My visit with Dr. Rye

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SleepyBhamster
Posts: 40
Joined: Tue Aug 25, 2020 4:04 pm
Location: Birmingham, Alabama, USA

My visit with Dr. Rye

Post by SleepyBhamster »

Yesterday I had a 1:30pm appointment with Dr. Rye at Emory in Atlanta, GA. We left early (from Birmingham) but with traffic, parking, and checking in still managed to be a little late. I had filled out forms for 3 hours the day before but was given a lot more to fill out there as well. Dr. Rye was nice but a rather odd guy. Casual in appearance and very talkative. VERY TALKATIVE. He did probably 90% of the talking. Kept telling me he had to go and had other things to do, but then kept telling us about studies and his opinion on other doctors' opinions. At one point I spaced out and my husband yawned behind his mask, but the doctor kept going on about a British study that had nothing to do with anything as far as I could tell.

But with all his making me feel as though I was eating up his precious time, he ended up spending 2 hours with us. He suggested a great Bangladeshi restaurant for a late lunch and it ended up being a 12-hour day for us.

So here's what I learned:

1. Dr. Rye is not of the opinion that iron solves everything. Because all I know comes from what I've read on RLS.org, and everything I've watched and read had to do with iron and the necessity of infusions for those with low ferritin levels, I was QUITE surprised when he said that my ferritin level of 30 was not bad. He doesn't deny that iron helps and he does order iron for some of his patients, but he doesn't seem to think a lot of those doctors who focus entirely on iron being the culprit. He said something like, 'If the problem is iron, then the question should be 'Where's the leak?'"

2. It took forever for me to successfully get in a question on what I should do if I found that the iron infusions weren't enough. Right now, I'm 90% better than I was a month ago, but I wanted to ask just in case the effect wears off sooner than expected. He said that the infusions should be good for 9 months--which is less than the year I had expected. He said if they don't help me enough then we could look at medication. He said he liked pramipexole because there are less problems with it--and I immediately asked if that wasn't a dopamine agonist. When he said it was, I told him that so much of what I've read and heard on RLS.org was against the use of D.A.s. Told him Mark Benkowski said, "Dopamine Agonist = Dopamine Agony!" That annoyed him greatly, and he assured me that dopamine agonists in the hands of an expert can be very effective. He agreed that the average general practitioner shouldn't go around prescribing D.A.s, but he follows his patients closely and would stop or change things if problems came up. I was still a little leary until he said he's been taking the drug for 20 years himself.

3. I'm a little confused about this, but as much as he is certain that not all RLS is related to iron, he and his team are studying pica behavior as related to RLS. The very first thing he asked me was whether I ate ice, citrus, clay, ate paint or plaster off the walls. I knew immediately what he was talking about and told him that my first job was as a library page on the reference floor. Out of boredom, I read a small book on pica behaviors. the need to eat odd things because of iron deficiency. I had been trying to win the doctor over with charm, but my knowledge of pica is probably what made him spend more time with us. ;-)

This is all I can remember for now. There was so much information and I'm still fatigued. (This was the 5th doctor's appt of the week.) But Dr. Rye wants me to get a sleep study done even though I've been trying to avoid it. I told him that my dentist is making me a mouth guard that is supposed to help stop snoring/apnea, but he said that is only for mild cases and how do I know I have a mild case without a study? I didn't get to tell him that my ENT was certain my case was mild because of the way my uvula was. (Guess it's too short to cause apnea? I forget. Somehow he could tell in the examination.) He didn't think 2.5 hours was a very long way to come and felt I should get it done there at Emory. But I'm wondering why I couldn't just have one here.

He gave me two prescriptions: one for Ambien to take as needed and in particular to knock me out for the sleep study. Said it's best if people are really knocked out cold when they get a study done. He also prescribed Sinemet to take as needed, but told me to take no more than 3-4 times a week. Very happy to have both: I used to take Ambien until we moved to Birmingham where my new doctor refused to prescribe, saying that he didn't want me showing up naked in a hotel lobby. Dr. Rye took our Lord's name in vain when I told him that, which I didn't appreciate. But I am glad that he is not of the same opinion.

That's all I can remember--except that he drew blood for DNA studies and also to check my iron. I guess I'm a study subject now.

Sleeping better but still

Sleepy

Rustsmith
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Re: My visit with Dr. Rye

Post by Rustsmith »

Sleepy, Dr Rye was one of the researchers involved in the first study that identified a gene associated with RLS. He has a MAJOR problem with the editors of the New England Journal of Medicine because they changed the title of his paper without his permission and removed RLS, just leaving PLMS in the title. But you probably heard that from him. But as I understand it, he does DNA tests on all of his patients and has a large enough database now that he is starting to see trends based upon which RLS genes that you have (or don't have).

As for DA's, I would have to agree with him that in the hands of one of the RLS experts, you will be fine. Just be sure that you watch for any impulse control issues (or more correctly, your husband needs to watch you) and then be sure to contact him if you start to see signs of augmentation. Since he runs one of the Quality Clinics, that also means that he will be able to prescribe an opioid when you do augment (which could be years from now). In the meantime, pramipexole will seem like a miracle drug because until you experience one of the side effects, your RLS will seem to be gone.

Finally, I totally understand your concerns about Ambien. I used it for a while. I stopped (ironically enough during a trip to Birmingham) when I apparently zoned out at breakfast one morning the day after running a half marathon there. I remember sitting down and ordering hot tea and then the next thing that I knew, I was walking down the hall toward my hotel room. I have no idea what happened in between other than my stomach was full, so I know that I ate breakfast. That scared me enough that I haven't touched it since.
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.

SleepyBhamster
Posts: 40
Joined: Tue Aug 25, 2020 4:04 pm
Location: Birmingham, Alabama, USA

Re: My visit with Dr. Rye

Post by SleepyBhamster »

Yikes on the Ambien. I would only take when desperate and then only half or a quarter dose as I'm very sensitive to meds. (Dr. Rye kept saying my doses were "pissing in the wind." ;-) And because of warnings like yours here, I would not take one while traveling--hoping that I couldn't get into too much trouble here at home.

He did not tell us that about that article. He did talk a lot about genes and RLS, but my husband and I were quite confused most of the time. My problem was that I kept trying to figure out if what the doc was saying related to me, but it seems he was just talking/venting/explaining what he does.

He has not yet prescribed the pramipexole; since I'm delighted with how much better I am from the iron infusions, he's going to wait to see how I do. However since my sleep still isn't very restorative, he wants to go ahead with the sleep study. I tried to explain that with lupus for 18 years now, I NEVER feel rested and have been led to believe that that's just the way things will always be for me.

Thanks!

stjohnh
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Re: My visit with Dr. Rye

Post by stjohnh »

Dr. Rye is quite likely correct that iron isn't the whole story, and his emphasis on genes is probably appropriate. There are about 20 genes (AFAIK) associated with RLS. The current theory about iron is that to get into the brain, the iron needs to go from the blood, across the Blood-Brain Barrier, and into the brain. This is very likely mostly determined by genes. Clearly iron is important, but there may be a better way of getting iron into the brain than IV infusions. For me, IV Iron works wonderfully for control of urge-to-move, but helps sleep only partially. Problem with concentrating on the genes is that there is nothing we can do about our bad RLS genes today, though that could change in the future. Mostly we have no idea what the abnormal genes actually do, we just know that RLS patients have them.

As far as an "iron leak" we all slowly lose small amounts of iron in our bowel movements. Menstruating women of course, lose lots each month. Pregnant women lose iron as the baby grows, it takes lots of iron to make the blood and tissues of the developing baby. The problem isn't that our bodies don't have enough iron, most RLS patients have "normal" total body iron. The problem is that it doesn't get into the brain properly (or conceivably it leaks out of the brain into the blood).

There are four major classes of RLS treatment: 1. Iron (the only one with little to no significant side effects). 2. Dopamine agonists (with occasionally severe loss of impulse control, severe RLS worsening due to augmentation-both can literally ruin people's lives). 3. Gabapentin and it's relatives (also occasionally other anticonvulsants) also help. These only work for mild RLS and at more than low doses have lots of problems with daytime sleepiness and brain fog. 4. Opioids. These are the most universally effective drugs, but they frequently cause nausea, sleeping problems, hyperalertness, constipation, and of course the social stigma of using opioids is immense, causing lots of patients problems in obtaining needed meds and using them.

I think the data on IV Iron, in summary: Works for about 50% of RLS patients. Don't know why it doesn't help others, but it is well established that all RLS patients have low brain iron (even those who have hemochromatosis, a disease with very high blood iron levels). For those that respond, it usually takes a few weeks after the infusion to have a noticable effect. The first infusion lasts the shortest period, sometimes only a few months, but subsequent infusions provide longer relief. Usually around a year by the 3rd.

As far as dopamine agonists go, lots of people remain on them for many years without problems, especially if taken at low doses. The generics are cheap, and work well for many people. Remember that when you read the messages on a bulletin board forum like this, that many of the people here have more severe problems than most... duh, that's why they logged on. The many people doing well on dopamine agonists don't check out forums like this because they feel fine, so why bother.
Blessings,
Holland

Rustsmith
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Re: My visit with Dr. Rye

Post by Rustsmith »

To build upon Holland's info, I am one of the ~50% that do not benefit from iron. My ferritin has been as high as 650 and as low as 42 and my RLS was the same in both cases, very severe. I should also add that I have most of the genes that Dr. Rye mentioned as being significant for RLS.

There is a new paper that is in pre-publication by Dr. James Connor, et al., that describes laboratory scale research work that his group has done. They grew a sheet of the cells that make up the blood-brain barrier and then put high iron blood on one side and a synthetic cerebral-spinal fluid on the other and then watched how the iron moved through. They found that in some cases, the iron moved into the barrier cells, but not out. So, they determined that it isn't as simple as ferrous irons from the ferritin diffusing through the barrier and into the brain. It turns out that the cells of the barrier have to do some chemical processing and that some of the proteins responsible for that processing are probably tied to a couple of the genes that have been correlated with RLS.

The other thing that was interesting and controversial in Dr Connor's work was that they found a better correlation between hemoglobin iron and iron transfer through the barrier than they did with ferritin. Obviously, that does not correlate with clinical experience, so there is much more work that needs to be done in that regard. Still, the idea of actually being able to study iron transfer from the blood into the brain is exciting, especially for those of us who do not seem to benefit from high serum ferritin.

In addition to my earlier mention of Ambien, I should add that a number of years ago the FDA reduced the recommended dose for Ambien and as I remember, there was also an added warning that the minimum dose should be further reduced for women since they tended to be more susceptible to the side effects of sleep walking, etc.
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: My visit with Dr. Rye

Post by Polar Bear »

Referring to Steve's experience of an absence with Ambien.

Last December I was working on Election Day which entailed an early start of 6am. I experienced an absence of 90 minutes from 7 - 8.30am but had clearly been working during that time. I came to at 8.30am in a state of minor confusion i.e. not know what had happened.
I saw my GP the same day who ruled out as far as possible mini stroke and petit mal. Two months later I had an MRI which did not show any negative signs such as stroke.
Reading of Steve's experience I am thinking that it could have been the effect of my sleeping tablet zopiclone. None of the doctors mentioned this possibility.
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

SleepyBhamster
Posts: 40
Joined: Tue Aug 25, 2020 4:04 pm
Location: Birmingham, Alabama, USA

Re: My visit with Dr. Rye

Post by SleepyBhamster »

Oh my, Betty! I will definitely be cautious about the ambien. Told my husband I definitely won't take it if he won't be around me the next day.

Thanks, Holland and Steve, for the additional information. Don't have time to write more now.

Polar Bear
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Re: My visit with Dr. Rye

Post by Polar Bear »

SleepyBhamster - I haven't used a sleeping pill for over 6 months. I do have a supply just in case the situation should ever change but don't use them, even on the nights when I'm getting only 2 or 3 hours sleep.
As an aside - I am awaiting assessment for treatment of moderate sleep apnea and the Consultant's Report to my GP mentioned that with sleep apnea it would not be wise/safe to use a sleeping pill.
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

debbluebird
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Re: My visit with Dr. Rye

Post by debbluebird »

I have taken Ambien only a couple of times. I was given it for a sleep study. I took it a couple of weeks before to try it out and found that it did nothing for me. My sleep was the same. It didn't knock me out like we wanted it to.
I have also taken sinemet. I found that it only lasted about 4 hours and then my legs were worse each time afterwards. Augmentation is just too strong for me.
Good luck

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

Re: My visit with Dr. Rye

Post by Yankiwi »

Ambien is not available in New Zealand. I've used a half tablet a few times (my sister's) on trans Pacific flights. Cliff was asleep for about seven hours and me only about three. Now that he is gone and I travel alone I don't dare take a sleeping pill on a flight by myself. Of course, no one is travelling now.
Zopiclone does nothing for me. I augmented fast on Sinemet about 25 years ago. My doctor didn't know it couldn't be used daily.

badnights
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Re: My visit with Dr. Rye

Post by badnights »

Hi Sleepy
Love your description of Dr Rye! It must have been a bit of a challenge to learn how to deal with him. I think I would have enjoyed his nerdiness.

I think Holland's post is the best summary you're likely to see of those topics, as is Steve's description of Jim Connor's blood-brain-barrier experiments.
I was still a little leary until he said he's been taking the drug for 20 years himself
To me, that's not necessarily a good thing. It makes me recall an article in the British Medical Journal by a doctor who trivialized RLS/WED, saying it was being exaggerated by media and pharmaceutical companies. He considered patients who couldn't handle it as weaklings or whiners (not his words, just the sense that it gave me, as I recall it - it's been a while since I read it). Adn to prove his point, he said that he himself had RLS.
My interpretation is that he has a mild case, and doesn't have the insight to realize that there's a wide range in severity, or the imagination to see what a severe case would be like.
So maybe the fact that Dr Rye has been taking pramipexole for 20 years without trouble is sort of blinding him to the agony that other people have been through.
he is certain that not all RLS is related to iron, he and his team are studying pica behavior as related to RLS. .... I read a small book on pica behaviors. the need to eat odd things because of iron deficiency
1. Does Dr Rye have pica? - just kidding!
2. Since pica is related to ID, he's actually studying ID in RLS/WED, though not necessarily brain ID.

It might be better to get the sleep study done where he is, for him to have easier & faster access to the data, and in case his lab has protocols that are different.

He has given you good advice on the Sinemet. I use it exactly as he suggests, and it can be very handy to control breakthru symptoms. I never take it more than two nights in a row, nor more than 3 nights a week. Also, for me, it causes rebound symptoms when it wears off, after about 4 hours, so I avoid taking it more than 4 hours before I have to get up. That way, I am up and about when the rebound comes and it doesn't bother me.
@Yankiwi, I wish people had known. They STILL don't know. My doctor's mother has WED/RLS and the mother's doctor prescribed Sinemet! My doctor told her not to take it (her own mother) but the mother was so relieved to have something that worked, she continued taking it, unable to believe it was going to eventually be a big problem. I don't know what happened, I keep forgetting to ask my doc.
since my sleep still isn't very restorative, he wants to go ahead with the sleep study. I tried to explain that with lupus for 18 years now, I NEVER feel rested and have been led to believe that that's just the way things will always be for me.
Let's hope that it doesn't have to be that way!
Oh my, Betty! I will definitely be cautious about the ambien. Told my husband I definitely won't take it if he won't be around me the next day.
Betty and Sleepy: I've had those things happen in the middle of the night, but never the next day. I've never done anything that I wouldn't normally do (that I know of - haha) but I've done things like eat without any memory forming - leaving the evidence for myself to discover in the morning (unless I have an invisible house guest).
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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