This summer has been a big one for lymphedema and lymphatic research news! Back in June we talked about the Stanford BioBridge study, where researchers found that surgically implanted nanofibers stimulated growth of new lymph vessels, bypassing lymph blockages and reducing swelling in affected limbs.
Now there’s a new study that has the potential to be just as much of a game-changer for lymphedema treatment, although this time by introducing a pharmacological option.
Researchers at Eiger BioPharmaceuticals have developed a drug called Ubenimex, which is currently being tested in patients diagnosed with secondary lymphedema. As explained via an article in Rare Disease Report:
The Ultra study is designed to assess the effectiveness of Ubenimex blocking the production of Leukotriene B4 (LTB4) … Leukotriene B4 (LTB4) is a naturally-occurring inflammatory substance known to be elevated in both preclinical models of secondary lymphedema as well as human lymphedema disease. Elevated LTB4 causes tissue inflammation and impaired lymphatic function. Targeted pharmacologic inhibition of LTB4 promotes lymphatic repair and reverses lymphedema disease in treated animals.
Ubenimex is an oral, small-molecule inhibitor of leukotriene A4 hydrolase, which regulates the production of leukotriene B4 (LTB4), an inflammatory mediator implicated in PAH. LTB4 is produced from leukocytes in response to inflammatory mediators and is able to induce the adhesion and activation of leukocytes on the endothelium, allowing them to bind to and cross it into the tissue.
I know—that was a lot of medical jargon!—but here’s how I understand it: Ubenimex works by blocking the production of Leuokotriene B4 (LTB4), a naturally-occurring inflammatory substance in the body that causes tissue inflammation and impaired lymphatic function when present in elevated amounts. By regulating the production of LTB4, the drug promotes lymphatic repair in patients with lymphedema and alleviates symptoms.
Currently, Eiger BioPharmaceuticals is testing the efficacy of Ubenimex as a pharmacologic inhibitor of LTB4 and a potential treatment option for lymphedema (they’re also evaluating Ubenimex in another Phase 2 study for the treatment of pulmonary arterial hypertension). They’ve designed a randomized, double-blind, placebo-controlled trial where forty patients diagnosed with lower-extremity secondary lymphedema will receive 150 mg of either Ubenimex or a placebo, administered three times a day over a period of six months.
Earlier this summer, Eiger BioPharmaceuticals kicked off the trial and dosed their first patient with Ubenimex. Hooray! The trial is estimated to run until November 2017, so we’ve got a ways to go before hearing any finalized results. Still—it’s super exciting!
You know what they say: good things come to those who wait. There’s so much amazing lymphatic research going on that we’re due for some good news soon enough, and I’m excited to see what these studies and trials will yield. Who knows—we may have some new treatment options available in the not-so-distant future!
In a heartbeat!! (I guess I would want to know side effects, though…)
Hi, Mary Ellen,
The study is in full swing! If you’re interested in participating, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
I would not take the drugs, but I would go for the nanofiber solution. There are side effects on all drugs (the average number of side effects is 70), so I choose not to take any.
Does it work on primary? If so, and it seems safe, yes I’d take it!
I live in the UK but I would love to try it
I live in the UK. Can I still participate?
I’m subscribed to your blog in the hopes that I will find resources and information on Primary LE. Your blog has very little that’s relates to Primary LE. Can you spend some of your blog on Primary LE?
Sincerely,
William Hammond whamm511@yahoo.com (810) 964-8898 Cell/Text Sent from my iPhone
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Hi, William,
Most of my blog refers to lymphedema in general—both primary and secondary—unless otherwise specified. If there are any topics you’d like explored or addressed, do let me know and I will try to do some research and write about them. However, I’m no doctor, so if you have any specific questions you’re seeking answers to, you should check with your lymphedema therapist or medical professional.
In regards to lymphedema and lymphatic research news, you’re right—there is definitely a lack of information on primary lymphedema. Most research on lymphedema is focused on secondary LE, my guess is because most cases of secondary LE are a direct result of cancer treatments and thus secondary LE receives research funding and scientific attention through its direct relationship to cancer. It can feel unbalanced to those with primary LE, and the lack of research (and answers) is frustrating. I also have primary LE, so I totally understand. However, I think a lot of this research could open doors for future studies and trials on those affected by primary lymphedema by building awareness within the medical and scientific communities. It’s a slow crawl, but we’ll get there!
Best of luck and be well,
Alexa
Absolutely yes I would!
Hi, Rebekah,
The study is in full swing! If you’re interested in participating in the trial, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
YES! I am excited about the possibility of treatment I would be so excited!
Hi, Melanie,
Love your enthusiasm! I’m excited, too :) If you’re interested in participating in the study, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
Yes definitely. Anything to get some relief from this chronic condition.
Hi, Lisa,
I feel ya! If you’re interested in participating in the study, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
I would certainly want to try this medication. Knowing the risk of potential side effects would all me to balance the win/lose equation. Honestly, I’m afraid I would be willing to gamble nearly anything to get relief.
Hi, Jan,
I understand the willingness to gamble for the sake of finding relief. If you’re interested in participating in the study at all, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
YES!!!, Even if it alleviated half my symptoms, it would be worth it. I have bilateral lower extremity Lymph edema; I work on my feet all day. It is painful to even use the pumps sometimes. Unfortunately, even if, when this drug is made available, my insurance would deny, just as they did the more advance pumps my Onc. and Lymph edema therapist wanted for me. :(
Hi, Dawn,
My heart goes out to you!! :( If you’re interested in participating in the study, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
Without a doubt!!!!!! This would be an answered prayer!
Hi, Kris,
Wouldn’t it!? I’ve got big hopes for this one. If you’re interested in participating in the study, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
I would take it if I knew the side effects… I would check on nanofiber solution…
Hi, Penny,
Yes, I think knowing side effects would be a big determining factor for a lot of us! If you’re interested in participating in the study, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
Absolutely :)
Hi, Buffy,
Awesome! If you’re interested in participating in the study, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
Yes I would try it
Hi, Noreen,
If you’re interested in participating in the study, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
As a PhD Research Scientist and someone how has primary lymphedema, I am extremely interested in the outcome of this study! I am super thrilled that there is more lymphatic research taking place, and once I learn the results for this research, I will be able to better determine if it would work for primary lymphedema, and if I am suitable candidate! Please keep us informed – you are doing a phenomenal job of getting information to our community.
Hi, Shameika,
I’ve been in contact with EigerBio and they’re currently recruiting participants! Us primary lymphies aren’t eligible unfortunately, but since you’re a research scientist, you might be interested in checking out their website for more info on the study: https://www.eigerle.com
(I’ve also got an upcoming blog post in the works with an update on the study, so stay tuned!)
Thanks for being a reader :)
Be well,
Alexa
I would take the drug In a heart beat. Bring it on. PLEASSEEEE
Thank you very much. God Bless
Hi, John,
I’m right there with ya!! If you’re interested in participating in the study, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
I have lymphedema in both legs due to cancer surgery. All of the lymph nodes were removed and as a result, both of my legs have been affected. I would most certainly take this drug to try and lessen the pain, swelling, and discoloration. My problem is that Medicare does NOT cover ANY treatment for this disease. I’m disabled with other health problems and only have Medicare and Medicaid.
Kathleen, I was able to get Medicare to cover a FlexiTouch System for my right leg (Primary). The people at Tactile Systems (FlexiTouch) did most of the leg work on this and my doctor wrote a good letter. Medicare denied it first time, but approved it when resubmitted. I did have to pay an amount to Tactile Systems.
I read a comment on the LEARN Facebook page that soon there will be a similar trial for primary lymphedema (with same drug). Personally as a person with primary lymphedema I would prefer the drug treatment over the Biobridge. I know every drug has side effects but a surgery has it too. Especially the node transfer in the Biobridge case makes me worry for donor site lymphedema. As a person with few lymph node over the whole body it is risky to move them around with surgery. But off course when there would be a good chance of improvement I would certainly take that risk too.
I never take drugs and I am not pro drug treatment because of side effects. But having lymphedema has many !!! side effects (on my social, psychological, financial, energy, … life). It has risks too in having sudden infections ( and the need to take antibiotica). Possible side effects of a drugs that can take the side effects and the risks of having lymphedema away would be a dream come true… Finger’s crossed that we will benefit from it (soon :) ). Thanks for posting!
Trying everything. Did SAPL surgery and hoping for more good things. Did a drug trial with Dr. Rockson in Stanford a few years back but didn’t work on me. http://www.LymphedemaSucks.com
I would like to know the side effects. But if it would help I would take it!
Hi, Anita,
I agree – side effects would be a major deciding factor for me, too! If you’re interested in participating in the study, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
ABSOLUTELY, I would take the pill (assuming it is safe, of course). The pump, the wraps (not to mention, the ugly post-op shoes when my feet are wrapped), the compression stockings, the kinetic tape and going to therapy… it’s all so very tiring; I would be extremely grateful to be relieved of all that.
I totally understand!! A pill probably wouldn’t eliminate the need for compression, but it would make managing symptoms so much easier. If you’re interested in participating in the study, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
Yes, I would be willing to try it.
Hi, Mia,
If you’re interested in participating in the study, they’re currently recruiting participants! Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
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Yes! It would be a great relief, willing to try it, although potential side effects are a major factor for me too, as others have noted as well. Thanks for keeping us informed!!
Hey! If you’re interested in participating in the study, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
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I would love to know the results of this study! I’ve just been diagnosed with primary lymphedema after having swollen lower extremities for over 15 years!! I’m now 50 years old and would love to have something to help other than the bandaging and compression garments that I now have to do.
Isn’t it exciting?! I’ll definitely be keeping my eye out when the results are published and will share them on the blog. I think we have to wait a while for them to complete the study but good things come to those who wait… like new treatment options! ;)
Yes, i’ll go for it
Hi, Gururajan,
If you’re interested in participating in the study, they’re currently recruiting participants! Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
I have primary lymphedema in both legs for 15 years. Nothing has been effective and living with this is a constant struggle. YES, I am interested in learning more about ANYTHING that would help me. jc
Yes i would take it if it means i dont half to wear the foam and tones of bandages which make me feel useless.
Hi, Nyx,
I feel ya!! If you’re interested in participating in the study, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
Yes I would take it if it becomes approved. I have secondary leg lymphedema due to ovarian cancer. I hope it soon becomes available n that it works😊
Hi, Sandra,
I’m hopeful, too!! If you’re interested in participating in the study, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
I recently had the opportunity to interview one of the doctors involved in the study, so I’ve also got an upcoming post in the works with an update — stay tuned!
Be well,
Alexa
In a nano second! I would try anything that could possibly help. Go researchers!
Hi, Lorraine,
If you’re interested in participating in the study, they’re currently recruiting participants! Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
Why would this only treat secondary and not primary?
Hi, Marjorie,
I’m not sure from a physiological standpoint if this would only treat secondary lymphedema; I think the distinction is made between the two not so much because the drug will treat one and not the other, but rather because most research on lymphedema is specifically focused on secondary LE. (My guess is because most cases of secondary LE are a direct result of cancer treatments and thus secondary LE receives research funding & scientific attention through its direct relationship to cancer.)
It can feel unbalanced to those with primary LE — I have primary LE myself, and definitely get frustrated by the lack of specific research. However, I think a lot of this research could open doors for future studies and trials on those affected by primary lymphedema by building awareness within the medical and scientific communities. At the very least, the testing and studies will maybe “trickle down” to us primaries after being proven effective on patients with secondary. It’s a slow crawl, but we’ll get there!
Be well,
Alexa
Yes I would take the medication. I want to be able to walk properly again, even a small decrease in the size of my leg would make a huge difference to my ability to get around and therefore to my life.
Hi, Alexandra,
If you’re interested in participating in the study, they’re currently recruiting participants! Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
Yes, I would be interested in taking the drug to help reduce some of this swelling. I have secondary lymphedema.
Hi, Eureka,
If you’re interested in participating in the study, they’re currently recruiting participants! Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
Yes most definitely I would try the drug.
Lived with primary since twenties .
My mum has it.
Very depressing condition .
Can’t wait till they find something that can help?
ABSOLUTELY! I look forward to the results of the study. I hope and pray it works, and it becomes available sooner than later.
Hi, LuAnn,
If you’re interested in participating in the study, they’re currently recruiting participants! Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
Yes I would. Wouldn’t even think twice. A normal life would be a relief.
Hi, Michael,
If you’re interested in participating in the study, they’re currently recruiting participants! Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
In a heartbeat!
Hi, LuAnn,
If you’re interested in participating in the study, they’re currently recruiting participants! Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
After learning about possible side effects and evaluating the risk, I would definitely welcome this treatment. I have secondary lymphedema from a surgery in 2004. It is a struggle and heartbreak every day. A treatment is a God send.
Hi, Melanie,
A treatment like this would definitely answer a chorus of prayers from our community! If you’re interested in participating in the study, they’re currently recruiting participants. Visit https://www.eigerle.com to learn more about the research study, determine if you’re eligible, and get contact information for the study centers.
Be well,
Alexa
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I would like to try this new medicine, but I live in israel??
I would take it in a heartbeat. Do we know when the trial will end and possibility of getting this drug on the market in USA?
Yes I would take it
Yes, I have primary full body lymphedema and I would love to try it. I am 63, not diagnosed till 61….
I’m in contact with the study coordinator and hoping to begin participating in just a couple of months! I developed primary lymphedema of my right leg last year, and completed CDT last fall. While that decreased the pain and discomfort, it’s still a lot of work to keep up with massage, compression garments, appointments for measurements, dealing with insurance to see if they’ll cover garments (including night garments), and so many other things to keep track of every day. I am truly excited to be a part of a study that could help so many people suffering with lymphedema (many having a much more severe case than me).
I want to thank you for sharing this information on your blog – if I hadn’t seen the information about the online study screener here, I would never have known that it was happening, or been able to give them my info as a potential participant! ❤️
Having secondary lymphedema in lower extremity is not the worst thing that can happen but certainly has changed life. Dresses, shorts, swimming are all gone. Pant size now determined by calf size. Few shoes fit. Kneeling while doing yard work is difficult as calf size does not allow knee to flex fully. Same happens when climbing up ladder. Hot weather seems to make situation even worse. If Ubenimex is determined to be effective, it will likely be years before medication is available. But there are greater difficulties some folks have to deal with…