Lymphedema & Knee bursitis

[Bailybiscuit]

I have Inflammatory arthritis, Sjogren's and OA. I have been on Methotrexate and Imraldi since 2017, before that I was on Benepali. I have had a new hip in 2017 and I also suffered with my knees which despite many steroid injections they are no longer having any effect. I saw my rheumatologist in November last year after 18 months from the last appointment. I was last patient of the morning so was not able to show all of my legs as there wasn't time, in any event he doesn't examine me regularly. I wondered if anyone has developed swollen legs and swellings below the knees? I have started having acupuncture to help the pain and the acupuncturist thinks I have Lymphedema and has started lymph drainage on my legs. At first they felt wonderful. now they seem to be just as large as ever. My GP said there is no treatment on the NHS for this, if this is what it is. Has anyone any ideas what might help?

[Madmusiclover]

You might find this useful. nhs.uk/conditions/lymphoede....

[Bailybiscuit in reply to Madmusiclover]

Thank you. It say's daily but no way can I afford to have it done daily if it isn't available on the NHS. I know in a nearby town it is available but only for people who live there

[AgedCrone]

You could try asking your rheumy nurse to put you in touch with a Lymphodaema nurse….I had it in my arm after breast cancer & ended up seeing one of these nurses a couple of times She gave me a couple of massage treatments & showed me how to perform the massage myself…but being my arm it wasn’t too hard to manage …I would think the lower leg might be a bit difficult.But do pursue trying to get some treatment in your area…you may have to get your rheumy to refer you privately…..if as your very unhelpful GP said it really isn,t available on the NHS.

[Bailybiscuit in reply to AgedCrone]

I'm not sure what I put but meant upper leg . My acupunturist has shown me how to do the massage and I don't seem to make any difference. Even when she does it now the fluid comes back even more. I read yesterday that Imraldi can cause this so am trying to get in touch with my rheumatologist and GP about this. Did yours go away in the end?

[AgedCrone in reply to Bailybiscuit]

After about a year the main swelling did fade…but one arm is still fatter than the other . But I know the reason & have annual check ups.I agree you should definitely keep pushing to get some helpl

[Bailybiscuit in reply to AgedCrone]

I intend to. I think if it is Imraldi then my rheumatologist should take me off it. Both he and the nurses have been so different since COVID, not at all helpful, like everything is too much trouble. The nurses helpline now say if they don't get back within 5 days where as it used to be the same day mostly. There seems to be so many things you can't phone them about now .

[janmary]

Perhaps the GP meant that he/she couldn’t treat lymphodema - - in our area there is a community nurse specialist led service.

[Bailybiscuit in reply to janmary]

No she meant no where at the hospital. There is a department that deals with it if it is caused by cancer but mine I think is caused by Imraldi. I am trying to contact my GP and. rheumatologist.

[welsh12 in reply to Bailybiscuit]

But surely whatever the cause they should look for some advice and treatment for you nest of luck

[Bailybiscuit in reply to welsh12]

Thank you. I have got a GP appointment Thursday and actually had a reply to an email from the hospital. Whoever sent it has passed my email to the nurses and suggests my Dr writes to the rheumatologist. I hope something might come of it. I think suffering all those years was bad enough but having got worse it is unbearable. My husband wanted me to contact PALS but I would rather see if I get any help this way first.