I'm reading about LDN (Low Dose Naltrexone) and it looks like it's a lowkey drug that has helped people with all kinds of diseases running the gamut from HIV to cancer to Crone's disease and fibromyalgia. There's a mention of helping with lymphedema but I haven't seen any feedback from a person who has had it.
I have lymphedema in my left leg that occured 4 years after surgery for cervical cancer. I've had it for a year.
Has anyone out there tried LDN for lymphedema caused by removal of lymph nodes?
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AshForever
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Try asking the question on the US site lymphedemapeople.com - or ask about drug trials on lymphnet.org - I’ve not heard of this drug being used here (UK)
The only drug to date that has no negative side effects that appears to positively intervene with disease progression of Lymphoedema is Ubenimex aka Bestatin. The current clinical trial (commenced early 2017) is ongoing, having started in the US (led by Dr Rockson at Stanford University) and Australia and will start late 2018 the UK. Currently Ubenimex is not yet available in the US or UK. In Japan it’s been safely used in cancer treatment for decades. A cousin of Ubenimex called Ketoprofin is used by some to manage LE symptoms however it has extremely negative side effects therefore not widely prescribed
Strange vision, severe stomach upset, skin rashes, headaches, feeling generally unwell. For long term use ie months and years it’s not practical to have the negative daily side effects in exchsnge for only minimal improvement in LE symptoms. There can also be long term damage to organs which I’m not keen to encounter. Contrarily, Ubenimex has no known side effects and proved successful at treating LE symptoms in laboratory studies and in humans during the pre-clinical trial completed ahead of ongoing trials which are in phase 2 in the US
Hi Ash,after hearing a few years back about LDN and how it has helped many people with a wide range of ailments,i decided to give it a go,hoping it would improve my many and various Chronic Fatigue Syndrome symptoms. I tried it for over a year with no improvements at all. At that time,i was unaware i had lipo/ lymphodema ( diagnosed summer 2017). ..i thought i just had rather fat and swollen knees and ankles. LDN didnt change them. But everybody is different,so it might be worth giving it a trial. I think its worth trying anything in the hopes of even slight improvements. I had to pay for it myself,but i cant recall how much it cost,and i had get my GPs permission to take it,if i remember correctly.
I know you have to get a prescription here in the US, or if you get it online without a prescription it comes in powder form & you have to make your own capsules.
I suppose if they were very effective for lymphedema we would all know about it.
Thanks for your response! I hope a cure is on the way for all of us.
I'm just about to complete the six month Ubenimex trial - I'm in Australia. Secondary lymphedema. Operation / Radiation in 2005, Onset in left leg 2008 and in right leg 2016.
Always hoping for a cure for this condition and figured I should be part of it. Am looking to see if anyone else has been on the trial and whether they've noticed an improvement / difference.
I would love to know about the results as well. How did your trial go? I heard half of this trial are placebo drugs.
I’m sorry to hear you have it in both legs. I hope Ubenimex works for you & all of us. I’m the US & I’m sure it will cost $$$ if it does. Pharmaceutical companies here like overcharging when they have a desperate market.
If anyone else has tried Ubenimex, please let us know your experience!
Thank u. I struggled with accepting that this hideous condition had “got”me with both legs, but what can u do? No point in “poor me-ing”for too long, because it changes nothing.
We won’t find out the results for quite some time. I have my last tests on Wednesday, and one of the tests is the injection w radio active due to see if there is anY lymph flow. I think they’re now gonna trial Ubenimex in the UK too. Read something about trialling there in 2018.
I hear ya with cost. Treatment anywhere is so expensive. I will source the darned drug if it is shown to work, but I don’t believe it is available here in Australia at the moment.
Here’s hoping we find a cure to both primary and secondary lymphedema. It freakin sucks!!! 😀
Thanks for sharing your story Samantha. Regarding not getting too caught up in feeling sorry for oneself-staying positive has a huge impact on quality of life. Sometimes I get caught up in the negative side of things-but then I have a friend in a wheelchair so I’ve seen other types of hell people go through in life & still stay positive.
I wish you well & please feel free to share any future results! I’d be interested to hear how well this medication works.
I too have a friend in a wheelchair. She became paraplegic as a result of a little known side effect of the radiation she had for cervical cancer😱😱😱. So bloody awful. I had my last appt on the trial this week and had all of the tests I had the first time. I did ask if any of the people on the trial in Sydney had shown great results. Unfortunately, nope. I think it will be quite a while before we hear about the results because there is going to be a trial in the UK too.
Btw, I haven’t noticed any real change. I think I’m either on the placebo, or it doesn’t work. Surely at some point, some really bright person will find a cure, tho the lymphatic system is a very complex system.
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