Driving me crazy

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WBruce
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Driving me crazy

Postby WBruce » Sun Feb 22, 2015 12:50 pm

I am a retired orthopedic surgeon self treating for about 10 years. I started with ropinarole and later moved to pramapexole. I have found the pramapexole tends to work through the day much better than the other. Through the years, I have had to increase my dosage and now take 1.25 mg. pramapexol and 1 mg ropinarole at 8:00 PM each night. I am worried that I am taking too much medication as it leaves me hung over in the morning and very fatigued all day. However anything less doesn't work. I have tried gabapentene( made me tired but didn't control my symptoms). I used to get relief with Tylenol with codeine but Vicodin does nothing for me now. I do not smoke and limit alcohol to a beer a day. I exercise regularly but find if I exercise too much that my symptoms are not controllable with the above dose.
I know about augmentation, but the idea of going cold turkey for 10 days sounds like a recipe for suicide. I am worried and concerned. I tried to get an appt. with a neurologist but he wouldn't take me without a referral from a primary care Dr.
Anyway I am very open to suggestions.

WBruce
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Re: Driving me crazy

Postby WBruce » Sun Feb 22, 2015 1:21 pm

My serum frerritin runs about 50 and I have been taking an iron supplement and vitamin C daily for about 6 months. I have not rechecked my ferritin since starting the iron supplement.

Rustsmith
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Re: Driving me crazy

Postby Rustsmith » Sun Feb 22, 2015 4:30 pm

WBruce, the first suggestion is that you should get a copy of "Clinical Management of Restless Legs Syndrome" by Lee, Buchfuhrer, Allen and Hening. It is available from Amazon and costs about $25. There are two editions and you want the 2nd edition published in 2013.

The current thinking for the use of pramipexole for WED/RLS is that 0.25mg should be the maximum dose. Yes, higher doses are allowed by the FDA, but these approvals were for Parkinsons and not WED. So the current recommendations are that if more than 0.25mg is required, then you are quite probably into augmentation.

As for seeing a specialist, getting access to one is often a challenge that is further complicated by finding one who actually knows how to treat WED. Many of us went through quite a few doctors before finding one who knew what was going on. Some of us have "fired" doctors and some of us were "fired" by our doctor. Also, finding a doctor who truly understands augmentation is even more difficult. Several members of this discussion group who had augmented on dopamine products still travel cross country in order to see one of the recognized experts, others of us are fortunate to live near one. If you are going to try to get off of pramipexole, it would definitely be a good idea to see one of these experts who experience with helping patients switch from pramipexole to another form of treatment. If you let us know the region where you live, maybe someone can provide a suggestion that is close to your home.

There are also a couple of us here who were switched from pramipexole to Neupro when we first started to augment. Neupro is a new extended release dopamine agonist that is expected to cause fewer augmentation problems. The catch here is that I have not seen anyone who made the switch after getting to the dose of pramipexole you are using.

Lastly, if you WED problems are primarily of the urge to move sort, then the delta-2-alpha drugs like gabapentin, Lyrica and Horizant might not be as effective for you as for others. The research tends to indicate that there may be two issues with WED, the urge-to-move problem that is treated with a dopamine product and issues of insomnia and sometimes pain that respond to the alpha-2-deltas.
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.

Polar Bear
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Re: Driving me crazy

Postby Polar Bear » Sun Feb 22, 2015 4:54 pm

Through the years, I have had to increase my dosage and now take 1.25 mg. pramapexol and 1 mg ropinarole at 8:00 PM each night

As Rustsmith has mentioned .25mg is now considered the max daily dose to try and avoid augmentation. So you are well way above what is recommended.
Also - If I am reading your post correctly you are also taking 1mg ropinerole - as well as the pramipexole. That's a lot of DAs.
(I admit that my DA dosage is also way above the now considered best for max - I started when 4mg ropinerole was considered ok).

It is also deemed best that your ferritin should be up around 100 before using a DA for treatment.

Regarding your opinion of going cold turkey for 10 days ---- it is very possible that it would take longer than 10 days for the withdrawal to happen and for you to get to what could be your 'normal un-augmented WED symptom level'.
Support of a doctor with WED experience is really needed to get off the DA medication if augmentation is involved and if it was possible for you to see one of the 'experts' please think about it.

And yes..... please please get the book mentioned up-post. An excellent investment.
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

WBruce
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Re: Driving me crazy

Postby WBruce » Sun Feb 22, 2015 10:12 pm

I am on Marco Island Florida which is near Naples. Is there someone near me who I can see?

jul2873
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Re: Driving me crazy

Postby jul2873 » Mon Feb 23, 2015 2:06 am

I just made an appointment with the Johns Hopkins center, in Baltimore, for sleep disorders. They have a large WED research component and Dr. Early is the main doctor there. I did not need a referral for the appointment (I have great insurance) so I imagine you can get an appointment but you might have to pay for it yourself. The first open appointment they had was the beginning of May. If I were you, I'd write a personal note to Dr. Early and ask him to see you as soon as possible as a matter of professional courtesy. It sounds to me like you are badly in need of help very quickly.

I have a very warm spot for orthopedic surgeons, as one make it possible for my daughter to live a completely normal life. All the best to you.

Chipmunk
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Re: Driving me crazy

Postby Chipmunk » Mon Feb 23, 2015 4:34 am

Here is a link to the thread where people have shared doctors they liked. Hopefully someone in there named one near you! (side note: my grandparents and my aunt and uncle and cousins used to go to Marco Island every year for spring break--they loved it!)

As others have said, with that level of DA you are unfortunately quite likely to have continued augmentation. In order to quit a DA, generally one takes an opiate (something stronger than Vicodin--often it's methadone) for at least a couple weeks. Then once your body has adjusted, you can start a different treatment (opiates, anti-convulsants, etc.).

I would recommend getting your Vitamin D levels checked as well (D2 as well as D3). Mine were very low and so I started taking 50,000 IU Rx D2 once a week, along with 2000 IU D3 per day and I saw a definite reduction in my WED symptoms--even more striking than when I got my very low iron levels up.

You could try the new DA patch--it might have less of a chance of causing augmentation again because it releases steady, smaller doses. Waiting until your ferritin levels are up will also reduce your likelihood of augmentation. I augmented within 3 doses of Mirapex but was able to take Requip (ropinerole) without issue. I'm not sure, but I suspect the difference was that with Mirapex, my iron was very low when I started it whereas with Requip, my iron was at more of a normal level when I started taking it.

Also, if you really feel like DAs are the only thing that works but you feel you are likely to augment if you take them, you can set up a schedule where you alternate taking DAs one night and an opiate the next, or DAs 2 nights, opiates/anti-convulsants 1 night...you get the picture. It gives you the ability to use the medicine that works best without needing to increase the dose (because of the built-in breaks from the med to let your body "reset", so to speak).
Tracy

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

sleepdancer2
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Re: Driving me crazy

Postby sleepdancer2 » Mon Feb 23, 2015 7:28 am

As an orthopedic doctor you would be familiar with use of a TENS Unit. I totally control my legs at night by using TENS as prescribed for low back pain and my legs are calm enough for me to get some sleep. As to getting off the meds, yeah, I went through that and it was pretty bad. I think some docs say it is ok to quit a dopamine agonist cold turkey, but I was at a higher dose like you and quitting cold turkey caused me a permanent neurological glitch. For that reason I'd recommend weaning down some before quitting. I have no medical expertise, just experience. These days there are options for help during getting off a med that is causing augmentation. If I could go back in time, knowing what I know now, I would cautiously avail myself to those stronger meds, wean off the agonist, and try the TENS Unit for a while and see how you do if you reduce the meds. I wouldn't expect too much from the TENS until the augmentation is history.
My Augmentation Sleep Video: https://www.youtube.com/watch?v=jE7WA_5c73c

badnights
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Re: Driving me crazy

Postby badnights » Tue Mar 03, 2015 5:37 am

I know about augmentation, but the idea of going cold turkey for 10 days sounds like a recipe for suicide. I am worried and concerned. I tried to get an appt. with a neurologist but he wouldn't take me without a referral from a primary care Dr.
So - go to a primary and get a referral!

I wouldn't advise going cold turkey, as there is no need for such torture. What you need is a potent opioid for 2-3 weeks after quitting the DA, then assess your symptoms and take it from there. Your long-term solution might be an alpha-2delta but more than likely that will not cut it (I may be making too much of an assumption here - it seems that a lot of us have had permanent worsening after augmenting, contrary to the orthodoxy that augmentation is temporary, so I am assuming you are not going to go back down to your pre-augmentation level). You may need a mixed anti-convulsant and opioid, or - after you've gotten completely off the current DAs - a DA and an opioid (but that would scare me, frankly).

So - you need a prescribing doctor, and you need one who has experience treating augmentation of WED/RLS, or one who is willing to learn. Good luck! I hope you can get the care you need. You're better positioned than most people to understand the issues - but your background might also stop you from doing the obvious (like making an appointment to get a referral?), so watch out for that.
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.

WBruce
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Re: Driving me crazy

Postby WBruce » Fri Mar 13, 2015 1:03 am

Found a local neurologist and saw him yesterday. He wasn't the least concerned with the dosage of DA that I have been taking. He wrote a script for an extended release Prmipexole and some hydrocodone 10mg. When I went to the pharm. to get it filled I found out that the P. ER runs about $500 per month and the Dr. will not go to bat for me to get the insurance co. to pay for it. So now I have to make the decision whether to pay out of pocket for the extended release form of the same med that I am currently taking and enjoying insurance coverage for. So naturally I am wondering if anyone has had experience with the ER and if it is really worth the cost? Also, if it is really that important to get my dose down on the Pramipexole. Right now my regimen is 1mg of Mirapex at 8:00 PM and 15 mg. Hydracodone when I wake up with symptoms (usually around 12-1 AM). I am miserable from 8-10:30 each night on this program and unbelievably fatigued during the day. Any comments?

Rustsmith
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Re: Driving me crazy

Postby Rustsmith » Fri Mar 13, 2015 9:18 am

First, yes it is important to get your dose of pramipexole down. The higher the dose, the greater the probability that you are, or will, experience augmentation. Once that happens, you will need to get off of the DA. Getting off of a high dose of DA can be VERY difficult.
As for the Mirapex ER, I do not take it but I do use the Neupro (rotigatine) patch, which is another extended release DA. I was moved to Neupro when I began to experience augmentation with plain pramipexole. Supposedly, the advantage of the ER forms of DA is that you do not experience the swings in DA concentration in your system. Augmentation is associated with dramatic highs and lows in total system DA, so using a form of the drug that produces a more constant concentration in the blood stream is supposed to reduce the chances of augmentation. So far it has worked for me, but there are others who still had problems.
As for the cost, both Neupro and Mirapex ER are still in the category of patented drugs, so they are expensive. I know that both are so expensive that I pay the maximum co-pay that my insurance policy allows. At this point, the choices are yours, you will either need to pay for the ER and hope that it allows you to reduce your DA dosage, you can ask to switch to an opiate (with the issues that entails), you can suffer as you try to reduce your DA dosage to something closer to the recommended maximums (which will be very difficult) or you can continue with the status quo and hope that another option becomes available before your augmentation gets too bad.
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
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Re: Driving me crazy

Postby ViewsAskew » Mon Mar 16, 2015 6:32 am

Any neuro who isn't concerned with that dose is behind the times. WED is such a new field in so many ways - they are making strides all the time. It's truly only those who are involved in the research and are primarily interested in WED who are "in the know" so to speak.

Read the document in badnights signature written by Dr Buchfuhrer. Read the book suggested earlier, too. I can't imagine you can read either and not come away feeling that your neuro is working from 2005 info, not 2015.
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.

WBruce
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Joined: Wed Feb 11, 2015 2:14 pm

Re: Driving me crazy

Postby WBruce » Tue Mar 17, 2015 4:23 pm

Thanks so much!
Looks like a trip up to John's Hopkins is in order for me.

ViewsAskew
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Re: Driving me crazy

Postby ViewsAskew » Tue Mar 17, 2015 6:57 pm

WBruce wrote:Thanks so much!
Looks like a trip up to John's Hopkins is in order for me.


For what it's worth, I've seen at least 5 neuros (two of whom were supposedly the most up-to-date about WED) and 2 or 3 sleep docs in the last 10-12 years here in Chicago. I fly to So Cal to see Dr Buchfuhrer. No one here has even come close to "getting" it. I am not a doctor and I understand much more than any of them about this disease. It's very disheartening. You and I are lucky that we can afford to get to someone who does know about it. Many of us here cannot and try to educate our doctors - that sometimes works, sometimes does not.

Hope you have good luck there.
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
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Re: Driving me crazy

Postby badnights » Mon Mar 23, 2015 7:43 am

Earley at Hopkins or anyone on Dr Allen's team will treat you well. If you have the option, get yourself there. Those guys seem to CARE, and they have knowledge and experience with tough cases of this disease, besides.
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.


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