Any new treatments out there?: Hi, I was just wondering... - LSN

LSN

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Any new treatments out there?

huwboy profile image

Hi, I was just wondering if there were any new treatments out there for lymphedema? I read about some clinical trials of a drug called ketoprofen, but I wondered if any body knows of any other treatments or trials that are happening at the moment.

Best wishes.

16 Replies

There is research ongoing but no cure or safe and effective treatment by way of pharmaceutical. The long-standing gold standard daily treatments still apply eg therapeutic compression, lymph drainage, meticulous skin care, lymph moving exercises, and body movement such as swimming, walking, etc. Bear in mind that Ketoprofen is not viable as a long term treatment option due to side effects including severe organ damage. This is the warning from the lead researcher of the Ketoprofen study so use with great caution.

News about research in lymphoedema treatments can be found on The Lymphie Life website: thelymphielife.com

Maggymo profile image
Maggymo in reply to Perido

Thanks PeridoThat website is new to me and it looks very informative ! 👍

For what it's worth, I am NOT a medical professional, but used medical expertise to help me work out what would work for me - diary on aftercancers.com/my-lymphoe...

Perido profile image
Perido in reply to veriterc

I thought that diuretics are not appropriate for treating lymphoedema?

veriterc profile image
veriterc in reply to Perido

All I can say is I was given these by a very senior Consultant. If I forgot to take them I would notice my ankles in particular were more swollen. But ask a Doctor why I was prescribed these - I am not medically qualified and do what doctors tell me! And what worked for me might not work for another

Snup profile image
Snup in reply to veriterc

Well, dont trust the docs too much. Diuretics may help at the beginning but worsen your overall condition.

Loramay profile image
Loramay in reply to Snup

I have been on diuretic for more years than I can remember and they have always worked for me so sometimes doctor is right and my lymphoedema nurse was very impressed last time she saw me

Interesting - I'm o doctor, so wish I knew why diuretics worked for me - but you say it makes condition worse. It's a shame Lymphoedema is such a Cinderella condition in the NHS.

Perido profile image
Perido in reply to veriterc

Maybe there's something contributing to your swelling besides lymphoedema? Just a thought - I'm not a doctor either.

So true, your point about lymphoedema being a Cinderella condition. It doesn't seem right to me that most of us never get to see a lymphoedema specialist doctor - I have but only on a private basis.

You are so right - but when doctors diagnosed Lymhoedema that was that - no chance of further investigation, and it was left to me to get on with it - no support from any medics! It is a scandal that we are left on our own - but I suppose with the way things are today we are lucky to get anything! We just need to realise that we have to get on and sort things out ourselves. So whether my swelling was L. or not I just suppose it was because I was told it was!

StellaM profile image
StellaM in reply to veriterc

Hi veriterc,It sucks how little help there is out there. I’ve been given no practical advice/ treatments,just offered stockings. I try to be proactive,try things for myself,and tell my lymph nurse what I’m trying. She always looks surprised but these suggestions are easily found online!So far I’ve tried and continue to try various things.

Movements so important,so besides being as active as poss,and I follow low carb diet at least 80% of the time. I also..

Rebound

Use a vibroplate

Take Chinese herbs (but stopped buying Chinese herbs when lockdown happened,had to travel to the next city for them which cost £28 return trip every month,they were dear to buy as well…)then tried..

Burdock capsules

Waiting to buy something called Lymphstim when it comes back in stock,and sthing called Red Root

There’s an appliance you can get to get yr stockings on. It’s called a butler.

My nurse got one for me when I told her about it. It’s of limited use and quite fiddly,but better than nothing.

I’m looking into lymphatic reflexology,as I’m a great believer in how useful reflexology has been in improving my other health problems

All the things I’ve tried,somebody has reported swellings going down after using them.

Not been that lucky myself!😀

Anyone got more suggestions to add?xx

Perido profile image
Perido in reply to StellaM

In my experience the one best thing to control swelling are garments that fit well, are the correct compression strength and the best style for one. My swelling has been much better controlled since I switched from off the the shelf stockings to made to measure flat knit stockings. It took 3 goes to get the correct fit but worth the effort. I'm very grateful for the skill of a particular lymphoema nurse that measured me and prescribed the stocking I currently wear.

I also wear toe caps because I have lymphoedema in my foot as well as my leg; I tried a couple of different brands of toe caps and the second one I tried works much better for me than the first. Trial and error.

StellaM profile image
StellaM in reply to Perido

Hi Perido,you’re so right,trial and error! Also,I agree,flat knit well fitted stockings are the very best help of all. I can’t manage to get them on and off ( thigh length,both legs) even with help of a butler,as I have arthritis in my hands and little strength in my arms. ( That sounds like I have “ staff” 😀 but I mean the aid called a butler!)

Am wearing off the shelf ones and they’re better than nothing,but don’t do the same job at all. X

veriterc profile image
veriterc in reply to StellaM

Stella Well done you - by getting on with researching for yourself at least you know you are being looked after by an excellent medic! But it annoys me that the NHS just leaves us to sink or swim, and I fear it is going to get worse. If you are "in" to Reflexology, have you thought of trying MLD? LSN has the names of excellent practitioners around the UK, and I found it excellent (I did have genuine reflexology but that didn't do anything for my Lymphoedema). Also, what about investigating if there is a hydro pool you can access in a local hospital? At the worst, the warm water is soothing, and the exercise helped me.

StellaM profile image
StellaM in reply to veriterc

Good idea re MLD,thanks Veri,but I have a lymphatic reflexologist on my doorstep,plus a bit cheaper than MLD,so I’ll give it a go. X

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