar with augmentation, you should read as much as you can and take a couple of documents along with you for that appointment. You can find things to use either in the links in my signature or in the links in badnight's signature.

Also, if your doctor is not one of the well informed, then you should also think about getting a copy of the book "Clinical Management of Restless Legs Syndrome" by Henning and others. You can find it on Amazon for about $30. Make sure that you get the second edition. It was written for doctors but is understandable by those of us who do not have medical training.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
Posts: 496
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Hello! I'm new here!

Postby stjohnh » Wed Aug 23, 2017 1:53 pm

SuzeLeslie wrote: I keep asking God for healing but I have a feeling that the healing will have to take place in a less than miraculous way.


SuzeLeslie,
Welcome to the RLS Community. You will find lots of help and support here. I would take seriously Steve's comments, he is very well informed.

Your comment about God suggests that your faith is fairly prominent in your life. I have had RLS for many years and have had many ups and downs, some of the downs have been very severe and it's only through my faith in Jesus Christ that I have been able to remain reasonably upbeat about this life.
Blessings,
Holland

badnights
Moderator
Posts: 4803
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Hello! I'm new here!

Postby badnights » Thu Aug 24, 2017 6:35 am

Hi SuzieLeslie, and welcome. Keep praying for the miracle of healing! And meantime, also I would like you to prepare yourself to educate your doctor without insulting him - or to find a new one, if the current one is not receptive to learning about this disease and about augmentation.

You need to get an iron panel done, and the most important thing to get checked is ferritin, which you may have to ask for specifically. If your ferritin numbers are below 100, you would probably benefit from oral iron therapy - (or even IV iron). Many doctors don't know this, and believe that a ferritin level of 20 or more is good enough for everyone. For people with WED, we tend to shed iron, so need to keep our stores relatively high. This directly with symptom severity - less iron, more symptoms. It also correlates with risk of augmentation on a DA - lower ferritin, higher risk. Other things that increase risk of augmentation are dose of the DA - yours is way up there - and duration of treatment.

There are some links in my signature line below this post that would be useful to print out, read, and bring to your doctor. The best would be the RLS Foundations' Medical Bulletin, the 2012 paper by Dr. Buchfuhrer, and the extract from the book Steve mentioned. Make sure you highlight the parts that mention recommended ferritin numbers in the Bulletin, and maximum recommended doses in the 2012 paper.

That your doctor has allowed you to go that high suggests he doesn't know about augmentation. Many don't, since it's a phenomenon unique to the RLS/WED disease.

I want to tell you more, but I have already taken my sleeping med (I need that too, in addition to the medication I take for movements), so my brain is beginning to leak out of my head. I hope our comments so far have been a good start for you.
Oh and there's also a Topic called A Good Place to STart in this Forum, it's a Sticky Topic so it's always near the top of the list. It might be - well, a good place to start !
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


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