Kathy: I have primary lymphodeama in my left leg and arm... - LSN

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Kathy

91049 profile image
22 Replies

I have primary lymphodeama in my left leg and arm,dose anybody suffer with itching skin ?

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91049
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22 Replies
Lynora profile image
Lynora

It can be a problem. Have you tried using a simple emollient to keep the skin moisturised and supply, such as E45 or Dibrobase? Aveeno Cream, which is based on oats, can be useful to help with the itch.

91049 profile image
91049 in reply toLynora

Thanks I will try what you recommend. I did have some cream from the doctor which I use daily but it's not helping.

Magpuss profile image
Magpuss

I have Doublebase Gel on prescription, it's very good and 'soaks' in quite quickly without leaving any stickiness or greasiness. Flexitol is also good but needs more rubbing in and can leave a slightly greasy feeling.

91049 profile image
91049 in reply toMagpuss

Thanks for your advice ,the gel sounds good as if things are to greasy it's a job toget my stocking on.

Magpuss profile image
Magpuss in reply to91049

Sorry, I forgot to add - the Gel isn't specifically for itchy skin but I find that I'm only troubled by that if I haven't moisturised often enough.

lithgorose profile image
lithgorose

Hi Kathy,

Sorry that you are suffering the dreaded lympho.....I suffer extreme itching of the skin on both legs (also with lymphodema). At times I am driven to distraction with the itch, I try running both wrists under the cold tap to reduce skin temperature,and use oral antihistamine tablets.

I hope these tips help,and you have a more comfortable evening. lithgorose x

91049 profile image
91049 in reply tolithgorose

It's so annoying it seems that the arm and leg get hot compared to my normal limbs. I will try this lets hope I can get a result thank you so much.

Kathy

I have lymphoedema in both legs and I use Aqueous Cream to combat the itch and dryness that happens at times

91049 profile image
91049 in reply to

I have tried that one not very successful with me

Dodidoos profile image
Dodidoos in reply to91049

Nor me I found out that aqueous is not recommended for LD I did use it once when first diagnosed but soon had probs with burning feeling so I changed it to Double base which I always have off my Doc as well as other potions depending on how the skin changes from time to time needing a change from the same creams is sometimes a good Idea.

veriterc profile image
veriterc

I write about skincare (some posts coming up on cancersurvivorship.com - when it gets going). Not surprised aqueous cream doesn't work - NHS Choices did have a criticism but they seem to have been made to take it down! If Flexitol works on your skin, their Skin Balm cream is available free on prescription, If not, try La Roche Posay; French company that specialises in skin care for cancer, proriasis and other skin conditions, Good but you have to pay - but Chemists who are chosen as outlets usually know their stuff when it comes to skin problems.

91049 profile image
91049 in reply toveriterc

Thanks for that

Catlady56 profile image
Catlady56

I use Balneum Plus cream which I get on prescription, but you can buy it without prescription. Have found it to be ideal for me. I also suffer from very dry itchy skin on my lyphmie legs and this cream has settled everything down nicely.

91049 profile image
91049 in reply toCatlady56

Thank you I will have a word with my doc

beechgirl profile image
beechgirl

Hello, I live in the United States, my mum was born in London. Have loads of family there. Thought it would be interesting to see if the problems with the treatment of lymphedema is similar. I use a product made in Greece It's a Korres product ...body butter. It's thicker than the creams the therapists tell you to use however,I usually apply once a day . If I'm having an "itchy day" I apply as needed. To buy from them or retail is expensive $29 . I purchase it from HSN a home shopping network similar to QVC. They have specials somI stock up.

91049 profile image
91049 in reply tobeechgirl

Treatment for primary lymphodeama is not good in my area I'm just left to sort myself. If it was cancer related treatment is available. Thanks for the cream name I will have a look .

beechgirl profile image
beechgirl in reply to91049

Kathy please contact me whenever you need assistance. I've fought the insurance companies and won. I now havevthe pump, Solaris compression garments instead of those awful stockings. A hospital bed to elevate my legs. Working in the hospital the insurance company couldn't intimidate me. I wouldn't take no for an answer Sometimes it took a year after fighting denials. Mote than happy to share info.

cathmc profile image
cathmc

hi kathy, like you i have primary lymphodema in both legs and feet, i have a spray which i get on prescription from my GP its called emollin its an emollient spray it smells like wd40 (but not for long) its not greasy you can turn the tin upside down and it still works, my legs dont feel sicky or cold (unlike when using aqueous cream) and i can get my stockings on no problem, they are class 3 flat knit made to measure, (a good work out is promised getting them on and off). it helps my skin stay soft and pliant, i was diagnosed when i was 23 and i,m now 57, still have struggles like us all but determination helps. good luck : )

91049 profile image
91049 in reply tocathmc

Hi I didn't know you could get made to measure on prescription ? or do you pay.that spray sounds great as creams make it a lot more difficult to get stockings on.

Thanks for your reply Kathy

cathmc profile image
cathmc

hi kathy, i get my stockings from my lymphodema clinic, which i attend for my lymphodema management, it at our local hospice in newcastle upon tyne, its called st oswalds, you should be getting your garments from your lymphodema clinic if not ask your gp to refer you to one, i get 4 pair a year measured at the clinic then they send them out to me they come from a company called Medi, or i can have them fitted at the clinic by my practitioner. hope this helps. no you don't pay for them, just for the prescription from gp for emollin spray. good luck hun . best wishes cathmc

91049 profile image
91049 in reply tocathmc

Hi I did have a nurse connected to my doctors surgery who done all the bandageing to reduce my leg and arm so she could fit the garments. Then she gave it up, so now I just get them from my GP same size twice a year not good as I know they are not fitting properly.

Dodidoos profile image
Dodidoos

Yes Kathy I do ever since I was diagnosed with LD, I now use Dermol shower ,and if the itch gets to much just a Sml ammount of Betnovate from my Doctor applied for a few days ,not to be used all the time as it can thin the skin causing it to worsen. So then I used E45 itchy cream and moisturiser lotion.

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