I have just recently been diagnosed with Primary Lymphoedema of the legs and awaiting my first appointment for Compression treatment. I am being put on antibiotics twice a day for a year and will need to wear compression socks as and when my treatment is finished, will I be entitled to free scripts. I have also been told this is manageable but not curable.

12 Replies

  • If you have been put on long term antibiotics I assume you have had repeated episodes of cellulitis. Every episode of cellulitis further damages the delicate lymphatics and lymphoedema can become worse. You can download the recommendations for the use of antibiotics in lymphoedema from both the LSN and BLS websites and this may be what your doctor is using. It is called the 'Consensus Document for the Management of Cellulitis in Lymphoedema'. Regarding prescription charges, unfortunately lymphoedema is not recognised as a long term condition so unless you have one of the conditions that is, you have to pay. Some hospitals and clinics will provide hosiery, but as we move towards more lymphoedema services being commissioned to be run in the community, GPs will have to pick up the tab for compression. That means the patient pays the prescription charge. Lymphoedema garments off the shelf attract one charge per PAIR. Never let a pharmacist try to charge you per garment unless it is a specialised garment. The best way to save on prescription charges is to buy a pre-payment certificate. If it takes several attempts to find the best fitting stockings you will soon have saved money. You can buy a 3 or 12 month card.

  • I suggest you look at the website of the Lymphoedema Support Network Also you can phone them and they have lots of information, leaflets. If you use Facebook join Lymphoedema Fashion. Also look at Lymphoedema on the NHS Choices website - there is a video clip there of someone talking of living with primary lymphoedema (it is me actually). I have had it since childhood. My brother and sister have it (but another brother does not). We are all affected differently and have had different requirements from antibiotics.

  • Hi,I don't want to hijack this post but with regard to AnneBury's reply regarding 'Lymphoedema Fashion' on FB, is this group still active? I tried to join this group ages ago and nobody ever got back to me. Any info appreciated,thanks.

  • Yes, it is still active. I will put post on it to say there may be at least one request coming through, so suggest you try again.

  • i also tried to join the ld fashion group no reply

  • Thanks Anne,I checked earlier and I still have a request showing and my name is Linda not Julia,damn my cover is blown. Lol.

  • I have passed your info on.

  • Thanks Anne,in between times I have managed to find the admin on a different group(Lymph-what-oedema) and messaged her direct. Many thanks though.

  • Yes, you will have free antibiotics, except for prescription charges. I am having the same treatment . Not sure about the compression stockings, but I believe they are part of the on going management of the lymphoedema. I will be discussing it with my GP soon. I have had my first set free on the NHS.

  • I would agree about where to get information, I have found the Lymphoedema Support Network helpful, also the British Lymphatics Society, especially the info about treatment for cellulitis. It is really important to prevent cellulitis recurring as it causes so much damage. I wish you all the best - I have really found that the advice and treatment works!

  • It is my understanding that primary lymphoedema patients do not usually get free prescriptions for anything to do with their lymphoedema. Patients who have lymphoedema as a result of cancer treatment do. Obviously if you get free prescriptions for other reasons like being over the age of 60, then, of course you do. Until I reached that age I paid prescription charges for antibiotics and my compression garments (although my clinic does seem to have started giving compression garments without the prescription charge more recently).

  • The lymphoedema clinic I attend is at a hospice which was set up and still relies on donations. I have primary lymphoedema and receive free compression garments but had to pay for Diprobase and antibiotics. I sometimes get the impression that the clinic is assessing my ability to pay for the hosiery.

    A family member, also with primary lymphoedema, but attending a different clinic, receives free garments but has been on antibiotics for several years, and buys a pre-payment certificate depending on employment status.

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