Good luck for many years. Now in the pits.

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.
shirleysguy
Posts: 5
Joined: Sat Sep 10, 2016 2:45 pm

Good luck for many years. Now in the pits.

Postby shirleysguy » Sat Sep 10, 2016 7:55 pm

I'm 71 and was well controlled for many years on Mirapex 0.5 once a day at noon. About six weeks ago I started waking up with "spasms" at night. My doctor suggested I split the dose, taking 0.25 noon and early evening. Didn't really work, so I asked if I should consider switching to something else. He prescribed 0.5 of Ropinirole twice daily. Said to stay with that for 2 weeks, then go to 1.5 if necessary, then possibly to 2.0 after another 2 weeks. I had very little sleep for 3 nights. On the fourth night I took another 0.5 and symptoms disappeared. Stayed with the 1.5 for a few days and then had a bad night and took another 0.5. Saw the doctor and he said it was OK to add if going thru that much discomfort and said I could increase as needed. Eventually worked up to 4.0 per day in another week, which I can see from this board is probably too much -- back to sleepless nights. Augmentation? Doctor is on vacation and not sure what to do. Plan to cut back for sure. Will certainly study this site -- since I'm not sleeping I'll have plenty of time for study!

stjohnh
Posts: 275
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Good luck for many years. Now in the pits.

Postby stjohnh » Sat Sep 10, 2016 8:14 pm

Sounds like augmentation. You will have to get off the ropinirole with the help of your doctor. You will probably need an opioid like a Vicodin or oxycodone or Percocet to help you get over this. If you can take Narcotics and have a few left over from the past you can use that to add on to what you're currently taking until your doctor gets back. When you see your doctor be sure you have had a ferritin test and that the number is over 75. Be prepared for considerable misery during the time you are getting off the requip (ropinirole). Take the white paper on augmentation treatment with you to give to your doctor when you go.
Blessings,
Holland

Polar Bear
Moderator
Posts: 6618
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Good luck for many years. Now in the pits.

Postby Polar Bear » Sat Sep 10, 2016 8:36 pm

Officially 4mg dosage of ropinerole daily was considered the maximum but now several experts in the disease feel that this is too much and will encourage augmentation. These experts now would recommend a daily max of 1mg.
However, this information is not likely to have filtered down to regular GPs.

As advised by stjohnh, get your ferritin serum tested and make sure you ask for the number. Non sufferers may be ok on the considered normal of 20 but those who suffer with RLS are best up around 75/100.

It is 6 weeks since you started your dosage increase of DA medications and these increases occurred very quickly one after the other.
Agreed that you should take some information on Augmentation with you to your doctor, for his guidance.
I hope he is willing to prescribe what is necessary to help you through the withdrawal that you will face.
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

ViewsAskew
Moderator
Posts: 14529
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Good luck for many years. Now in the pits.

Postby ViewsAskew » Sat Sep 10, 2016 11:58 pm

Great ideas so far. And, great suggestion by yourself to study here! Many of us find that we have to be very educated advocates as our doctors are often 10-15 years behind the cutting edge treatments.

There are differing schools of thought regarding augmentation. Some docs DO think you should keep increasing the dose when augmentation is mild. Other think that once you start increasing, you are just in for more problems, so you might as well stop now. Then, they don't all agree on how to handle it. Some say to use an opioid, as stjohnh wrote about. Others feel that you should tough it out and get all the drugs out of your system as quickly as possible. We've had members do each - the beauty of toughing it out (takes at least 5 days an upward to 20 to get through the worst) is that you can do it on your own if you feel you have no viable help from a doctor.

You're in a great place to learn more, hang out with the rest of us miserable sleepless wretches and commiserate :-).
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.

badnights
Moderator
Posts: 4296
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Good luck for many years. Now in the pits.

Postby badnights » Sun Sep 11, 2016 6:57 am

You might first want to determine if you're actually augmenting. As compared to before you started the ropinirole, are your symptoms:
- starting earlier in the day (eg. 4 Pm instead of 6 pm)
- starting sooner after you sit or lie down
- spreading to other body parts (eg. arms)
- more intense
- starting up again sooner (medication wears off faster)?
If the first one and any one of the others is true, you are augmenting.

Definitely get your ferritin checked; many of us are below the recommended 75, It wouldn't hurt to be over 100.

Whether or not you're augmenting, if I were in your shoes - having augmented and knowing what it is like - I would try to cut back to 3 mg while you;re figuring out what to do. And some other things you can do while you're waiting to see your doc or get lab results: eat iron-rich foods at the same time as foods rich in vitamin C (or pills of C). Consider taking vitamin D supplements - my doctor seems to think as much as 4000 IU daily can be taken without getting blood tests to check for safety. D and iron are the only two nutrients that have definitely been linked to RLS/WED severity. It can't hurt to take magnesium as well; it's essential for good health and like D, apparently most of us are deficient in it.

Don;t aim for total symptom relief but do aim to get a reasonable amount of sleep. You can definitely get this under control.

One thing seems clear - if your doctor said to increase as needed, he isn't aware of the phenomenon of augmentation, which is almost unique to RLS/WED and not something he wouldn't necessarily know about unless he's had an augmenting WED/RLS patient before. Your best course of action might be to get a copy of the Foundations brochure on augmentation, or better still, get the WED/RLS Medical Bulletin for healthcare providers, print a copy, and bring it with you to your next appointmemt. Read it yourself before you go, and highlight the parts that are relevant to your situation (the doctor won't have time to read it all). The section on treating refractory RLS/WED, which includes augmentation, begins on page 6. Hgihlight the numbered points 1 and 3, if you agree that they seem most pertinent to your situation. And whatever else resonates with you. Ferritin is discussed on page 11. Give the printout to him to keep; make it as easy for him to learn this stuff as possible.

I wish you luck! Let us know what happens. And please ask questions , sometimes we raise more questions than we answer. And sometimes I'm too tired to write clearly , I think I'm making sense but it's only in my head :)
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

shirleysguy
Posts: 5
Joined: Sat Sep 10, 2016 2:45 pm

Re: Good luck for many years. Now in the pits.

Postby shirleysguy » Mon Sep 12, 2016 5:59 pm

I'm so appreciative of the help offered. It's awesome that folks here are willing to give your time to respond so quickly and thoughtfully.

When I first posted I was up to 4mg of Ropinirole and took it all at once that day. Had a horrible night as described above. It helped to spread the 4mg over three doses and I slept that night. Last night 4 hours or so. I'm cutting down as recommended in the augmentation paper as I seem to meet the criteria for augmentation. Trying to integrate as much of the non-pharm recommendations as I can.

Been taking Ropinirole for just under a month. Can augmentation happen that quickly? The above paper says it generally takes six months to develop. If I understand you aright, you think it's possible to get augmentation from upping the dose as quickly as i did.

When I went off Mirapex (0.5mg once daily) and started Ropinirole (0.5mg twice a day) i had some bad nights immediately, Wondering what was going on then? Withdrawal from Mirapex? My pharmacist doubts that, his thinking being that they belong to the same class of drugs. Seems like it was too soon for augmentaion to set in then. Not enough Ropinirole at that point?

As I've said I had great luck for years with Mirapex for years,taking one 0.5mg dose at noon because symptoms would start mid-afternoon without it. With that one dose there would be no problems at night. Went to the doctor because began to have some symptoms at night. That problem does not seem to meet the criteria for augmentation. Wondering now if Benadryl or artificial sweeteners or something else was causing the issue and not the Mirapex. Should have results of iron labs soon.

stjohnh
Posts: 275
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Good luck for many years. Now in the pits.

Postby stjohnh » Mon Sep 12, 2016 6:57 pm

For sure benadryl will make symptoms worse. Some think artificial sweeteners (especially aspartame) can make it worse, others think not. You were on a fairly high dose of mirapex and switching to ropinirole usually doesn't help if you were augmenting on mirapex. Mirapex, ropinirole and Neupro are all dopamine agonists and all can cause augmentation. Lower doses of dopamine agonists are less likely to cause augmentation.
Blessings,
Holland

Rustsmith
Moderator
Posts: 2325
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Good luck for many years. Now in the pits.

Postby Rustsmith » Mon Sep 12, 2016 8:44 pm

shirleysguy, the dosage for Mirapex and ropinirole are not one-to-one. As an example, the starting dose for Mirapex is 0.125mg and ropinirole is 0.25mg. Therefore, when you switched from Mirapex to ropinirole, although you effectively were taking about the same dose of dopamine, the fact that you split the ropinirole dose in half by taking it twice a day probably meant that you only had about half as much dopamine in your system at night. That would explain the first few bad nights until your body got used to the lower dopamine medication levels.

As for your question about whether you can augment in less than six months, the answer is yes. Especially since you had already probably augmented on Mirapex. Although unusual, we have a few members who have augmented on these drugs in a matter of days. In fact, Carbidopa (another dopamine agonist) is notorious for causing augmentation very quickly, but works great for some people as a treatment for RLS breakthroughs because it works so quickly.

As for benadryl, it has a proven history of triggering RLS in many people. Other first generation antihistamines, such as chlortrimeton, are also known to produce problems. However, the second antihistamines, such as Zyrtec, Claritin and Allegra, are not supposed to cause problems for most.
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.

ViewsAskew
Moderator
Posts: 14529
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Good luck for many years. Now in the pits.

Postby ViewsAskew » Mon Sep 12, 2016 8:51 pm

As Steve mentioned (and maybe others - sorry if I missed them!), some of us augment very fast. Few of us, thankfully. I am one who did. But, maybe more relevant, and also mentioned, is that once you augment and especially if that hasn't been resolved, the next drug almost always causes issues even more quickly.

I think the additional symptoms at night an pramipexole (brand name Mirapex in the US) IS very likely augmentation. Any time symptoms are worse, stronger, longer, earlier, etc, and especially suddenly, we usually figure that it's initial augmentation. But, I am not a doctor!
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.

badnights
Moderator
Posts: 4296
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Good luck for many years. Now in the pits.

Postby badnights » Tue Sep 13, 2016 8:02 am

MAybe you weren't augmenting on pramilpexole -- how did the Benadryl tie in to your increased symptoms? Benadryl is, I Think, the single biggest trigger of RLS/WED attacks of any substance.

Anyway, it's a moot point now, since you seem to be augmenting on the ropinirole. Like Ann, I augmented within days. The third day, probably, but it took me a week or two to realize.

When I went off Mirapex (0.5mg once daily) and started Ropinirole (0.5mg twice a day) i had some bad nights immediately, Wondering what was going on then? Withdrawal from Mirapex?
I can't recall hearing of anyone saying they were withdrawing while taking a different DA. However, I wonder if it might be possible, because those two DAs affect the D2 and D4 dopamine receptors slightly differently (though the main effect of both of them is on the D3 receptor). I read something about this once, but I can't re-locate it.

I think your efforts to do as much non-pharma stuff as possible are an excellent step. It's important to lower the offending medication as much as possible whileyou wait to see your doctor, and then to stop the ropinirole and stablilize without it as soon as possbile after you see him/her.
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

shirleysguy
Posts: 5
Joined: Sat Sep 10, 2016 2:45 pm

Re: Good luck for many years. Now in the pits.

Postby shirleysguy » Fri Sep 16, 2016 5:18 am

Had iron checked. 60, but PA said other numbers indicated plenty of iron in the blood, so wasn't comfortable supplementing. Brought medical bulletin and augmentation handout. PA not familiar with augmentation, but impressed with info because you weren't pushing drugs and ideas seemed to make sense to her. I'm down titrating as suggested dropping 0.5 mg every three days. Down to 2.5. I'm on vacation on Cape Cod and reluctant to go all the way to nothing til I get back home in two weeks. At some point would like to try going back on Mirapex. Since I did well on it for many years, wondering if Benadryl was the culprit.

My pharmacist said no one he knew is being successfully treated. So I suppose no docs here know much about RLS. Maybe folks are augmenting and docs aren't responding appropriately. Makes me want to do something about that once I get a handle on mine and educate myself.

ViewsAskew
Moderator
Posts: 14529
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Good luck for many years. Now in the pits.

Postby ViewsAskew » Fri Sep 16, 2016 6:49 am

Your serum ferritin was 60? That is not high for anyone with RLS/WED, as you know - but many docs and PAs are not aware. You can try iron on your own. It may not help...but it could.

Benadryl certainly could have been the problem! At least you won't do that again.

Have fun with the rest of your vacation.
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.

badnights
Moderator
Posts: 4296
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Good luck for many years. Now in the pits.

Postby badnights » Fri Sep 16, 2016 7:37 am

Makes me want to do something about that once I get a handle on mine
a good idea! You could become a support group leader, start a support group in your area. Part of that role would be raising awareness of WED/RLS in local media.
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

Rlstader
Posts: 10
Joined: Fri May 27, 2016 3:18 am

Re: Good luck for many years. Now in the pits.

Postby Rlstader » Sat Sep 17, 2016 9:33 am

Hi Shirleysguy, As you've seen many of have a little bit different reactions to our drugs. I will tell you mine. in about 2003 my Rls was bad enough to go to the doctor. She put me on ropinerol and I augmented in three weeks. I didn't know it was augmentation at that time, I just thought the drug did not work. she then put me on Mirapex and it worked great for almost 9 or 10 years. I was on .25 3 times a day and then at .5 three times a day. Then it started to get worse...my original neurologist moved so I went to a new doctor.

The new doctor said you are on a very low dose of Mirapex. You can keep increasing it all the way up to 1 mg three times/day. So I did and I was on the 3 mg three times a day for about two years. It was less and less effective. Then I had a knee replacement in January 2016. My Rls went out of control. Getting off the Mirapex was very hard. I never want to do anything like that again.....

Now I am on 10 mg OxyContin extended release twice a day and I still have break throughs at night (I am writing this at three in the morning while I wait for the extra Percocet to kick in.) I am much better then I was but I feel guilty every time I take a pill and I have periods of horrible anxiety everyday. Sometimes they last for 10 minutes and sometimes 3 hours.

It's a crazy disease and we are all different my strongest recommendation is to try to find a doctor who understands at least a little and then is willing to educate themselves. This site and the amazing, generous people on it will help a lot. Take advantage of all the literature and videos.

Welcome to our club and good luck. :)

Polar Bear
Moderator
Posts: 6618
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Good luck for many years. Now in the pits.

Postby Polar Bear » Sat Sep 17, 2016 3:54 pm

Rlstader - 3mg of Mirapex x 3 times daily is a madly hefty dose of Mirapex and well done for getting off it.

Your recommendation to get a doctor who understands even a little is a start, a big bonus is if the doctor even knowing just a little is willing to learn along with the patient. I would wish this for everyone, it's how I manage. Me, my GP, and my RLS literature and book.
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


Return to “Just Joined?”

Who is online

Users browsing this forum: No registered users and 1 guest