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Welcome to all our family and friends. Patients, families, caregivers, therapists, nurses, doctors, anyone with a concern for and interest in lymphedema is most welcome!!!

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New to the Site

Postby Northern Michigan Girl » Thu Aug 03, 2006 11:57 pm

I found this site while surfing, gotta love Google!
Hoping to find new information for controling my Lymphedema. After two staph infections in my feet within a year and being hospitizalized,
I was diagnosed with primary Lymphedema in both lower legs at the Childrens Hospital in Ann Arbor, MI when I was 12. (I'm 38.) They did that terrible procedure where they shot dye between my toes, and made cuts on the tops of each of my feet (I'm convinced that this is why my feet get so swollen.) Anyway, at first I was fitted with pantyhose jobst, I refused to wear them, so uncomfortable. The LE wasn't that bad, I'd go to bed at night and my lower legs would be pretty normal by the a.m. I had a major infection in 1993, was hospitalized for 6 days, that pretty much was the turning point. My right leg gets pretty big (20 inches around at the calf, my left one maybe 16") I have had MLD and have the supplies to wrap every night. I had one doctor tell me that wrapping and wearing my support socks was up to me, if I could keep the infections away, then I'd be alright. For the last 5 years I've had problems with patches of excema on my legs and feet, and fungus infections. My dermatolgist helped get that under control, and this summer it is gone!
I'm just gonna complain a bit here and feel sorry for myself. I get so sick of trying to find wide-leg pants that fit from the knee down, and I can't wear the cute summer flip flops or slip on shoes, or capri's. It takes forever for me to wrap at night, I don't do it religiously, this summer I've been skipping it a lot! I'm lucky that there is a LE support group at the regional hospital only 30 minutes away. Everyone there is a cancer survivor, there is no one there with primary Lymphedema.
What's this pill I read about in the UK that breaks down proteins in the Lymph fluid? Does anyone know where I can read more about this? What is it called? What do the LE experts think? Kinda sounds too good to be true.
Thanks for letting my tell my story.
Northern Michigan Girl
 
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Postby patoco » Fri Aug 04, 2006 1:14 am

Hi Michigan Girl :)

I haven't heard of that pill before. Do you know what it is called???

Would really like to do some research on that...kind of sets off all kinds of warning bells on its safety and what it might do to you.

One thing for sure, here and in our support groups you'll find more primaries then you can imagine.

Thanks for sharing with u. BTW...I too have primary lymphedema, born with it in 1952...was actualyl diagnosed in 1959...LOL...ok...so I am an "antiquarian" lympher.

Look forward to getting to know you and in your participation! :!: :wink:

Pat
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primary LE

Postby georgy » Fri Aug 04, 2006 6:46 am

Well,
How do you like them apples? I was diagnosed with primary LE 4 years ago and I am 51. I just thought it was the heat. Like I said in my first posting I had never heard of any type of le until then. I am a teacher and my legs swell whether I am sitting or standing and they swell whether they are wrapped or not (not as bad though). I tried the stockings but they take to long to get on and I would rather have that few minutes of sleep. Sigh it is tiresome. I havent heard of any pill and this is the first forum that I have joined. :D
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Postby silkie » Wed Aug 09, 2006 2:58 am

Hi everyone

There is a pill my head is like a sieve We were talking in lipedema about it

I don't know if anyone has tried it I dont even know if its thru the human testing thing I do know its notpassed the drugs board in the usa as yet



or how it works

Will get back to you
my pc is being a pain cant do more than one thing at a time

huggggggggggggg

Silks xxxx
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Postby joyous » Wed Aug 09, 2006 1:12 pm

Hi Everyone - I gets swollen legs and feet weather I stand or sit and years all I could wear is sneaker but this year at work :lol: I am wearing flip flops and I wear shorts and my legs don't seem to be that swollen any more. now since I said that - they will probably swell

8) 8) :mrgreen: welcome to our site.


Joy
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Postby Northern Michigan Girl » Thu Aug 10, 2006 4:22 pm

Thanks for your responses, It's nice to have someone else know what it means to have LE.
I found some info on that "pill" I was talking about:
Benzopyrones, such as Coumarin and Hydroxyethylrutin and flavonoid derivatives such as Diosmin have been tested in research studies.33-37 The United States and Australia abandoned the use of oral Coumarin due to liver toxicity and inconsistent efficacy.36 Trials with hydroxyethylrutin demonstrate improved skin softening. Daflon 500 (a combination of Diosmin and Hesperidin) is used widely in the equatorial regions of the world to treat LE. The benefit appears to result from the reduction of microvascular permeability38,39 and increased thoracic duct pumping.40 However, these mechanism

And here's some other info I found:

Q: I recently ran across an article that mentioned the medication "Daflon" in the treatment of lymphedema. I am always searching for new information and have never heard of this. Can you tell me a little about this medication and how it is used?
A: Daflon has been used for varicose veins and other conditions, and is available in many countries. It works much the same way as the benzopyrones, i.e. by enhancing the macrophage activity and increasing the numbers (this has been well established in experimental models).
Daflon has been successfully tested in clinical trials for the treatment of lymph-edema, but optimal dosages are still undecided. At this point in the trials, the higher dose has been more successful. (Pecking [France]; Ciucci [Argentina]) We think that probably the dose should be at least 2gm per day, but 900mg taken cautiously should help. I suggest you contact Servier Laboratories, the manufacturer, directly for further info. Director of Research, Institut de Recherches Internationales Servier (I.R.I.S.) 6, Place des Pleiades - 92415 Courbevoie Cedex FRANCE. Tel: (33 1) 46 41 60 00. email: lerond@servier.fr.

And finally this info from the manufacturer of the drug:
Lymphatics
DAFLON 500 mg improves lymphatic drainage by increasing the frequency and intensity of lymphatic contractions, and by increasing the total number of functional lymphatic capillaries. Furthermore, DAFLON 500 mg decreases the diameter of lymphatic capillaries and the intralymphatic pressure (9,10)

I think this drug is used in the U.K. and France to treat LE....probably no funding in the U.S. to do a trial study and get the FDA to approve it.
Until then, keep wrapping!
Northern Michigan Girl
 
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Postby patoco » Thu Aug 10, 2006 4:30 pm

Hey Michigan :)

Look under the Treatments forum for our page on Daflon 500.

The reality is (from clinical studies) that the use of Daflon for 2ndary lymphedema is still rather sketchy and and at best the verdict is that it may help. More studies are needed.

As far as primary lymphedema goes, there are no clinicals out there that say it works.

Take a look at the page and see what ya think.

Pat
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