Lymphedema and fairly new diagnosis of Psoriasis !

Posted Tue 31 Oct 2023 15.14 by BB

I am really struggling here folks. I feel depressed and fed up with it all. This is the very first time I have reached out for help or just a listening ear. Its such a stupid vicious circle. I have to wear Comfisoft tubular bandage on both legs at the very least plus dressings for the lymph drainage. I am meant to wear wraps but as I now have Psoriasis its impossible, the wraps make the skin worse, tried so many things including silver threaded stockings that you wear under the wraps that are very expensive but every single thing irritates my skin these days. Then a few months ago my local Lymphedema clinic discharged me for none compliance ! even though my GP thinks that was unbelievable. I cant keep my legs dry enough to apply and let the creams do their work, my plaques on my legs and feet both on top and whatever type it is on the soles are constantly wet with lymph fluid, this means my plaques are always soggy even with special dressings, they don't give me enough anyway to cover all areas I need to cover. I am so over changing dressings every few hours then trying to decide what treatment to use. I am just unloading now so going to stop lol my head is about to explode. I guess I just needed to write this instead of it keep whirling round in my head. Thanks for listening folk, sorry its a rambling mess haha, its one of those days we must all have.

Posted Thu 2 Nov 2023 17.12 by kiloran
From Lichen Planus to Plaque Psoriasis to Palmoplantar and Nail psoriasis - newly diagnosed 2023

I see and hear you - what a difficult situation to be in. I've found that bandages aggravate my psoriasis - I started using comfisoft bandages over Xupad dressings and bandages for the psoriasis in my feet and by covering my ankles all day they just scaled over. This seems to be the case for anywhere on my legs where there's abrasion or pressure - e.g. top of knees when sitting with legs crossed. Where are you at with managing your psoriasis? It sounds like if you could get the right treatment for that you'd then be able to tolerate the requirements for treating the lymphodema? Rather than topicals it sounds like you need to get on to a systemic - but I have no idea if they're not contraindicated for lymphodema.

Posted Fri 3 Nov 2023 11.00 by BB

Hi Kiloran Thank you so much for the reply, it helped a lot to know another person is having similar issues. My journey with psoriasis only started roughly around Feb this year. I had cellulitis early December then got shingles badly just before Xmas then as the shingles subsided (leaving me with horrible nerve pain ) I started developing a new rash all over my body. My legs and feet are the worst effected areas along with my blooming ears and butt cheeks lol 😂 At the moment I am at the initial treatment phase which is as you will know potent steroid Enstilar foam plus Adex gel plus Fusibet and antibiotics for repeated infections with the skin on my lower legs. I have Keramex dressings as they absorb the lymph fluid then use the comfisoft tubular bandage to keep the dressings in place. Half the battle is the surgery and the amount of items they give ! I have repeatedly told them I am currently using 5 dressings a day on one leg over plaques that I am trying to keep as dry as possible between foam/cream applications but they insist on prescribing 30 a month ! I need to also bathe my legs twice a day to help with infection but will the docs prescribe cetaphil gentle skin cleaner ? Will they …… nope can’t have that on prescription. I purchase a litre of it a month myself, I have sent in the Psoriasis Association GP letter re emollients etc and bathing and I have spoken to the doctor with no luck at all, they simply will not prescribe any soap substitutes or bath additives at all. I agree I think treatment other than creams etc would be a better alternative but from all I have read we have to go through a set pathway of treatment so biologics etc are probably a long way off for me plus my first Dermatology apt is not until next April which you can bet your life will end up being next June/July lol 😂 Until then I will just have to plod on and just do what I can. Thank you again for understanding, I’m here to listen to you too if you need to off load. Take good care 😀

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