What We Learned at the National Meeting 2005 Orlando

[becat]

Let this serve as our collective What We Learned At the Meeting Post.

I'm hoping Ann, and Ruby, ButterFoot, anyone else helps to fill in my blanks here and catches us up on all I missed. I did hear some interesting things.

Dr. B., is mentioned here often and the Southern California Group, for good reason. I was very interested in the fact that he offers his RLSers a wide choice of medications. I've been saying for a while, this is a variable disorder. Seems that for most of us, in one week we can have many different symptoms or RLS related problems, not all on the same day.

Dr. B. suggested that he likes to make sure the people he sees have options. There is a base therapy of medications, but maybe one night you need to go to bed early and need a sleep aid.....done, it's there for you to use. What if your having a painful day......ok, you might need a pain med....done. He trust his people enough to know that they pay attention and know what might be helpful one day, might not be enough or right the next. So he thinks that there should be a medication bag of trick (of sorts).
I loved that and have thought about it before. He did acknowledge that pain medications are hard for us to get, but does not think they should be. WOW, only wish he could convince others to think along these lines. I'm not preaching pain meds., just the thought that the more choices we have, some of us could abtain better control or management.

[jan3213]

It's Jan

I just got home late this evening and couldn't wait to get on here and say a few things.

First of all, my experience at the National Meeting was wonderful. It was an emotional week for me--it's the first time I've been surrounded by people just like me and I had been told what it would be like, but it doesn't "hit home" until you experience it. I was in a room full of people who can't sit still and no one thought a thing of it!

On a different note, the one thing I came home with was HOPE! I took lots of notes and they are still packed, so I don't have those in front of me. But, one thing that sticks in my mind (besides what Becat mentioned) is the ongoing research and the strides that have been made. I'm not a scientist and I won't attempt to relay what one speaker, who was also a doctor, said. But, I will say that there is much to be hopeful for.

And, I'm so happy to know that more and more people are becoming aware of what RLS is and that it is a real problem for so many people, thanks to the efforts of the Foundation and the "faces of RLS"--including our own Becat.

It was such a gift to be able to be at the meeting--to share with others and to know that, even though everyone there is fighting their own individual demons, they are such a caring, compassionate group of people. I came home with a renewed strength and an even bigger passion to fight--not just for myself, but for all of us.

Jan

[ViewsAskew]

I will add my two cents later as I am still vacationing - am in a St Pete's Beach hotel looking at the gulf as I type this. I haven't had a chance to connect until today.

It was a great meeting! I wish I had met Margot, but meeting Jan and seeing Becat and Ruby was great.

Later!

Ann

[Rubyslipper]

I'll try to organize my notes and handouts this week-end so I can post anything I think might be of interest to anyone. But I want to let everyone know that Becat did an excellent job of telling the Support Group leaders about her "Quality of Life" statements that so many have contributed to. I also took some to the Board of Directors meeting that I presented to. Becat, most of them had already read the satements and had nothing but praise for your efforts. I did give extras out to the new oncoming president of the board. One area that I am going to push and I know I probably won't be popular about but here goes. It really hit home to me during the Board of Directors meeting how important fundraising is. I'm not asking about sending in lots of money (unless you are in the position to do so) but if you could see your way through to join the Foundation for $25 each year it would really help out. We get so caught up in supporting each other (which is so very important!!!) that we forget that there are others who are doing such great things in the form of research. Support is wonderful and we have to have it but if we don't have research ongoing, we'll be supporting each other forever and there will never be a cure. No matter what happens, we have each other. But so much has happened in the arena of help for symptoms. I know that many of us still are battling RLS and its ugly symptoms. But there has been improvements made and gains made in research for a cure. But it does take money. $25 a year from each person who can afford it really isn't too much to ask in my book. I can't talk for eveyone and hope no one takes offense. It just really hit home that I am not doing my part in funding the research that will someday end this misery. Hopefully in my lifetime, at least in my daughters'. If you want to debate or call me on the carpet, it's okay. It was a great conference and I wish there were more time to spend with my friends. You would have been proud of them.

[ViewsAskew]

Ruby, hear-hear. The Foundation does many wonderful things and we all benefit. Some of us cannot at this time manage $25, but many of us can. I strongly believe we need to do what we can to fund this effort. If we think about it, some of us spend $4 bucks on a fancy coffee drink every day! In a week of abstinence, we could pay our $25. Gosh, a glass of wine with dinner is up to $7 for mediocre wine in many places, making $25 a bargain.

I was so impressed with how hard these researchers are working on our behalf. Sure, they are motivated by other things that our suffering, but they truly seem to genuinely care about us and what we go through. if I can help them do that, I'm all for it. I hope many of you feel the same way. Then again, maybe you are all members already and I'm preaching to the choir.

Thanks for mentioning it, Ruby. No admonishments from me.

Ann

[ViewsAskew]

OK, here is my first update, of what I hope to be several. I was going through my email and found this link to an article:

http://www.prnewswire.com/cgi-bin/stori ... 977&EDATE=

Basically, it is about a study the the Foundation did in conjunction with another group. A HUGE percentage (over 50%) of people are still unfamiliar with RLS. But, the best part if that this number is significantly lower than last year! Over 60% weren't familiar last year.

[jan3213]

Ruby--

I'm behind you 100% regarding joining the Foundation. After listening to the speakers talk about research and the strides that are being made, it made ME realize how important every penny is!

And, Becat DID do a wonderful job talking about the Quality of Life statements. You could have heard a pin drop when she spoke.

We have many wonderful people on this Board. But, I would like to personally thank two in particular! Ruby is a Support Group Leader and is on the Support Group Advisory Board, and Becat is a Support Group Leader.

I'm proud to know them as friends, and so grateful that they are willing to give their time to help others. Thank you for all you do.

Sincerely,
Jan

[ViewsAskew]

As I was unpacking and looking for my notes, I came across some items I received at the conference. My deepest thanks to those that supplied them to me. What wonderful people we have in this group. You are very special.

OK, on to my notes. The speakers at the conference were primarily Dr's Rye, Allen, Hening, Buchfuhrer, Cuellar, Picchietti, and Mr Waterman. Rye does research at Emory, Allen at Johns Hopkins, Hening at Robert Wood Johnson Med School. There were about 150 to 200 attendees, but this year many were under 50, where last year most were over 50. People from Requip and Mirapex were also there, as well as people who are doing PR about RLS.

There were many sessions and they addressed different topics. Some covered included new research findings, RLS and children, RLS and depressions, augmentation, epidemiology, upcoming treatments, and the causes of RLS. Some of these were held in a large hall with everyone in attendance, and others were held in small, intimate groups. I couldn't attend everything, as there were four small meetings at a time. I think Ruby, Becat and I attended mostly different things, so we should each be able to supply different information.

I was unhappy that there was only a fundraising dinner on Saturday evening. I believe that group leaders got to go, but I am not a group leader, so was not invited. I had set aside that time to spend with my wonderful friends from here and missed being able to do that.

Next year, the event will be in San Antonio. I highly recommend it to everyone here. If you have a vacation coming, ask for it in November! San Antonio has a beautiful Riverwalk area and some great sightseeing opportunities.

Ann

[ViewsAskew]

I'm getting tired, but I will try to tackle one more topic. Dr Hening covered the topic of upcoming treatments. You can email him at waheningmd@aol.com for a copy of his slides.

Mirapex is undergoing trials to get approval from the FDA. It is expected to get approval sometime in 2006 or 2007. All drugs approved within the next 3-5 years will be DA. Rotigotine, the patch, will probably be approved in 2007-2008. This has a short 1/2 life, but continuous release, so supplies a consistent drug level in the body. It is non-ergot derived, making it safer than the ergot-derived DAs. It had the typical side effects of the DAs and some people have had skin reactions. It was shown effective in Phase II trials and is currently in Phase III trials. It is the first drug to be developed simultaneously for RLS and Parkinson's.

In the future, they will be looking at other routes for delivery and other classes of drugs besides DAs. Some that are possible include a rapid release compound, as sustained release compound, and subcutaneous/intraveneous compounds. Nothing currently is in trial like this, they just think these are the approaches that will be taken.

They are hoping to have some new ways to analyze blood within the next year that will make it easier to identify dopamine and ferritin levels.

IV iron has been tried in only one study. So far, it is showing that it works for 60% of people for between a few months and up to several years. This study is ongoing and still accepting volunteers. They have found that the ferritin drops to pre-treatment ranges within a period of a couple of months or so after the first treatment; each person in this study has lost iron at the rate of 6-8 times that of non-rlsers. Each person has received several infusions over the period of their involvement in the study. With each infusion, thought, they lose the iron less quickly! This is good news, as it appears that with several of these infusions, people with RLS retain the iron more like other people do.

I seriously urge anyone that can get to Johns Hopkins to consider doing this. Without our participation, they can't come up with new drugs to help us. This study pays a significant amount, by the way. Johns Hopkins also has several other studies that are accepting participants.

I think that is it on prospective new treatments. Becat, Ruby, Betterfoot - please add anything I missed.

ADDED 11/18: I forgot some notes. In 5-7 years, it is likely that one or more of the opioids will be studied/developed/approved by the FDA. This is good news for the people for whom this class works but have a hard time getting them. He also said that besides the dopamine agonists, the anti-seizure drugs will not be developed/approved, nor will any from the sedative/hypnotic category. He was not sure about any new drugs being developed. As of now, there just isn't enough research backing development of a new drug.

He also said that the following are likely possibilities that someone will choose to work on (but none of these are in development): combination pills (like a combination cough supressant and nasal decongestant), skin implant, medication delivered into spinal fluid, or surgery such as a spinal cord stimulator or a deep brain stimulator.

Ann

[cornelia]

A big thank you to everyone who commented on the Conference and shared their notes they made there. Wish I could have joined, but I get a good impression reading your posts.
The most important thing, I guess, is, like Jan mentioned straight after coming home, is HOPE.
It is good to read that researchers are doing their utmost to find a solution or try to find a better quality of life for us.

Does anyone know whether dr Walters is doing some more research on EECP (Enhanced External Counter Pulsating)? He did research on 6 people with very good results.

I emailed dr Hening already if he would be kind enough to post me about ongoing treatments. I want my neuro to know.

Thanks again.

Corrie

[trevb]

hi guys,
wish i could have been there and met you all

thanks for updating us all so far we appreciate it.

keep posting updates as you are able, for us that could not attend...even if its a small snippet of something you remember.. particularly any thing that you took home with you, i.e.- when i go to conferences theres always something that really sticks out and stays with me. it has been really useful so far so thanks to all who have taken the task of posting.

[jan3213]

Hi Corrie

In Friday night's session, Dr. Rye and Mr. Waterman spoke on RLS Science Advances. Mr. Waterman did talk about the sensory side of RLS--what is feeling----------

He told us of studies on sensory implants in the spine and said that these have been successful. My notes are not great on this particular topic, so someone else might have more information. I don't know if that's what you are talking about or not.

One thing that DID stick out in my mind from Dr. David Rye's presentation--because it's close to home (I have identical twins)--is that if one has primary RLS and has identical twins, there is an 80% chance that the twins will have RLS. Also, according to my notes, again for primary RLS, each successive generation has it worse.

If I have this information wrong, please feel free to correct me.

Jan

[cornelia]

Jan, thanks.

Your twin story is scary. That means if your twins have RLS their children will have a 100% chance of getting it too? If so, the researchers have to work even harder to save your grandchildren from having a difficult life. But as you said: there is hope for the future.

No, what you described about the spinal thing I didn't mean, but nevertheless is very interesting. Who knows what science will come up with still more.

EECP is a treatment for I can't remember which kind of patients (heart?) during which cuffs on the legs are inflated and deflated and by chance it was discovered that it helped RLS tremendously.

Corrie

[ksxroads]

Looking forward to additional posts! Thank you and Blessings to each of you. Love Hazel

[ViewsAskew]

Corrie, no mention of EECP. Maybe you could write him and ask him about it. Or see if Dr Mark knows about it. Dr Walters wasn't there, and no one mentioned it, so maybe the study wasn't repeated.

I am tired and ready for bed, but I'll add something about augmentation. Dr Allen talked about it last year, and again this year. They are not sure, but they think it may be less with long 1/2 life drugs, such as Cabergoline. However, he said there was no hope that it will be approved in the US for treating RLS. They also think the patch will have a lower augmentation rate; it is still in clinical trials.

In terms of Mirapex, the studies show augmentation rates of 30%. It has never been measured with Requip, but they expect it is about the same. To their knowledge only DAs cause augmentation. The word augmentation is actually a word used only for RLS! This is not a common medical term - I was surprised to hear that.

There is a new rating scale for augmentation, but they didn't give it to us. I think it may not be published yet. If anyone finds it or hears of it, please post about it. Their definition of augmentation is that there is
A. A shorter time for provocation
B. Length of rest shortens before it will start
C. Earlier onset

He said that when higher doses are needed suddenly, it is usually augmentation. But there was some debate about this. It appears that it is hard for them to determine. Because of this, Dr Allen suggested that anyone experiencing worsened symptoms who is taking a DA should go through withdrawal from the DA for a week or so. Then it could be determined if the cause of the worsened RLS is actually augmentation, or because the RLS itself has worsened. He didn't recommend switching to another drug immediately, or to a different DA, as I have heard other doctors recommend.

This makes sense, but would be terribly hard to go through. Stopping a DA that is causing augmentation is very difficult and many people will not go through it willingly. When you stop it, the RLS intensifies for three to seven days before going back to regular levels. I talked privately to Dr Allen about this, and he seemed to think that it could even continue to decrease for a month or more after stopping it, but within a couple of months, the level would have evened out and you wouldn't see any more decrease.

They also had a formula. If there is a rapid progression of RLS, you should:
A. check for GI issues that could cause poor iron uptake (bleeding, Celiac, etc.)
B. Ensure no antihistimines are being taken
C. If no to both, then assume it is augmentation

He also said something about meds, like some antihistimines or dopamine antagonists, that cross the blood/brain barrier. These types of meds often cause problems for people with RLS. He said to check with your doctor before taking any meds that cross the blood/brain barrier. That is why the newer antihistimines are unlikely to cause problems - they do not cross this barrier.

Because of augmentation, Sinemet should ONLY be prescribed PRN and taken no more than 3 times a week. PRN stands for as needed. So this drug should never be taken daily by anyone. This eliminates problems of augmentation, as rates are 50-80% (different studies have found different rates).

I think that is it.