GRRRRRRRRR I HATE LE..........
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Christine, I tend to look up herbs on the Sloan Kettering site, and while the horse chestnut info looked good, they said the FDA considered it unsafe--there was interest in coumarins for LE, and they were considered toxic to the liver--bummer.
http://www.mskcc.org/mskcc/html/69256.cfm
Scientific Name
Aesculus hippocastanum
Common Name
Chestnut, marron europeen, escine, aescin
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Brand Name
VenastatTM
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Clinical Summary
Horse chestnut, a tree native to the Balkan peninsula, has been used in traditional medicine for centuries. The seed extract is a popular dietary supplement used to support vascular functions. Horse chestnut should not be confused with sweet chestnut.
Escin, also known as Aescin, a natural mixture of triterpenoid saponins isolated from the seed of the horse chestnut and the major active principle, was shown to have anti-inflammatory (1), neuroprotective (1), and antitumor effects (2) (3). Data from clinical trials suggest efficacy of horse chestnut seed extract against chronic venous insufficiency (CVI) (4) (5). Conclusions from systematic reviews and meta analysis state that horse chestnut extract is a safe and well tolerated treatment for CVI (6) (7) (8). More research is needed to determine effectiveness of horse chestnut for other indications.
Patients with compromised renal or hepatic function should not consume horse chestnut products.
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Purported uses
Circulatory disorders
Diarrhea
Hemorrhoids
Phlebitis
Varicose veins
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Constituents
Coumarins: Aesculetin, fraxin, scopolin
Flavonoids: Flavonol (kaempferol, quercetin) glycosides including astragalin, isoquercetrin, rutin, and leucocyanidin
Saponins: Several saponins collectively referred to as aescin
Tannins
Other constituents: Allantoin, amino acids, choline, citric acid, phytosterol
(9)
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Mechanism of Action
Anti-inflammatory actions have been documented for the saponins (aescin). Aescin reduces transcapillary filtration of water and protein and increases venous tone by increasing the vasoconstrictor, prostaglandin F2 alpha. It stabilizes cholesterol-containing membranes of lysosomes and limits the release of enzymes, which is typically increased in chronic pathologic conditions of the vein. It also improves vascular resistance and aids toning of vein walls (10). The triterpene glycosides and steroid saponins decrease venous capillary permeability and appear to have a tonic effect on the circulatory system (11) while aesculetin (esculin), a hydroxycoumarin, may increase bleeding time.
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Pharmacokinetics
Orally administered aescin has an absorption half-life of about 1 hour and an elimination half-life of about 20 hours.
(12)
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Warnings
Horse chestnut seed is classified by the FDA as an unsafe herb. Many of the constituents are considered toxic, such as the glycosides and the saponins.
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Contraindications
Should not be consumed by patients with hepatic or renal insufficiency.
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Adverse Reactions
Common: GI upset, nausea, and vomiting
Toxicity: (Chestnut poisoning) Diarrhea, muscle twitching, dilated pupils, depression, and paralysis
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Herb-Drug Interactions
Anticoagulants / Antiplatelets: Horse chestnet may have an additive anticoagulant effect due to aesculin, a hydroxycoumarin.
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Lab Interactions
May prolong APTT, PTT, INR
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Literature Summary and Critique
Pittler MH, et al. Horse-chestnut seed extract for chronic venous insufficiency. A criteria-based systematic review. Arch Dermatol 1998;134:1356-60.
A criteria-based systematic review of double-blind, randomized, controlled trials of oral horse chestnut extract for patients with chronic venous insufficiency. Thirteen studies (8 placebo-controlled) with a total of 1083 patients were reviewed. Trial length ranged from 4 to 12 weeks with a total of 63 dropouts. Use of horse chestnut seed extract was associated with a statistically significant decrease in lower-leg volume and reduction of leg circumference at the calf and ankle as compared to placebo. Symptoms such as leg pain, pruritus, fatigue, and tenseness were also reduced. Adverse effects were mild and comparable to placebo. It was the author's conclusion that short-term, symptomatic use of horse chestnut appears to be safe, but long-term studies are necessary.Diehm C, et al. Comparison of leg compression stocking and oral horse-chestnut seed extract therapy in patients with chronic venous insufficiency. Lancet 1996;347:292-4.
Comparison of therapies in 240 patients with chronic venous insufficiency. Patients were treated over a period of 12 weeks in a randomized, partially blinded, placebo-controlled, parallel study design. Lower leg volume of the more severely affected limb decreased on average by 43.8 ml with horse chestnut and 46.7 ml with compression therapy, while it increased by 9.8 ml with placebo after 12 weeks of therapy. These results indicate that compression stocking therapy and horse chestnut therapy are alternative therapies for the effective treatment of patients with edema resulting from chronic venous insufficiency.
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ReferencesZhang L, Fu F, Zhang X et al. Escin attenuates cognitive deficits and hippocampal injury after transient global cerebral ischemia in mice via regulating certain inflammatory genes. Neurochem Int. 2010 May 11. [Epub ahead of print]
Zhou XY, Fu FH, Li Z, et al. Escin, a natural mixture of triterpene saponins, exhibits antitumor activity against hepatocellular carcinoma. Planta Med. 2009 Dec;75(15):1580-5.
Harikumar KB, Sung B, Pandey MK, et al. Escin, a pentacyclic triterpene, chemosensitizes human tumor cells through inhibition of nuclear factor-kappaB signaling pathway. Mol Pharmacol. 2010 May;77(5):818-27.
Diehm C, Trampisch HJ, Lange S, Schmidt C. Comparison of leg compression stocking and oral horse-chestnut seed extract therapy in patients with chronic venous insufficiency. Lancet 1996;347:292-4.
Diehm C, Vollbrecht D, Amendt K, Comberg HU. Medical edema protection--clinical benefit in patients with chronic deep vein incompetence. A placebo controlled double blind study. Vasa 1992;21:188-92. Vasa 1992;21:188-92.
Siebert U, Brach M, Sroczynski G, Berla K. Efficacy, routine effectiveness, and safety of horsechestnut seed extract in the treatment of chronic venous insufficiency. A meta-analysis of randomized controlled trials and large observational studies. Int Angiol. 2002 Dec;21(4):305-15.
Pittler MH, et al. Horse-chestnut seed extract for chronic venous insufficiency. A criteria-based systematic review. Arch Dermatol 1998;134:1356-60.
Pittler MH, Ernst E. Horse chestnut seed extract for chronic venous insufficiency. Cochrane Database Syst Rev. 2006 Jan 25;(1):CD003230. Review.
Barnes J, Anderson LA, Phillipson JD. Herbal Medicines: A Guide for Health-Care Professionals. London: Pharmaceutical Press; 1996.
Fetrow CW, Avila JR. Professional's Handbook of Complementary and Alternative Medicines. Philadelphia: Springjouse; 1999.
Brinker F. Herb Contraindications and Drug Interactions, 2nd ed. Sandy (OR): Eclectic Med. Publications; 1998.
Schulz V, et al. Rational Phytotherapy: A Physician's Guide to Herbal Medicine, 3rd ed. Berlin (Germany): Springer; 1998.
Morrison D. Boehringer-Ingelheim Product Information VenastatTM2001.top
Last Updated: Jul. 14, 20100 -
Christine, Binney found this Swedish LE group on Facebook (she has a google alert and it came up) and there was an NLN article from 1996 supporting horse chestnut from the NLN.
I'm sure more information has surfaced since this article, and I would urge caution--but it seems to me the FDA concern with horse chestnut is bleeding, liver and kidney toxicity
http://www.uhealth.net/article2.htm
This is a discussion from lymphedemapeople, moderated by Pat O'Connor--who's brilliant--and he doesn't support it
http://asshat.lymphedemapeople.com/phpBB3/viewtopic.php?f=8&t=825
And the most recent NLN position paper on treatment says:
Natural Supplements
There is limited evidence from rigorously‐designed studies on the use of natural
supplements for lymphedema. Studies have indicated American horse chestnut may
help venous edema but not lymphedema.124 Selenium has been reported to improve
lymphedema in head and neck cancer.125,126 Bromelain, a substance found in pineapple,
has anti‐inflammatory, anticoagulant, enzymatic, and diuretic effects. Some have
wondered if there might be a benefit for bromelain use with lymphedema, but it has not
been studied for use specifically for lymphedema.127‐132http://www.lymphnet.org/pdfDocs/nlntreatment.pdf
More than you ever wanted to know, right?
Kira
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I've had LE for almost a year now. I went to therphy until my insurance decided they won't cover it any more. I wrapped and wrapped until I was so tired of wrapping and looking like the michelin man I could scream! I've almost given up on sleeves! I'm sick of people staring and asking poor baby what did you do to your arm? If they've never had cancer or don't know someone who has they HAVE NO CLUE!
I'm so happy I'm cancer free but LE makes me want to just give up and crawl under a rock some days. I too would rather do chemo all over than to have LE!
I'm sick of people telling me how lucky I am. How brave! You made it through! You're my hero!
I PRAY they find a cure for cancerso nobody will have to have LE!
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Still am wrapped so typing should be interesting. Wow I am so glad I returned to this site. Just went through many pages on this thread and my heart swelled (a good thing). The other day I was moaning and groaning about my plight and the person I was talking to said "Look, this is the way life is sometimes. Accept it." At that moment I understood why people can be driven to commit murder. Instead, I said back to her. "Oh really, well your wrinkly face is just the way life is, so accept it instead of spending thousands of dollars for Botox." We're still friends. At my swollen arm's length.
With this latest flare I had to insist that I get a referral to my LE therapist because I know what to do, after all. Medicare won't pay unless there's notable swelling, which there was but they stop paying as soon as measurable differences can't be noted, so now I'm done, My LE therapist said that if it helped me feel better, I could come in once a month to be measured. It doesn't take that long and she won't bill me or Medicare. If I'm having a flare then she'll call the dr for a referral. Just her SAYING that made me feel better. I don't think I'll have to go every month, but maybe every three. What a wonderful person she is. And I learned that I'll FEEL the flare before I see it and to wrap at that point to stop it in its tracks.
Here comes summer when I HATE this thing with a passion. Gardening is next to impossible for me and it's something I love to do. Or used to love to do. Cooking has been hard with the hand swelling. Well, you know how it is. And that's why I came back. To find fellowship with those in the know. To get advice, to bitch, to laugh with all of you. My sisters, my friends.
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Sherry, when Binney was quoted in the Washington Post--she called LE--"Cancer's dirty little secret", and that quote has been used widely.
LE sucks, it rots, it's a constant hassle and reminder that we can't move on, we have to deal with the chronic illness that resulted from our cancer treatment, and all too often we're told to "Suck it up: at least you're alive." Do we ask people with other diseases to suck it up?
There's a link to emotional coping by Pat O'Connor who has lived with LE most of his life--it's all about grief and coming to some acceptance.
http://www.stepup-speakout.org/patoconnorcopng.htm
The frustration and constant grind of LE can wear you down. And no, people have no clue--when we wrote the page for providers on stepup--this was in the final paragraph:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
Lymphedema is a disease of abandonment and misunderstanding. It is NOT just swelling; it is derangement of the lymphatic system, derangement of connective tissue, progressive disability and impaired lymphatic functioning. It is a dreaded complication for very good reasons.
(fax that page, along with the NLN guidelines for treatment off to your insurance company when you ask for more treatment--that you deserve. http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm)
Only other people who've walked in your shoes, or wrapped your wraps will understand completely, And as spunky Kane said--some need to be put at the end of your wrapped arm.
It sounds like your LE didn't have a great response to treatment, please consider going to another therapist, or getting a re-evaluation. I went through 5 PT's before I found someone good--and she's an LMT. You deserve treatment for this, and insurance has to cover it if you're not under control.
Hang in there. We're right here with you.
KIra
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Wow! I knew I asked the right people! Thank you all so much, Dawne-Hope, Kira and Jo5, you all are great! I will talk it over with my dr and see what he has to say. Hang in there ladies, and have a good day!
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Sherry, I hear you. I feel exactly the same way. Would rather go through chemo again than have this. I always said I was so lucky that at least I had an acute disease and not a chronic one...I could do the treatments and then been done (okay, to a point) but having LE has now put me in the chronic category. Yuck!
I'm still patient with people who ask about my arm. It's always been people like at the dentist's office or contractors working at our house, people I have some sort of relationship with, not strangers. The only one in that category was an older gentleman at the gym, just making conversation. Usually people are just expressing their concern but I can see that it may start to bug me in the future. It doesn't upset me but it's a reminder that I look "different".
I just want my life back to normal, whatever that is.
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Tomorrow night at the local bc survivor meeting the local LE therapist are coming in. I will ask them if they can order me another gauntlet since it has been almost a year since I bought mine (didn't wear it for several months). I will also ask them about some swelling I have noticed on the side of my wrist that wasn't there before.
Also, I found a new way to make brownies. In a cupcake pan with papers and peanut butter chips in the middle! I saw it on Paula Deen's show. They are wonderful.
Sheila
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Those brownies sound good. Could you use regular peanut butter as well do you think?
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I don't know about using regular peanut butter, the chips add texture to the muffins. The first time I made them I had white chocolate chips in the cubard that I put in instead of the peanut chips. After they come out of the oven, you can also sprinkle a few chips on top to lightly melt on. I am making some of them for the meeting tomorrow night
. When I looked online to get the actual directions, several comments were not good because it was made from a mix and just added the chips, they expected more from Paula Deen.Directions, use favorite brownie mix and mix as directed for cake-like brownies. preheat oven to 350, using muffin papers in muffin cups, put 1 tablespoon batter in bottom of cup, sprinkle with chips, put another tablespoon batter on top and gently spread to edge. bake for 18 - 20 minutes. sprinkle a few more chips on top and remove brownies from pan immediately and cool on wire rack.
Sheila
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I have read several women's experiences with the horse chestnut, and after using it faithfully for a period of time, they said it did nothing for them.
The brownies sound awesome!!!!!!!!!!!!!!! HOWEVER, I am taking a page from Kane's book and trying to get some weight off. I'm hoping it will help my arm, which has been giving me some problems, is bigger, and is hurting.
I am going to be like Binney and aggressively work to get it back down...but the thought of it just getting bigger and bigger is kind of freaking me out today.
I hate LE so much.
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I just wanted to post about the brownies since Binney suggests it when we are having a bad day
. I too need to lose some weight, but brownies are so good once in a while.Sheila
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Sheila, I love Reese's peanut-butter cups. When Kira was here visiting she brought me dark chocolate ones from Trader Joe's -- genuine health food!
Your cupcakes sound like a similar taste sensation. (Do they come out of the papers easily, or are you reduced to gnawing and licking at the paper to get every last bit of goodness?
)Suzybelle, every time I flare I'm convinced that's it -- the swelling will never, never go away again. No amount of experience of bringing it back into control seems to help that panic, either.
So special hugs as you work your way through this one!Kane, any weight-loss secrets you'd care to share?
Horse chestnut is one of those LE "treatments" that was hailed not too long ago as a huge breakthrough and a real gift to lymphers. Australia led the charge of using and studying it, and though they initially got amazing results with it, they eventually saw considerable liver damage. Not a good trade-off.
This was not even very long ago, so you can still find studies on-line from the late 90s that seem to offer huge success with it, even though later discoveries (and the FDA) ruled it out as a safe option. The brief history of lymphedema treatment is unfortunately full of such misadventures, some of them deadly. We can't help but hope. We're vulnerable. It's so hard to be sane with this crummy condition!
Be well!
Binney0 -
I am going to try those brownies for a work meeting tomorrow. I just wanted to share that swimming (gently) seems to be good for my arm.
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Brownies are high in calories???????????????????
Leah
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Not if you put them in cupcake papers and add the peanut-butter chips, Leah.
Binney
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Well then I am doomed - I'm allergic to peanuts.
Unless mint extract has the same effect....
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Of course it has the same effect! It's a vegetable, isn't it?
Binney
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Leah, I used white chocolate chips instead of peanut butter chips
and they were delicious! you could probably even use butterscotch chips.Binney, the first batch I did, I sprayed the papers with pam and they didn't stick much. I spray the papers when I am doing muffins so they don't stick, I figured it wouldn't hurt the brownies.
Sheila
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well, ladies, just checking in, after just reading for some time. i check the site everyday, though..al the helpful hints you guys have help tremendously!!
my LE is as it is. controllable, if im vigalant, and for that, im grateful... i find getting in the pool helps alot. i even got those webbed fingered gloves, and use them to gently push the water with my le hand. that seems to help..
my therapsist is now gonna let me go for awhile, we've really got a repertorirSP of things i can do.
ive also purchased the bi lateral sleeve from lym sleeve co. i love it, got the "wave" one. its hard to get on, though, i need more practice!!! Kira: thanks for that article about "positive" thinking, its a sore spot for me... so glad to see it in print!!!! 3jays
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Im still trying to get another bra....working with one harness is not enuf...no one seems to make the kind i need.the one i have is discontinued...can someone tell me how do you work with 1 bra and wear it 24/7??????any suggestions?????its a long line compression bra,snaps down the front,wide straps that are adjustable with a wide elastic bad.i wasked that heavy thing this morning and now i have the fan blowing on it hoping it will dry sometimes soon....I dont have a car so i cannot get measured but the one i have is a large altho i wear a 34DD.thanks.huggggggggs K0
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Just back from LDM and my therapist showed me quite a trick to get the sleeves on, you guys probably know this already but just in case... If you wear a rubber kitchen glove on the hand putting the sleeve on it grabs it and moves it very easily! It made a huge difference. Anyway, she said you need to use them in water a good bit to get the powder residue off of them and the they grip great!
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HELP! My arm has been so painful for the past few days and I am noticing some swelling in my wrist and upper arm. I just know this is LE coming on. Is there anyway to stop it before it happens? I called to try to get a referral to my LE massage therapist but they are moving at a snails pace. I have a sleeve that I wear when I fly. Any advie would be so helpful!
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Heather, I havent been at this very long but wearing your sleeve sounds like a good idea to me. So sorry you are joining us. Hope you can get into a therapist soon!
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heather - I haven't been at it long either. I had to push to get referred in a timely manner. I was pretty pitiful and the nurse went out of her way to help. I have read that elevating the arm is good, you will learn the self massage. (((hugs to you))) The masters will come on soon and give some good advice!0
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while you are waiting for the masters to come on (and that they are) go to google and you can get some stretches and massages.go easy tho....and drink lots of water....im just learning myself but the masters have taught me sooo much.gentle huggggggs to you.
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Heather, hello!
I hear you on the frustration -- sure makes us feel panicky when we have to deal with this. But as you can tell by all the women who have already answered you, this is doable and you'll soon have the skills you need to stay on top of it.
You're right that quick action can make this all easier to handle on-going, and you're doing a great job of getting everything moving. While you wait for help from a well-trained lymphedema therapist, here are some tips for keeping things in control:
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waitingIf you have only a sleeve and no hand protection (either a compression glove or gauntlet), you'll be better off NOT wearing your sleeve right now, as it can trap fluid in your hand, where it's harder to deal with. Elevate your arm as much as possible (at night on pillows too), drink plenty of water, do some deep abdominal breathing several times throughout the day, and don't stress your arm for now until you get some help.
Gentle hugs to you, Heather -- tell us how we can help!
Binney0 -
Binney I've been looking thru the stepup site but haven't found the MLD directions. The LE that I went to did absolutely nada for me. Well he did measure me for a sleeve and gave me 10 pages of exercises that I might try but nothing hands on. I've been drinking the water as suggested and keeping my arm elevated - especially when I sleep. I did go out and buy more of the sports bras that I had been wearing right after surgery - they seem to help a lot because they're working similar to a compression bra (at least that's how they feel). The new fancy bras must have been pressing wrong on the side under my arm where the surgery for BC and LE were done. An under-wire is a thing of the past.....
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Not sure where to post this ... several of you have mentioned swimming ... are there specific things to do in the water that help more than others? Are there things we should NOT do? I'm not a great swimmer but I have access to a pool and I'm willing to do anything I can that will help.
So ... any exercsie tips for the water?
You all are so helpful! I've said this before ... but I'm afraid I would be crazy by now had it not been for you all!
hugs and brownies for everyone!
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