Hello!

Whether new to RLS 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.
WildOne86
Posts: 14
Joined: Mon Mar 17, 2014 11:00 pm
Location: Mountain West

Hello!

Post by WildOne86 »

Hello all, I just joined and figured I would give a little bit of background on myself and what I feel may be a unique perspective on WED/RLS (but then again, I suspect probably all of us have a unique take on it)..

Background: I've been reading these forums on and off for a few years, but never had the courage or desire to post, until now!

A little bit about myself: I'm a clinical pharmacist, who works for a nonprofit health insurance company, basically am a generalist. My background and specialty is in pharmacology and also neuropharmacology.. I was enjoying working retail for "the man", but ended up recently getting an opportunity to give back at this job, and am thinking what better time than now, to come on here and share and try to help as well. (PS: I'm a male! Not too many of us here with WED it seems)

As far as my WED goes .. I feel like I have somewhat of a strange case. On the one hand, I have family history (or hx as we say in the field), my mother and sister and grandfather have some form of RLS/PLMD , although not as severe as myself. I unfortunately was misdiagnosed as ADHD as a child, and was put on strong meds for that for most of my life (all the amphetamines, including Desoxyn / methamphetamine rx) .. Around 8 years ago (early college), I decided to quit these completely, which unfortunately 'unmasked' a pretty severe case of WED/RLS, which had been only a minor (intermittent and mild) problem being on the dopaminergics so long.

I think I have some serious dopaminergic neuron damage, which has been proven in the laboratory with the amphetamines , but alas, is not really studied in the context of WED/RLS . So my illness *probably* has more of a dopaminergic component to it than some. (I do support the glutamate hypothesis too).

I have moderate to severe daily RLS .. to the point that it interferes with my job, social time, and of course sleep. I get whole-body RLS sometimes, but it is mostly the legs of course.

I've been on Pramipexole 0.5mg (at night, sometimes an occasional 'crumb' during the day) for about 2 years now , plus 1mg clonazepam, plus Ambien CR (occasionally) .. I do have chronic insomnia, which was significantly worsened by ropinirole, less so by pramipexole, although the DA's are VERY useful for my RLS ... I still need the clonazepam and occasional ambien to overcome my insomnia problems.

I am slightly sad that I am now at the new max dose of mirapex, per the new guidelines. But, I am thankful to have not really had any augmentation problems.. YET (Heh)

I will probably reply to this thread later with some more musings. I tend to do a lot of thinking, which, thinking about drugs and preparing info on them, is 90% of my job, so, hopefully I can share some of that with you guys here.

I'd be glad to answer any questions anyone has about kind of the procedures and policies of healthcare in the US .. and about general pharmacology, research/literature evaluation, etc .. I would like to make it clear that I am *not* here to make professional recommendations using my license, and I'm definitely not trying to give medical advice, on a professional level.. and so there will probably be questions that I can't answer, just due to concerns over liability, legality, etc. I know everyone's body is different (*ESPECIALLY* with this condition), and so I really don't want to give personalized medical advice on here, that is what a "bona fide physician patient relationship" is for .. also your local licensed provider whether that be a pharmacist, nurse practitioner, whoever. But that said, i'd be glad to attempt to answer generalized questions, with the disclaimer that my opinion is my own and should not serve as medical advice.

Hope to follow up more soon! You guys have a fantastic message board here.

Polar Bear
Moderator
Posts: 8008
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Hello!

Post by Polar Bear »

Hello and welcome. You are right, there aren't so many men on the discussion board. Perhaps because women tend to have a higher % of sufferers, and also perhaps because women are more likely to interact - that's only my own opinion :)

It will be very helpful for us to have a member who is educated in a field that is so relevant - and please say if one of us asks anything that is not appropriate.
We are all sufferers and speak only from our own experiences. And of course, it tends to be the more severe sufferer who is driven to trawling through the internet in the middle of the night - seeking help.

How unfortunate that you were being given medication from such a young age - I have heard before of the possible misdiagnosis of WED/RLS and ADHD.
Even when my symptoms are under control, my mind is running at a gallop. Be it a part of the WED condition (I am a sufferer of 30 + years), a result of chronic insomnia, or medication !!! who knows. But I do know that my startle reflex is something that I am very aware of. I can literally jump out of my seat (well not literally, but you get my drift) from even a regular noise, the heating boiler firing is a very common one.

We look forward to your further posts.

And thank you for your kind words regarding our discussion board.
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

Rustsmith
Moderator
Posts: 5136
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Hello!

Post by Rustsmith »

Hello and welcome from one of the guys on the board. I see a number of parallels between your story and mine. One difference is instead of ADHD have have severe respiratory allergies (everything in the air), so I have been on virtually every antihistamine sold during the last 50+ years (so obviously I have been out of school for quite a few more years too). I am also currently at the max levels for pramipexole after just six months and am hoping things don't get much worse.

Your comment about the ADHD amphetamines interests me. Are you saying that you think that the long term amphetamine use resulted in dopaminergic nerve damage? The reason that I ask is that I have never, ever been able to tolerate any form of decongestant. Even the pediatric doses of the mildest products produce amphetamine like symptoms such as personality changes (all for the worse) and a rapid increase in the rate that I do things. I recently ordered a book to try to learn about how the dopamine, glutamate and norephredine systems all interact, but it isn't supposed to arrive until this weekend.
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: 16256
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Hello!

Post by ViewsAskew »

Welcome, WildOne86. Thanks for sharing your story with us. I echo Polar Bear's comments about your expertise - if at any time you feel overwhelmed, please let us know. I encourage people to ask their questions directly on the board and not through the PM system, too, as long as its appropriate. I find that often when people PM me it is something that other people would have benefited from learning or hearing about, too.
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.

Sojourner
Posts: 1657
Joined: Tue Dec 05, 2006 5:56 am
Location: USA

Re: Hello!

Post by Sojourner »

Would just like to add my "hello" along with the others and from one male to another. Sorry you're here but glad you found us. WED certainly is an equal opportunity employer. I'm sure you're professional experience intertwined with you personal experiences with WED will be helpful to many. Wishing you some peace this night.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

WildOne86
Posts: 14
Joined: Mon Mar 17, 2014 11:00 pm
Location: Mountain West

Re: Hello!

Post by WildOne86 »

Thank you all very much for your kind words and welcome! I will respond in order of posts w/ just some thoughts.

Rustsmith -- please tell me the name of that book! :) Also, I don't know if the long term amphetamine use resulted in dopaminergic nerve damage .. there is no real world evidence that really backs this up, beyond the fact that IV meth users have significant damage to their transporters (basically dopamine recycling units in the nerve cells).. amphetamines 'invert' the transporters, so that instead of dopamine being brought into the cell for use/reuse, it all floods out, causing the "high" .. this has been proven time and again in lab rats with high doses of amphetamines. Personally, I was on them for about 18 years, and I did end up with some high doses, and also more harmful agents (ie methamphetamine prescription).. so it is a hypothetical in my mind .. part of the constant battle psychologically with trying to figure out what is wrong with me and why I was forced on meds for my whole developmental period . There is also a parallel with dopamine and ADHD (proven decreased dopaminergic function basically) , which, I dont really know if I actually *have* adhd, or if it is just the effects of being off of the stimulants after growing up on them. The scientific answer is that I will never know because of confounding variables (until I could afford a fMRI or SPECT/PET scan for personal purposes .. alas a long ways off (~$5-10k). I am interested to know about the relationship between dopamine and glutamate.

Not tolerating decongestants could be anything .. you could have a more active norepinephrine system .. one thing that is interesting to know though is that anticholinergic antihistamines (ie first generation, benadryl, chlorpheniramine) , will mess with the dopaminergic system .. some of them have direct anti-dopamine effects .. but that mixes in with the fact that suppressing cholinergic activity raises dopamine activity at the nerve pathway level , this can be thought of like a see-saw. (one goes down, the other up) .. so it is a highly mixed bag.. this is why benadryl both upsets RLS sufferers sometimes, and also is occasionally used to treat akathesia (dopamine underactivity due to anti-dopaminergic meds -- the anticholinergic activity is supposed to calm the muscle activity in this type of restlessness .. but my theory is that it may actually sensitize dopaminergic receptors a bit .. but that is getting into some serious hypotheticals, I must reiterate that this is not my scientific opinion, merely personal) .

Polar Bear -- That is interesting to hear that your mind gallops all the time .. I have the same *EXTREME* startle reflex , and perhaps my overactive mind and brain have something to do with my WED , and also why I was misdiagnosed as adhd. I think my restless hyperactivity probably played a role in that too of course.

Thank you all so much!! This place is pretty cool. Especially given that nobody seems to understand what is happening with us.

Im curious, do any of you guys have problems with daytime somnolence due to the DA's ? It's completely crazy to fall asleep uncontrollably sometimes, but then of course when laying down, be unable to. Sometimes I feel that this may be more of a disabling part than the RLS itself as far as work goes. But I think I would rather be comfortable than spazzing out around my office due to the RLS. I dont really want to add modafinil at this point, that gave me strange anxiety and headaches when I tried it back in the day.

Rustsmith
Moderator
Posts: 5136
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Hello!

Post by Rustsmith »

Wildeone, the name of the book is "Basic Neurochemistry". I haven't received it yet so I cannot say anything about how useful it will be, but the table of contents looked very interesting and at $4 for a used copy on Amazon, I figured it was worth a try even if I have to read it while simultaneously doing Internet searches for definitions and explanations.

As for the first generation antihistamines, I haven't taken them regularly for more than 25 yrs. Even when I take them I only see minor impacts on either my allergy or WED symptoms. I figured that I probably have so many more histamine receptors than normal throughout my body that I just suck up any antihistamines that I take. As an example, even when I was four an adult dose of the first generation drugs had NO sedation impact on me and provided minimal relief for my allergies.

As for daytime somnolence from the DAs, this is not a side effect that I have experienced. I feel somewhat sleepy on the days following a night with limited sleep, but my overactive mental state seems to override any potential somnolence, so I just yawn a lot :) .
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.

WildOne86
Posts: 14
Joined: Mon Mar 17, 2014 11:00 pm
Location: Mountain West

Curious

Post by WildOne86 »

Does anyone else here have much in the way of daytime symptoms? I know that symptoms occurring "earlier" in the day are indicative of augmentation .. but I am not sure if I am augmenting or just having severe RLS/WED...

Prior to treatment, when it was getting really bad.. I was having symptoms start mildly during early daytime, peaking and getting VERY intense in the early afternoon , all the way through the rest of the day.

Now, I take pramipexole (approx 0.3-0.4mg) in two doses (0.125 when I get home, 0.25 or 0.375 at bedtime) , which mostly fixes me.. but, pretty much since the beginning of treatment, I am still getting bad RLS during the day, particularly in the afternoon.

I dont *think* this is augmentation, since the symptoms were there before .. and the timing is just right for mirapex getting out of my system around 1-2pm in the afternoon .. I used to work standing up and walking around for my retail job so I didnt really notice it.. now I am at a desk, and it is driving me absolutely BONKERS .. thankfully I have an office so I can wheel my chair around and kick my legs in the air or under my desk .. but the inability to sit still or focus on work is getting to be pretty insanely debilitating ..

I am not super excited about splitting my mirapex dose more and including some during the daytime, because I feel that it makes me very foggy headed and sometimes prone to zoning out or falling asleep, although it does control my symptoms (I'll probably take 0.0625mg this afternoon for example).

My biggest complaint of course is the med side effects. Not sure if opioids would be something anyone would prescribe for me at my age too (also living rurally, there are not too many 'good' doctors around here) . I suspect opioids would be less cognitively bad than the DA's but am not sure.. Also I have not seen a doctor in almost a year (last Dr visit was a newbie who just gave me mirapex 0.25mg #120, use as needed w/ 11 refills .. so I don't really have a good primary care doctor yet .. looking to get that set up).

I am curious as to the effects of the neupro patch but have not seen much discussion about it. Maybe that would be a good option for me? Ropinirole I had problems with, first off keeping me very awake, and secondly, having too short of a duration of action, it would wear off within 3-4 hours and I would have substantial rebound effects . did not experience this whatsoever with mirapex, which is sensible given their different half lives.

Rustsmith
Moderator
Posts: 5136
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: Hello!

Post by Rustsmith »

Wildone, this sounds almost exactly like me. Before pramipexole last fall my symptoms included my arms, abdomen and legs. Once I started treatment I also learned that a sort of anxious, nervous feeling in my chest muscles was due to WED. I quickly went from 0.25 at night to supplementing it with 0.125 in the afternoon due to the return of the feelings in my arms and chest. For the last week I have been up to 0.25 both afternoon and evening. It was the night time symptoms that drove me to getting treatment, but it is the daytime issues that are the controlling factor now. After so many years of continuous WED problems, I finally learned what it is like to not feel shaky and have the continuous need to move around. I really don't want to go back to that old feeling again.

I saw one of my doctors yesterday in order to make a switch in one of my other medications and I am hoping this will help with the WED. I have been taking either topiramate or zonisamide for several years as a migraine prophylaxis, but at very low doses due to the cognitive side effects of both drugs. Yesterday I had her switch me to gabapentin in the hope that it will handle both my migraines and will supplement the DA for the treatment of my WED. She seemed sure about the migraine part of the treatment but was very doubtful about the WED even after I raised the point about FDA approval of Horizant for WED. She kept saying that I could go beyond 0.5 mg of pramipexole even after I explained that this was the max recommended for WED treatment by the experts. I am losing faith in this particular doctor for both of my issues because she keeps wanting to increase to dosage of my drugs and cannot seem to understand that I am very sensitive to all drugs except antihistamines.
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.

WildOne86
Posts: 14
Joined: Mon Mar 17, 2014 11:00 pm
Location: Mountain West

Re: Hello!

Post by WildOne86 »

rustsmith. Thank you for the post! Very interesting , I guess we really DO have very similar disease courses! Back when I first read about RLS (before I had it, while the adhd meds were controlling it), i thought it was only confined to the legs and at nighttime, but , definitely quickly found out I was wrong. I think the mirapex does have a augmentation-LIKE effect, in the sense that it will tend to cause daytime *rebound* .. at least for me. (i say augmentation-like because technically, symptoms are appearing earlier in the day, but , it is clearly , time-wise related to the med leaving your body) ..

Yeah I have not met a doctor who wouldn't want to up the DA dose, because that has been drilled into their head about rapid tolerance gain and disease progression w/ parkinsons, so that's all they remember.

Maybe Mirapex ER would be an option? (good luck getting insurance to pay for that though, I think neupro would be substantially easier to get authorized) .. I am contemplating neupro or mirapex ER if my symptoms keep bothering me. Funny how having a retail job was a nice blessing in that regard, even though I am glad to be away from that, my body is not very happy lol!

ViewsAskew
Moderator
Posts: 16256
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Curious

Post by ViewsAskew »

WildOne86 wrote:Does anyone else here have much in the way of daytime symptoms? I know that symptoms occurring "earlier" in the day are indicative of augmentation .. but I am not sure if I am augmenting or just having severe RLS/WED...

Prior to treatment, when it was getting really bad.. I was having symptoms start mildly during early daytime, peaking and getting VERY intense in the early afternoon , all the way through the rest of the day.

Now, I take pramipexole (approx 0.3-0.4mg) in two doses (0.125 when I get home, 0.25 or 0.375 at bedtime) , which mostly fixes me.. but, pretty much since the beginning of treatment, I am still getting bad RLS during the day, particularly in the afternoon.

I dont *think* this is augmentation, since the symptoms were there before .. and the timing is just right for mirapex getting out of my system around 1-2pm in the afternoon .. I used to work standing up and walking around for my retail job so I didnt really notice it.. now I am at a desk, and it is driving me absolutely BONKERS .. thankfully I have an office so I can wheel my chair around and kick my legs in the air or under my desk .. but the inability to sit still or focus on work is getting to be pretty insanely debilitating ..


Some doctors don't think you can have daytime symptoms, but many of us with severe WED do, and not just after augmentation. For me, the difference between augmentation and severe is that the daytime with severe is often resolvable with just walking, moving, and having a job where you can move. When I was augmented, that wasn't enough - I had to have meds 24/7.

WildOne86 wrote:I am not super excited about splitting my mirapex dose more and including some during the daytime, because I feel that it makes me very foggy headed and sometimes prone to zoning out or falling asleep, although it does control my symptoms (I'll probably take 0.0625mg this afternoon for example). [/quote
Not sure if you've heard that Dr Buchfuhrer writes back to patients who ask him questions. Somno@verizon.net. On the website he keeps, rlshelp.org, there are thousands of answers from him. Reading those often provide the answers I need, but sometime I need to write him. He's also my doc, but he wrote me back and forth many times before he was. Since he's one of the docs calling for *reform* of how we use these, he might be a good resource in terms of your issue. Both about the concerns of dosing more than .25, total dose, and how to resolve side effects. I take modafinil as needed to deal with the somnolence issues related to the meds I take. It's not perfect, but I can function 100% better than without it! See my comments below about tramadol - also an alternative.


It sounds like you haven't yet tried the alpha 2 delta ligands - gabapentin and its kin. These drugs are becoming front line for many of the docs who've dealt with augmentation. Not sure how they'd work with your brain, but it could be worth a try.

For what it's worth, I augmented in less than two weeks and had terrible issues. But, a few years later I was able to use DAs again. But, I only used them for short periods - for me, that was 1 day on, 1 or 2 days off. That's because I had mood issues and couldn't tolerate them more frequently. But, for what it's worth, I did that for a few years without ANY increase in either the DAs or the opioids. It prevented dependence and tolerance issues. Not sure that would help you, but nice to know that is an option that can work.

WildOne86 wrote:My biggest complaint of course is the med side effects. Not sure if opioids would be something anyone would prescribe for me at my age too (also living rurally, there are not too many 'good' doctors around here) . I suspect opioids would be less cognitively bad than the DA's but am not sure.. Also I have not seen a doctor in almost a year (last Dr visit was a newbie who just gave me mirapex 0.25mg #120, use as needed w/ 11 refills .. so I don't really have a good primary care doctor yet .. looking to get that set up).

Opioids can be tough to get. For now, you're not having issues with what you're taking, so you're likely right that you might not get them. Tramadol can be an excellent daytime addition, though, for that sleepiness and docs aren't as concerned about it (though maybe they should be - dependence can occur extremely fast!). Opioids, for me, are cognitively worse. They are GREAT for the first halflife and maybe the second. But, by the time I awaken in the morning, I'm not feeling so hot. I've long thought it was the beginnings of withdrawal. If I spread my doses out more, it goes away. But the biggest issue is that opioids, for many of us, are stimulating. We're not sure if it's the glutamate connection - the symptoms are gone, but because of the glutamate, we're still awake - or something else. We just talk about it a lot here. I start taking meds in the late afternoon and take 25 mg of methadone between 4 PM and 11 PM. The symptoms are almost completely controlled then. But, I'm WIDE awake. Even if I have to get up (I am self-employed), I often can't get myself to bed and to sleep.

WildOne86 wrote:I am curious as to the effects of the neupro patch but have not seen much discussion about it. Maybe that would be a good option for me? Ropinirole I had problems with, first off keeping me very awake, and secondly, having too short of a duration of action, it would wear off within 3-4 hours and I would have substantial rebound effects . did not experience this whatsoever with mirapex, which is sensible given their different half lives.
[/quote]

Because it was off the market for so long here, we don't have many people who've been on it. It didn't function any differently for me than pramipexole - side effects were identical (including augmentation). But, I'm extremely sensitive to the DAs. It definitely works all day, which is nice. I'd definitely consider trying it in your position since you've had luck with pramipexole. Of course, you may not respond as I did!
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.

Polar Bear
Moderator
Posts: 8008
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Hello!

Post by Polar Bear »

With regard to DAs and the topic of augmentation I've been on Ropinirole for about 7 years. In theory that means that by the law of averages I could be augmenting. However after a few years on the medication and because I had never had really good relief from the ropinirole alone, I was prescribed Tramadol and/or cocodamol as a supplement. This 'cocktail' works quite well for me.

The reason that I am not convinced of augmentation is that although my symptoms are pretty much 24/7 and are also in my arms........ it was like this before I started medication i.e. ropinirole, 7 years ago.

As for working at a desk.... many years were spent flinging my legs about under the desk and out of sight. For the couple of years before retirement, I raised my keyboard as needed using a lowish coffee table and worked whilst standing.
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

WildOne86
Posts: 14
Joined: Mon Mar 17, 2014 11:00 pm
Location: Mountain West

Re: Hello!

Post by WildOne86 »

RE: Viewaskew

Yes, opioids are very stimulating to me, which I found out when I had surgery once, didnt sleep for a long time afterward, and then of course quitting the opioids made the WED worse! It's comforting / affirming (sorry if that's rude) to hear that so many of you have had the same 'strange' reactions to things that I have .. most doctors don't believe me, even some pharmacists don't believe me, when I tell them things like stimulant medications make me fall asleep comfortably, or that opioids cause intolerable wakefulness.

I'm not seeking opioids really at the moment, but I know they will be my ultimate sentence, so to speak, since I am so young and already have had such severe symptoms. I am eternally grateful every day that I can get a bit of sleep and not be thrashing around wildly at my desk. I refuse to go back on stimulants, which is most doctor's answer ("you have adhd! of course you're restless without stimulants") due to the fact that they make me think and act crazy (selfish and irritable, not 'crazy' in the truest sense of the word).

Thanks for the tips re:Dr. B!. I have done extensive reading of this board so I am aware of Dr. B. in general, and have read some of his publications, but have not read his website, wildly enough! I will definitely peruse some of those Q&A's when I have a moment.

I have tried gabapentin (a lonnng time ago, actually for a pinched nerve).. I have a little bit of skepticism about Horizant and whether it truly offers novel BBB penetration or if it is just pharma industry 'evergreening' .. Gabapentin, was so long ago that I can't really say if it helped my restlessness, all I really remember about it was feeling drunk and extremely dizzy. I am open to trying horizant when it becomes cheaper, but it's my suspicion that the cognitive side effects would be more disabling for me than the DA's or opioids, given my history of problems with that even on those classes. To me, mechanistically, it seems like the alpha-2-delta drugs would be particularly great for RLS with a neuropathic pain component, and potentially for everyone else too.. I just suspect (I wish I could confirm this more than anything in the world) that I have more dopaminergically mediated disease than maybe the "typical" (if that even exists) RLS sufferer. The glutamate hypothesis sits very well with me too though, given the general hyperarousal/wakefulness that I experience.

Thank you again! This message board is amazing, really.

ViewsAskew
Moderator
Posts: 16256
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Hello!

Post by ViewsAskew »

I agree with you about using the alpha-2-delta drugs - to me, they are best for those who experience WED as painful or have an additional pain component. They do not help me much at all. There are quite a few of us here who are not helped by them and I'm a bit surprised by the latest study that showed Lyrica to be as good (if not better) than Mirapex!

I wish I had no idea what you were talking about regarding doctors and pharmacists. I've been *fired* by doctors, had pharmacists question my doctor's scripts (one time I had to produce medical journals that supported the doctor's scripts because the doctor was clueless....), and more. I live in the Chicago area and fly to So Cal to see Dr B. I've spent ten years fighting with doctors and having horrid experiences. It's really just easier to fly there. And, not really more expensive - my last doc wanted to see me every month! With a large deductible, it was all out of pocket and costs me less to go to California once a year!

One other thing. Have you looked into an infusion and had your ferritin tested? While a percentage of people experience no reduction, a large enough percentage does that it's worth it if you can convince someone. Drs Earley and Allen have done some much research for us - As I understand it, Dr Earley would give someone an infusion even if the person's serum ferritin was what we'd consider high - 100-200. Mine was just 14 the last time it was tested - and has been low for as long as its been tested. Not sure the infusion I just had will help - but hopeful.
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.

WildOne86
Posts: 14
Joined: Mon Mar 17, 2014 11:00 pm
Location: Mountain West

Re: Hello!

Post by WildOne86 »

ViewsAskew wrote:I agree with you about using the alpha-2-delta drugs - to me, they are best for those who experience WED as painful or have an additional pain component. They do not help me much at all. There are quite a few of us here who are not helped by them and I'm a bit surprised by the latest study that showed Lyrica to be as good (if not better) than Mirapex!

I wish I had no idea what you were talking about regarding doctors and pharmacists. I've been *fired* by doctors, had pharmacists question my doctor's scripts (one time I had to produce medical journals that supported the doctor's scripts because the doctor was clueless....), and more. I live in the Chicago area and fly to So Cal to see Dr B. I've spent ten years fighting with doctors and having horrid experiences. It's really just easier to fly there. And, not really more expensive - my last doc wanted to see me every month! With a large deductible, it was all out of pocket and costs me less to go to California once a year!

One other thing. Have you looked into an infusion and had your ferritin tested? While a percentage of people experience no reduction, a large enough percentage does that it's worth it if you can convince someone. Drs Earley and Allen have done some much research for us - As I understand it, Dr Earley would give someone an infusion even if the person's serum ferritin was what we'd consider high - 100-200. Mine was just 14 the last time it was tested - and has been low for as long as its been tested. Not sure the infusion I just had will help - but hopeful.


Hahaha (@ doctor issues) .. yes, I have been bringing journal articles to visits for many years now , back when my ADHD needed a very intense approach since it wasn't really adhd, nothing was working, so I was always requesting experimental stuff. I'm surprised that chicago did not meet your needs, considering the number of good doctors there. For me, I live in literally the middle of nowhere in the desert, so I will likely be 'collaborating' with either an old, creative doc, or a young, fresh thinking type. It's a very *very* tricky issue when Dr and Patient become colleagues, but unfortunately that seems like par for the course for us w/ severe WED.

I am very interested that Earley would give an infusion to people with high ferritin! I routinely test in the 100-150 range, but, I still get noticeable effects from oral iron (high dose, as tolerated, which means occasionally, due to stomach effects). Occasionally, an iron pill will give me nearly the same benefit as a DA , albeit for only a short time (maybe a day or two) .. but it isn't consistent enough for me to put up with the constipation and GI upset. I would likely be looked at as completely CRAZY if I was to ask for an iron infusion with my current ferritin, both by a doctor and insurance company. I have been made an offer to have a consult with the chief medical officer of my organization, if I need to find a 'good' doctor .. so I may take him up on that , to find out who he thinks is actually good in the area. (Rural areas have such an insanely wide variety of practitioners, from those who couldn't hack it in the cities, to those who are brand new and moved out here for the money) .

I am very curious as to what iron infusions you guys get, just in terms of type .. since there are 3-4 main kinds and all are wildly different in terms of their kinetics (how quickly they work and how long they last, infusion times, etc) .. My favorite product from a pharmacological perspective is faraheme, but I am betting most RLSers get Venofer, since it is the traditional and cheaper route. Problem with venofer is that you sometimes need multiple infusions.

I definitely need to look into this! Do you guys pay out of pocket for iron infusion costs? The drugs are usually cheap ($25-100 per infusion) but I don't know if my insurance or anyone's would cover the $1,500 infusion costs without documented low iron. Thankfully from a coverage perspective, I suspect most RLS'ers have low ferritin, but, I dont know if iron infusions are usually covered for people with normal hemoglobin! What a shame.

Thanks for the info, that is the first completely new and genuinely helpful thing i've found in a long time regarding WED.

PS , I also have my doubts that lyrica could beat mirapex in a controlled trial .. Pfizer has been guilty of massaging the data with that drug so many times (once even in a court of law) .. I would be glad to take a look at that study and provide commentary on it, if you could give me the citation ! In managed care, we review trial data all the time for its accuracy and the design of the trial, since so much money is at stake when deciding coverage policies -- this is also one of my hobbies. Off the top of my head, I am betting Pfizer chose a measure of disease severity that slanted towards the more subjective and used lyrica's 'recreational' type effects to boost its 'likeability' and 'effectiveness' .. Those euphoric or extremely relaxing effects from Lyrica dissipate over a long enough time period.. I am willing to put money on the idea that the trial was flawed, likely on purpose. But, that's just because I have a lot of beef with Pfizer's lyrica development and marketing strategy in general.

Post Reply