Just joined

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.
Anitalb
Posts: 1
Joined: Mon Jan 01, 2018 2:49 am

Just joined

Postby Anitalb » Sun Apr 01, 2018 4:20 pm

I am relatively new to the site and am happy to see that there is a group I can join close to me. I have had RLS for over 37 years and not doing to bad with it. Taking Ropinorole 6mgs once a day, but it doesn’t last to the evening dose. I tried taking 4mgs in the morning, but had nasty side affects. I am now trying to make it through to the evening dose. Any suggestions would be greatly appreciated. I know that we can go to, I think, 8 msg. Sometimes I get pain with it and sometimes my arms jump. Depends on what I do during the day. Glad that there is a place to share all of this. Mine has been getting progressively worse and know it won’t get better.

Thanks,
Anita

stjohnh
Posts: 589
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Just joined

Postby stjohnh » Sun Apr 01, 2018 6:13 pm

Hi Anita, welcome to the RLS community. You will find lots of help, empathy, sympathy and warm support from other folks here. Unfortunately lots of people without RLS don't really get how devastating this illness can be, however you will find that folks here clearly understand.

For us to help you the most it would help to know what kind of symptoms that you have now, how the symptoms have changed over the last few months or year or so, and what dose of ropinirole you were on at an earlier time.

The dose of ropinirole you are on is fairly high and suggests the possibility that you may be experiencing augmentation. Augmentation is the phenomenon in which increasing the dose of the medication for RLS doesn't seem to help or helps only minimally, frequently accompanied by starting symptoms earlier in the day, moving to other parts of the body, or both, which is what sounds like your situation is.
Blessings,
Holland

Polar Bear
Moderator
Posts: 7259
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Just joined

Postby Polar Bear » Sun Apr 01, 2018 6:51 pm

Anita, have you ever had your ferritin serum level checked and if so, what is your level?
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. 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.

Also, this book is wonderful, it is easy to read and can be used for discussion purposes with your doctor, especially regarding the treatment of RLS and Augmentation. 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 and is around $30 but is well worth it.

8mg is definitely a high daily dose. I take 4mg ropinerole (also too high) daily broken into 5 separate doses. This is from the early days when 4mg was considered ok as a maximum daily dose. Nowadays the acceptable daily dose of ropinerole is considered to be around 1mg. Have you tried any other medication?
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

badnights
Moderator
Posts: 4956
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Just joined

Postby badnights » Fri Apr 06, 2018 8:08 pm

Hi and welcome anitalb

I don't need to repeat what the others have said, but I agree - your dose is too high for RLS/WED, new ideas are that ropinirole should be limited to 1 mg maximum daily. The contrary thing about it is that it eventually makes the disease worse, meaning your symptoms are more intense, spread to your arms, and start earlier in the day. As you increase the dose to try to cover the worsened symptoms, the higher dose just makes things even worse - and so it goes. You have to get off the ropinirole completely for things to settle down, and that is very hard because for a few days or a week, things get even worse; you may not get any sleep at all.

The good news is, life is so much better after you get off it. The WED/RLS retreats to something manageable. You finished your post with "I know it won't get any better" but it certainly can. It definitely will if you get off the ropinirole. Afterward, you will probably need something else to manage your symptoms (an alpha-2-delta ligand like Horizant, gabapentin, Lyrica or an opioid, or maybe a low dose of a dopamine agonist combined with an opioid or alpha-2-delta).

I am curious about when you're taking your 6mg dose - it's not clear if you;'re taking it in the evening or the morning.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

sleepdancer2
Posts: 192
Joined: Sun Jun 29, 2014 7:46 am

Re: Just joined

Postby sleepdancer2 » Mon Apr 09, 2018 6:46 am

Hi. Glad you found your way here. Some of the people here are so very informed on the options for treatment and generous in sharing. Agreeing with all those expressing concern over your dosage of medication. When people are on a low dose, stopping may not be a problem. But at your dose, I'd recommend stepping down at a cautious rate. I made the unfortunate choice years ago to stop abruptly from a dose no longer recommended for treatment of RLS. It caused me neurological problems, some of which appears permanent. If perchance you are experiencing augmentation, it likely means your symptoms are exaggerated and worse than your baseline symptoms would be off the med. I was able to get off the same med and found out out my disorder had not progressed as the doctors were thinking. The worsening symptoms were a side effect of the med. Once I reached my baseline symptoms, I found they were manageable by using a TENS Unit. Seeing improvement is not without hope. Hope you find what works for you.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

ViewsAskew
Moderator
Posts: 15346
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Just joined

Postby ViewsAskew » Mon Apr 09, 2018 8:43 am

Great advice already provided. Just wanted to say I am one of those who augmented, along with most of the others who replied! We all found ways to deal with it, and we didn't all do it in the same way. What we all did, eventually, was to stop the dopamine agonist - ropinerole in your case - and use something else.

It is often unpleasant. But in the end, you will likely be extremely happy you did it.

Please ask us if you have any questions. Most of us have lots of personal experience and can at least tell you what we did, guide you to other resources, as well as commiserate and be here in the middle of the night if it gets tough.
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.

barbeegee
Posts: 35
Joined: Thu Apr 26, 2018 1:29 am

Re: Just joined

Postby barbeegee » Thu Apr 26, 2018 10:10 pm

I'm 74 and have had RLS all my life but it recently became unbearable. My family Doctor gave me Xanax for anxiety and I noticed it helped me to sleep through the RLS, even though it did show up on my sleep study. So then she allowed me 1/2 of the lowest mil of Xanax to help me sleep. It worked for 15 yrs. Now she's retired and I found a new doctor. She immediately refused me the small Xanax and put me on each of the strong meds whose names I've forgotten, but each one gave me 12 hrs of the worse nausea. So I can't take them, she's taken away my Xanax so...I'm on my own to try and beat this. It strikes me strange that she'd take me off the milder med to go on the strong drugs. I'm happy to be here, and hope we can both help each other. Right now I'm taking a glass of tonic water a day for muscle cramps and it seems to keep the RLS at a low and dealable level as long as I don't take aspirin, allergy meds or any over the counter meds because they spike the RLS to unbearable levels.

Rustsmith
Moderator
Posts: 3439
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Just joined

Postby Rustsmith » Thu Apr 26, 2018 10:32 pm

barbeegee, welcome to the discussion board. For your allergy meds (and over the counter sleep aids), avoid anything that has Benedryl or Chlortrimeton in it. These meds are well documented as RLS triggers. If you need an allergy med, Allegra, Claritin and Zyrtec (and their generics) are usually well tolerated because they don't cross from the blood into the brain like Benedryl.

As for your Xanax, this is a medication that is well documented to help those with moderate RLS, especially if the primary issue is sleep related. Do you have some other health issue that your doctor could have been concerned with?

Finally, could you try to find the names of those medications that your doctor provided but that caused the nausea? There are a number of RLS meds that can cause nausea, especially during the first few days. If we knew more, we might be able to offer some suggestions or alternatives to discuss with your new doctor.
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.

barbeegee
Posts: 35
Joined: Thu Apr 26, 2018 1:29 am

Re: Just joined

Postby barbeegee » Wed May 02, 2018 5:09 pm

I'll try to get that info. My doctor said that people over 65 have a tendency to falls. I'm a healthy 74--I walk 2 miles a day and that tiny dose at night has never made me feel unsteady. I don't like this doctor much. I'll get the information about the pills that made me sick.

barbeegee
Posts: 35
Joined: Thu Apr 26, 2018 1:29 am

Re: Just joined

Postby barbeegee » Wed May 02, 2018 5:19 pm

ropinirole

Requip

Mirapex

Gabapentin

Tramadol

I can't tolerate any of the statin drugs she prescribed either.,..all give me RLS x 10

legsbestill
Posts: 482
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Just joined

Postby legsbestill » Wed May 02, 2018 9:01 pm

I am outraged, barbeegee. How much more likely are you (or indeed anyone of any age) to fall if profoundly sleep deprived? I don't like your doctor either. What a nonsensical, condescending, ridiculous thing to say to you. Moreover, he/she has put you on a range of dopamine agonist drugs that are not now considered the optimal first treatment for rls. H/she is the uninformed individual here and not just about the true purport of the hyppocratic oath. I hope you manage to find an acceptable solution.

Yankiwi
Posts: 356
Joined: Wed Sep 10, 2014 7:20 am
Location: West Coast, South Island, New Zealand

Re: Just joined

Postby Yankiwi » Thu May 03, 2018 12:06 am

Don't you hate it when age of a healthy person is thrown out as cause? I've had recurring chest infections this year (never before) and the radiologist on his report said something about how it could take a while to resolve in someone of this age (68)!. I'm not old and haven't had any disease except colds (and not many) in 51 years when I had mono/glandular fever in high school.

Rustsmith
Moderator
Posts: 3439
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Just joined

Postby Rustsmith » Thu May 03, 2018 1:04 am

If it is help, this is the doings of Medicare. I find it hilarious that my doctors always has to ask about falls even though they know that I am a competitive runner. Each time they apologize and explain that Medicare requires them ask anyone over 65, even athletes :lol:
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.

legsbestill
Posts: 482
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Just joined

Postby legsbestill » Thu May 03, 2018 6:57 am

Yes, but it seems he didn’t ask as a box-ticking exercise but gave it as a reason for withdrawing vital medication.

barbeegee
Posts: 35
Joined: Thu Apr 26, 2018 1:29 am

Re: Just joined

Postby barbeegee » Thu May 03, 2018 1:53 pm

Rustsmith: you seem to know more than my doctors.... what should I take for a headache? Acetaminophen causes RLS. Is there anything else I can take?

Thank you all for the messages. It feels so good to know you aren't alone.


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