Any recommendations?

[Amakura]

I've got Lupus and secondary Sjogrens. Both of them have decided to flare up at the same time but thankfully, kind of mild? thus far such as swollen knee, joint pain, fatigue but the sjogrens symptom is really uncomfortable: extremely sore and shedding lips with a tiny painful cut in the corner of my mouth, angular cheilitis. By the way, I've increased my water especially with food and I use Duraphat toothpaste and other prescribed mouth lubricants.

I've tried vaseline. It doesn't work. I'm currently trying Burts Bees with tumeric and its made no difference whatsoever. In the past, before being diagnosed, I used to try coconut oil and that just made it worse.

Does anyone have any remedy recommendations for extremely sore lips?

Thanking you kindly in advance.

[Spanielmadlady]

The only thing that works for mine when they are like that is blistex medicated cream and plenty of it.for the angular chilitis its daktarin cream x

[Amakura in reply to Spanielmadlady]

Thank you, I'll look into it as I tend to get angular cheilitis quite often despite increasing my vitamin increase.

Hope you're well x

[Spanielmadlady in reply to Amakura]

The daktarin cream was given to me by my gp but you can buy it over the counter.i use the blistex in the white tube which I buy in bulk from amazon. I could be better currently flaring so just had meds increased. chest xray in Nov on admission to hospital showed my heart is enlarged 🙄 but I'm still standing and still smiling . Hope your lips improve soon I know how painful and unsightly it all is xxx

[Tiggywoos in reply to Spanielmadlady]

Hi lovely hope you don’t mind me asking but it is the blistex with blue writing as I’m strugggled to find this lately in boots x

[Spanielmadlady in reply to Tiggywoos]

Hi hun... Amazon x

Blistex

[Tiggywoos in reply to Spanielmadlady]

Ah fab thank you 😊 x

[Spanielmadlady in reply to Tiggywoos]

👍 I buy about 6 at a time ....roughly 1 for every pocket lol 😆 x

[Tiggywoos in reply to Spanielmadlady]

🤭🤭

[Spanielmadlady in reply to Tiggywoos]

Mind you that doesn't inc 1 for upstairs 1 for 1 downstairs and 1 for the car 🤦‍♀️ x

The things we do to relieve ourselves of discomfort x

[Amakura in reply to Spanielmadlady]

Thank you, I was overwhelmed with the Blistex variations especially as some are the same colour as well (I was looking for the blue one, in particular today) x

[Amakura in reply to Spanielmadlady]

Ahhh get better asap but most of all, take care of YOU! Be kind to yourself. Thanks for the further info xx

[Spanielmadlady in reply to Amakura]

Thanks I try too but with 1 teenager at home 2 dogs and 1 90 year old mum it's not always easy .Get those lips sorted so you can put on some lovely lippy xx

[Amakura in reply to Spanielmadlady]

Haha lol oh my gosh, just the mention of lippy makes my lips even more sore. They're actually numb today. Strange.

Nevertheless, I care for a disabled sibling and at the same time, sorting out and battling with her community care including going up against the vast majority of my hospital consultants and my elusive GP. Sometimes it feels as though I'm an FBI agent, trying to get to speak to my GP. So, I'm starting and trying to learn to create some sort of balance because the least interaction I have with the hospital (I'm literally there every month or two weeks), it lessens (a tiny bit) my stress levels because I also have to advocate for myself and be a patient at the same time. I've given up on my GP now and only use them as a pharmaceutical dispensing outlet. As for my caring duties, it's an ongoing science project: testing out different methods to see which ones work best for me and also my sibling but incorporating more self care for myself. Has it improved my autoimmune conditions? Ask me in a few months 😅

I hope the flare is short in its duration and keep on smiling xx

[Spanielmadlady in reply to Amakura]

It never fails to amaze me how I can go to bed fine and get up next day with bad lips.i get deep splits in my lips which are really painful and take some healing .I also get lumps like coldsores that don't break out .I'm lucky with my gp as I have open access consultantwise I have 4 maybe 5 if I need cardio and sometime i feel I should set up camp in the carpark.ive learnt not to stress about things i cant change what will be will be but dealing with it all is still draining.we all have so many other challenges besides are own.my mum is losing her sight to Charles bonnet syndrome so there are eye clinic appointments for her which arnt at our local hospital. After 3 days of cleaning up after a sick dog today is a feet up day...I've got a baby blanket to finish 🙃 xxxx

[FlowerdownAnnC]

Blistex all the way - it works brilliantly for me too. Hope you feel better soon.

[Amakura in reply to FlowerdownAnnC]

Oddly enough, I totally forgot about blistex which has been around for donkeys years. Burts Bees lipbalm has been torture!

Thank you

[BeeHoneyB]

Blistex or Bodyshop Vitamin E lip balm with spf also helps me ordered online. As they don’t sell it In shops. I have Lupus and Sjogrens.

Coconut oil on its own can have drying effects either on skin or if used in the hair.

Hope you feel better soon

[Amakura in reply to BeeHoneyB]

Ahhh interesting and I'm glad I'm not the only one about coconut oil.

Out of the two, which one is your go to or do you alternate between the two?

[BeeHoneyB in reply to Amakura]

I would say Blistex it’s easier to get hold of in shops. Bodyshop one is good but pricey online! I was steered towards it due to the Vitamin E and benefits for dry skin and helping skin renew itself. I might try the new version they have in Bodyshop as I had vouchers for Christmas!

I have two lip balms on the go as sometimes one just doesn’t work for a while so I switch them. I never like being totally dependent on one thing as over the years I found some things just stop being manufactured . So you have to start trial and error again!

It’s surprising how many people don’t realise coconut oil can be drying.

[Amakura in reply to BeeHoneyB]

Good point, as manufacturers for some strange reason, always seem to come up with a 'brilliant idea' to change the formula. I'll take heed of your tip and thanks for sharing your opinion on the both of them xx

[milkwoman]

I agree with others here - Blistex Lip Medex (little blue tub container) is wonderfully soothing and healing.

[Amakura in reply to milkwoman]

Thank you, I was becoming so desperate that I was going to go for the Elizabeth Arden lip treatments. However, I'm going to keep it old school because these fancy brands don't always live up to their reputation when an autoimmune condition is in the mix! Also, the responses have confirmed my thoughts.

Really appreciate xx

[Tiggywoos in reply to Amakura]

I think the more you spend sometimes the less effective it it … x

[Amakura in reply to Tiggywoos]

Good point, indeed!! Xx

[Tiggywoos]

Ooh I got a perscription for Chelitis last week …Mupirocin ointment 2%

Haven’t picked it up yet 🙈.

Not sure if it’s the same as what spanielmadlady has suggested

Take care x

[Spanielmadlady in reply to Tiggywoos]

Mupirocin is anti bacterial Daktarin is anti fungal both used to treat skin infections 🤷‍♀️ xx

[Amakura in reply to Tiggywoos]

Thank you, I was going to ask my Dermatologist next week to prescribe me something as - like the majority of the UK - my GP is scarce like good gold but unfortunately, my hospital has been changed to July!!!!

Just noted Spanielmadlady response, so I'll purchase that in the meantime. X

[pancake-5]

I use Blistex, it’s the only thing that works for me

[Amakura in reply to pancake-5]

Thank you, I'm en route to make a purchase x

[Flueby]

I was prescribed a steroid cream for the angular chellitus and also found the miconazole nitrate and hydrocortisone cream I had for lichen planus helped. Hope it clears up soon