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.
ViewsAskew
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Re: Hello!

Post by ViewsAskew »

Let's see if I can remember everything I want to comment on...

First, the study on Lyrica just came out. Dr Allen was the main author, IIRC. He ran the study in conjunction with a few other colleagues out of Johns Hopkins. http://www.nejm.org/doi/full/10.1056/NEJMoa1303646 .

Second, Earley really does say that he'll give people infusions with ferritin that would be considered way normal - Badnights/Beth may have that citation. He did a great webinar for the WED Foundation, but I didn't go to look at it in time and the link is dead. I think she had notes from it? It might be there that he said it.

Earley's protocol is to use iron dextran (here is Johns Hopkins site where they mention it: http://www.hopkinsmedicine.org/neurolog ... tment.html). This is not commonly given and is more expensive. If you search on ferritin and Earley or Allen's name, you'll likely find their research. They've published about the iron for over ten years. They've tried different types of iron - I can't remember why they prefer the dextran. It may be related to the antihistamine they typically give with other types - people with WED can't tolerate dipenhydramine.

I contacted a hematologist here who was willing to work with me here in Chicago. He said it was unlikely my insurance would cover it (though some people here have had theirs do so) and it would cost me quite a bit. When I went for my annual visit to Dr B a few weeks ago, he had an arrangement with a home health care agency and pharmacy. He called the order into the pharmacy, they send the drugs to the house, a nurse comes and administers. I paid out of pocket - $550 US dollars. As I understand it, I would have paid closer to $2000 here in Chicago to have had it administered in a facility. So, since my appointment was on Monday and I didn't leave until Friday, we managed to get it all done while I was there!

Let me know if I forgot anything....
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
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Re: Hello!

Post by Sojourner »

Views.. I may have missed it in another post but I hope the infusion works out well for you.

Wishing you some peace this night.
This post simply reflects opinion. Quantities are limited while supplies last. Some assembly required.

ViewsAskew
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Location: Los Angeles

Re: Hello!

Post by ViewsAskew »

Sojourner wrote:Views.. I may have missed it in another post but I hope the infusion works out well for you.

Wishing you some peace this night.


Thank you! A bit of help so far....not enough to change things, though.
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: Hello!

Post by badnights »

Hi wildone86
Somebow I missed your thread here ... I know what I did, actually, I opened your post late at night, realized I was too dragged out to be making responses on the board, left it for the next time, and then forgot because it was no longer flagged.

I also find it interesting that amphetamines seem to damage the dopamine receptors - long-term, do you think?

Re the auditory startle reflex in WED patients, it was the subject of one study, which showed that it is heightened in WED patients. viewtopic.php?f=5&t=4749&p=28088#p28088

Re daytime somnolence, I have not taken DAs regularly for years now, because I augmented on ropinirole and did nothing but sleep on pramipexole. Looking back, I wonder if I was simply that exhausted. Anyway I'm glad I didn't stay on it, I have a horror of the DAs, both from augmenting myself and from learning others' stories via this board. But I still have daytime somnolence, and I am pretty sure it has to do with two things: first, lack of quality sleep. Second, a backwards or offset circadian time (or diagreement among various pacemakers in the body). That last is, in my opinion, part of the disease; it seems that way to me and I'm not the only one. But also it may be exacerbated by the stimulant effect of opioids. Not all of us have that, but some of us do.

I fall asleep at my desk every day more than once. Rare is the day that I don't. Yet even after a day like that, of agonizing exhaustion and sleepiness, at 10 or 11 PM I perk up and cannot for the life of me shut down. I have to take a pill (zopiclone) which kills all that functionality I was just beginning to enjoy, and leaves me useless (but not always asleep).

Re daytime symptoms, LOTS. Constant. Legs, arms and other places I won't mention. I recently took 3 weeks off work and had some days without symptoms, which woke me up to the fact that I have been having continuous symptoms that varied only in intensity for months or a year now. The reason I didn't realize what was happening is because I rigged up a desk a few years ago , modified from an opthamologist's table (found at the dump by an acquaintance), that raiese and lowers. I usually have it raised and I stand all day. The other day I tried sitting - I thought first thing in the morning it should be fine - but after 40 min I couldn't stand it and had to stand. That desk has been a great help to me.

Are you augmenting? Regardless of whether you are, you can't take more (without seriously increasing your risk of augmenting and perhaps other damage), and youre symptoms are not being controlled, so you need a change. This you have to take up with your doctor - but maybe not the current one :(

Re your phrase "augmentation-LIKE effect": the other word you used, rebound, already exists to cover that phenomenon, so best to use it to avoid confusion.

Neupro would probably be the thing you would want to try first, though from my small store of knowledge I would think you should clear the pramipexole out of you first (eg 4 weeks without DAs, maybe temporary opioids to get you through that), otherwise you might start the Neupro needing too high of a dose.

I was going to ask if you had considered the anti-convulsants, but you have ansered that. Their effect on me helped me to relaize that the urge to move was indeed a separate phenomenon from the nasty sensations. Gapapentin made the nasty sensations abate (not enough, though) but did little for the urge to move, so that I was continually kick-kick-kicking when I lay down. Also even at the max and with max codeine, it did not control my symptoms, and caused terrible mood swings to boot.

I bet we'll find out some day - sooner, if more money was devoted to research - that there are various different types of WED/RLS, which accounts for some of the main variations we see among ourselves. And I think we will find that improper use of DAs can do permanent damage. Perhaps we will also find the same to be true of amphetamine use.


I have links to my posts about Earley and Connor & their excellent iron webinar... I Will see if I can find them . or search badnights and webinar.. .The deal as I undestand it is that WED patients' "normal" ferritin level varies by person and for some of us may be as high as 200-300. We consume iron and reduce our ferritin levels over times, needing supplementation or infusion at intervals, unlike non-WEDers with iron deficiency who can often raise their ferritin one time then there it sits forever without further intervention. Whatever does that for other people is broken in us... I clearly don't have a good undestanding of this. :)


But you do need to look at the infusion literature. I don't have links to the literature, but I tried to summarize the webinar. ALso I have a copy of it somewhere, that I could post - but it's just the slides, without words, and really it was the words that were so compelling.


Sorry if this is junbled, I am not reading it over because I took way too long to write it :)
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.

badnights
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Re: Hello!

Post by badnights »

I don't seem to have copied the links so I re-searched, maybe I missed something because I thought there was more than this, but anyway:

viewtopic.php?f=5&t=8439&p=68352&hilit=dextran#p68352

viewtopic.php?f=4&t=8476&p=69120&hilit=dextran#p69120

Also I have this (following) saved, from some post(s) I made somewhere on this board:

Doctors are not generally up on ferritin levels and WED. Ferritin levels of 50 are usually too low for WED patients, though they are usually fine for other people. (The units are ng/ml, in case you're curious.) The International RLS Study Group recommends ferritin levels of at least 75. Other specialists (eg. Dr. Buchfuhrer) recommend at least 100. Dr. Christopher Earley said in a recent webinar that he would not hesitate to provide supplemental iron to a WED patient whose ferritin was up at 200. Higher than that, he might still do it, depending on other factors. Yet labs routinely report levels of 20 as "normal". Doctors see levels of 20, consult their books, and tell you 20 is normal. It is indeed normal for a lot of people, but not for most people who have WED.

Low ferritin is associated with greater WED symptom severity, and with increased risk of augmentation on dopaminergic drugs.

Re intravenous iron: Dr Earley was very clear that low molecular-weight sugars were the only ones that would be effective for WED. Low molecular-weight iron dextran (also called INFeD) is what he uses, 1000 mg per dose. He says this form allows the iron to end up in the blood whereas the short-acting, HMW iron molecules cause iron to go to the marrow and stay there.

Since it takes 4-6 weeks to take effect, he does a followup at 6, 10 and 14 weeks. The IV infusion is repeated if symptoms have not improved or have not improved enough - I don't know how he determines this, but that's the idea anyway. I don't know how many times he would want to repeat the iron dextran IV. Some people just don't respond.

If symptom relief is obtained, he monitors the ferritin level on a regular schedule. It typically drops with time in WED patients, fast in some but slowly in others - over days or months or even years. (This is something that distinguishes us from other people, in whom ferritin levels stay the same.) When symptoms return, the ferritin level at the time of return becomes the target level for that person. The aim is to keep that person's ferritin above that level. For you, it might be 250. For me, it might be 80.

He is more than willing, he is happy to work with any doctor (usually a hematologist) who wants to treat WED with IV iron dextran. He says, however, that even after providing them with the research, and with a protocol to follow, it is a struggle to convince most of them that the important factor is ferritin in relation to WED, not in relation to anemia.

He has been trying to get IV iron approved by FDA as a treatment for WED, but it's complicated and my notes don't explain why.

Examples of HMW iron complexes that are ineffective : Venofer/ iron sucrose, Ferrlecit (sodium ferric gluconate complex in sucrose)

Examples of LMW iron complexes that have been effective: Ferinject/ ferric carboxymaltose; iron dextran /INFeD/Dexferrum/Imferon (mixture of ferric hydroxide and dextran)

The response among WED patients to IV iron dextran is bimodal: it works, or it doesn't. Studies vary, but it's probably safe to say at least half of WED patients who have tried it have benefited; in one study, 25% were still without medications 6 months afterward. For the most part, if it works, the result is significant, and if it doesn't work, it doesn't work at all.

If your ferritin is below 75 ng, you might be better off trying to raise it to 75 with oral iron. Above 75, oral iron is not likely to be effective, and IV iron becomes a better option.

That, anyway, is my understanding of what he presented.

Iron and ferritin in the cerebrospinal fluid will supposedly go up as iron and ferritin in the blood go up, but no one knows exactly why. (it's not diffusion so it can't be a diffusion gradient). In cases where the WED symptoms don't improve, the underlying assumption seems to be that, for some reason, iron levels remained very low on the CSF side despite raising iron in the blood.
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.

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

Re: Hello!

Post by WildOne86 »

ViewsAskew wrote:Let's see if I can remember everything I want to comment on...

First, the study on Lyrica just came out. Dr Allen was the main author, IIRC. He ran the study in conjunction with a few other colleagues out of Johns Hopkins. http://www.nejm.org/doi/full/10.1056/NEJMoa1303646 .

Second, Earley really does say that he'll give people infusions with ferritin that would be considered way normal - Badnights/Beth may have that citation. He did a great webinar for the WED Foundation, but I didn't go to look at it in time and the link is dead. I think she had notes from it? It might be there that he said it.

Earley's protocol is to use iron dextran (here is Johns Hopkins site where they mention it: http://www.hopkinsmedicine.org/neurolog ... tment.html). This is not commonly given and is more expensive. If you search on ferritin and Earley or Allen's name, you'll likely find their research. They've published about the iron for over ten years. They've tried different types of iron - I can't remember why they prefer the dextran. It may be related to the antihistamine they typically give with other types - people with WED can't tolerate dipenhydramine.

I contacted a hematologist here who was willing to work with me here in Chicago. He said it was unlikely my insurance would cover it (though some people here have had theirs do so) and it would cost me quite a bit. When I went for my annual visit to Dr B a few weeks ago, he had an arrangement with a home health care agency and pharmacy. He called the order into the pharmacy, they send the drugs to the house, a nurse comes and administers. I paid out of pocket - $550 US dollars. As I understand it, I would have paid closer to $2000 here in Chicago to have had it administered in a facility. So, since my appointment was on Monday and I didn't leave until Friday, we managed to get it all done while I was there!

Let me know if I forgot anything....


Ahh! Thank you for this info!

I didn't mean to malign anyone with my remarks about the studies . I had just assumed (incorrectly of course) that it was being done by Pfizer cronies. I see this is not the case. Generally though, there is very little that can be taken home from a non-inferiority study. They basically can say with certainty that the comparators both *can* provide a similar level of benefit, but that is all.

That is great info about iron! I may look into it. I think my iron does have something to do with my RLS .. for a variety of reasons. I've managed to get ferritin tests at least once a year lately, and have noticed some degree of correlation with my symptoms. As it sits now, I don't eat any red meat and rarely take iron, and could probably do with an infusion.. getting the money together or coverage will probably be a hurdle. That is amazing that Dr. B was able to coordinate home infusion at a site across the country from him! and at a cost of $550 you basically were paying base-cost only, which is amazing given the tendency of the healthcare system to financially abuse cash-paying patients.

I am pondering talking with one of the MD's who work with me to find a good doctor in this area (which is rural, and I am new to) , but am unsure if I should bring it up due to stigma, about neurologic conditions in general, and about RLS, which unfortunately.. most physicians are either in the camp of "can't be that bad" or "this condition was invented by pharma" .. not too much knowledge out there about refractory/severe RLS, which I guess pretty much all of us on here have. I can say with certainty that my symptoms are a far cry from the RLS that seems to have been 'popularized' by pharma. My other option being cold calling Dr.'s offices and asking if they have experience, or just wasting copay money til I find someone who is smart enough. My MD colleague invited me to bring him confidential health questions or to ask for help looking for Dr's as a sort of fringe benefit of employment, but I am not sure quite how appropriate that would be.

Thank you again for all the links and reading material! I am excited to read them. Sometimes I shy away just because too much focus on RLS seems to aggravate it or just make me a bit sad about the current state of affairs , both my condition and the medical knowledge out there.

ViewsAskew
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Re: Hello!

Post by ViewsAskew »

I think it's so hard to find a doctor. I've done it both ways - bring it up and hope for the best, and call offices to find a doc what gets it. I found that when I called (I had 30 potential doctors), that it did help me weed out the 95% with no chance of helping. But the ones who supposedly "got" it? Not so much....I've yet to find someone in a metro area of 8 million people who actually treats refractory WED patients. I can't imagine what you'd find.

One thing I did was to look at the authors' names on WED studies and see if any were close to me. Never has one been from Chicago - odd, isn't it.

I really was lucky with the iron infusion - to be clear, Dr B arranged it for me in his backyard - I was in California and it was coordinated with a pharmacy and home health-care nurse service they use. They just charged for the medication, the IV support, and the nurse. They gave her a flat fee o0f something like 2.75 hours or something. All in all, they made money - which goes to show how screwed up the rates for things are!
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 think it's so hard to find a doctor. I've done it both ways - bring it up and hope for the best, and call offices to find a doc what gets it. I found that when I called (I had 30 potential doctors), that it did help me weed out the 95% with no chance of helping. But the ones who supposedly "got" it? Not so much....I've yet to find someone in a metro area of 8 million people who actually treats refractory WED patients. I can't imagine what you'd find.

One thing I did was to look at the authors' names on WED studies and see if any were close to me. Never has one been from Chicago - odd, isn't it.

I really was lucky with the iron infusion - to be clear, Dr B arranged it for me in his backyard - I was in California and it was coordinated with a pharmacy and home health-care nurse service they use. They just charged for the medication, the IV support, and the nurse. They gave her a flat fee o0f something like 2.75 hours or something. All in all, they made money - which goes to show how screwed up the rates for things are!


Yeah, I think my chances of finding someone who has a decent amount of experience in refractory RLS is about 0.01% .. I think it would be much better to maybe just ask my colleague about which Dr's are open-minded and will work with me. The question is whether to look for someone young or old, of course. Younger doctors seem to be more open and exciting about making a difference and learning about things that they don't know .. older MD's may be more likely to value my experience and medical knowledge perhaps... and more apt to just go with 'whatever is practical' .. What are you guys' takes on this issue?

ViewsAskew
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Re: Hello!

Post by ViewsAskew »

Seems we've had it both ways. One of our members is working with a young neuro and it's been a great partnership - he values her input. I had great success with a young and older doc - father and son who worked together. They both listened, etc. In terms of specialists, my experience is that older ones are very hard to work with - they really think they know it all. But, I've seen all of 8 to 10 of them - certainly not statistically significant!

If I remember correctly, Dr Buchfuhrer (a pulmonologist) started treating WED/RLS because he would see sleep apnea patients and started reading sleep literature. At some event, someone convinced him that WED was something important and that he should also pay attention to. I guess you never know when someone will find this interesting and be willing to learn more about it.
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:Seems we've had it both ways. One of our members is working with a young neuro and it's been a great partnership - he values her input. I had great success with a young and older doc - father and son who worked together. They both listened, etc. In terms of specialists, my experience is that older ones are very hard to work with - they really think they know it all. But, I've seen all of 8 to 10 of them - certainly not statistically significant!

If I remember correctly, Dr Buchfuhrer (a pulmonologist) started treating WED/RLS because he would see sleep apnea patients and started reading sleep literature. At some event, someone convinced him that WED was something important and that he should also pay attention to. I guess you never know when someone will find this interesting and be willing to learn more about it.


Ahhh. good input. That is good to know about specialists. I was on the fence about maybe contacting a neuro but this helps me settle the issue.

Yeah I think based on my run ins with specialists as a pharmacist and as a family member of a more traditional neuro patient .. I think most neurologists are pretty full of themselves and mostly only interested in academic type pathology (complex seizure disorders, multiple sclerosis, etc) .. and sleep center people seem to be mostly in it for the money from the sleep studies and tend to come from more of a pulm perspective, they may not want to deal with RLS's complexities. So I think I am going to look for a family medicine or internal medicine provider. RLS is not that complicated compared to most disease states, at least from an academic and pathology perspective, I would understand a PCP not wanting to learn about say, a complex cancer or complex neuro disorder such as epilepsy, but I would *HOPE* that they would be willing to read the like 3 guidelines that exist on RLS management.

From my experience, bringing primary literature or even guidelines to a doctor has been very useful, I have noticed a look of relief on their faces when they understand that i'm not crazy, and that they dont have to go to the effort of trying to figure out what the hell it is i'm trying to talk about - theyre more comfortable with medical literature than say, trying to diagnose a 'strange nerve thing' in someone whose legs 'wont stop moving'. (i only have exp with this from an adhd perspective, with regard to trying experimental drugs for it)

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