Hi, I’m new to the group.

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.
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s3v3n11
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Joined: Fri Feb 22, 2019 6:38 am

Hi, I’m new to the group.

Postby s3v3n11 » Sat Feb 23, 2019 2:26 am

I have been struggling with RLS for may years. I am currently talking pramipexole 2 m and on Neupro patch 3 m. It is getting to the point that these meds don’t help as much and I am having more problems with RLS than ever. I think I may be experiencing augmentation but can’t stop my meds. I have also tried gabapentin and Ropinirole.Does anyone have experience with Horizant?
Thank you!
Cat (s3v3n11)

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

Re: Hi, I’m new to the group.

Postby stjohnh » Sat Feb 23, 2019 4:24 am

Hi s3v3n11. Welcome to the RLS group. You will find many helpful, understanding people here. Folks who "get it," when most of our friends and family just can't understand how many problems this disease causes.

You are almost certainly augmenting, as you are on very high doses of pramipexole plus moderately high doses of Neupro, both are dopamine agonists. Lots of people have tried Horizant, but for most it acts just like a very expensive version of gabapentin, to which it is related. The maximum currently recommended dose of pramipexole is 0.25mg, so 2 mg is very high.

Take a peek at the Augmentation topics for more info. In a nutshell, you will need to stop the pramipexole and Neupro, but don't do this abruptly, consult your doc. This will be a VERY difficult time while you are getting off the meds, much worse than anything you have previously experienced. The good news is the very bad portion is usually only a few days (but torture) and when you have been off the pramipexole and Neupro for a couple of weeks you will be much better. If your doctor will give you an opioid for the time you are withdrawing from the pramipexole and Neupro it will be easier, though still very difficult.
Blessings,
Holland

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s3v3n11
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Joined: Fri Feb 22, 2019 6:38 am

Re: Hi, I’m new to the group.

Postby s3v3n11 » Sat Feb 23, 2019 7:33 am

Thank you Holland for the valuable information! The withdrawal does sound difficult but I think I do need to discuss it with my doctor.

Thank you for your kind welcome.
Cat (s3v3n711)
Thank you!
Cat (s3v3n11)

Polar Bear
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Location: N. Ireland

Re: Hi, I’m new to the group.

Postby Polar Bear » Sat Feb 23, 2019 2:51 pm

You will need help to get through the Withdrawal. I am weaning off ropinerole at the minute which is a similar drug to pramipexole.

How well versed do you think your doctor is with regard to augmentation and is he receptive to any information you may provide.If you go to any post of 'bad nights' there is a link in the signature which will take you to information about augmentation. There will also be information on the RLS Foundation site although for some of it you may need to be a paid up member.

This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as pramipezole or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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s3v3n11
Posts: 5
Joined: Fri Feb 22, 2019 6:38 am

Re: Hi, I’m new to the group.

Postby s3v3n11 » Sat Feb 23, 2019 8:01 pm

Hi Polar Bear, i am learning so much here and thank you for your helpful insight. I had no idea so many people dealt with the same issues.
My doctor hasn’t mentioned augmentation but I think would be helpful if i talk to him. I go to a neurologist who was referred by my pcp.

I will check about theferritin lever check. I have regular bloodwork done. They always check my regular iron and B12 because I have anemia and have to take injections for B12. I will also look for the book you mentioned,
Thank you!
Cat (s3v3n11)

Rustsmith
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Location: Pueblo, Colorado

Re: Hi, I’m new to the group.

Postby Rustsmith » Sat Feb 23, 2019 11:30 pm

Cat, you need to keep in mind that many doctors, including neurologists are not familiar with augmentation because it is a condition that is only caused by dopamine agonist drugs for those of us with RLS. When you get the book, read through it and tab or highlight a couple of relevant sections. If your doctor looks confused or doesn't seem to know what you are talking about, show him/her the sections that you marked. If that doesn't work, you will need to find a doctor who does understand.
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.

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s3v3n11
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Joined: Fri Feb 22, 2019 6:38 am

Re: Hi, I’m new to the group.

Postby s3v3n11 » Sun Feb 24, 2019 3:46 am

Hi Rustsmith!Thank you for this information. I wasn’t familiar with augmentation until coming to the forum. So much helpful info here. I’m still trying to make my way around to learn more. Your information is greatly appreciated!
Thank you!
Cat (s3v3n11)

ViewsAskew
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Location: Los Angeles

Re: Hi, I’m new to the group.

Postby ViewsAskew » Mon Feb 25, 2019 8:07 am

Welcome, Cat. I would guess that Steve's suggestion may be the best way to go. Doctors often know less than we do, unfortunately, about this. I went to several doctors until I could find one who would do the work needed to learn about it and then follow an approach that worked.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

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s3v3n11
Posts: 5
Joined: Fri Feb 22, 2019 6:38 am

Re: Hi, I’m new to the group.

Postby s3v3n11 » Mon Feb 25, 2019 12:19 pm

Hi Ann,
Thank you for the warm welcome and information. It is very helpful to hear your experiences and to be able to learn more from them.
Thank you!
Cat (s3v3n11)


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