Lip & mouth issues

[Smithy26]

Awaiting consultants appointment in Covid 19.

Tumidus Lupus?

After many years of ongoing facial rashes, started 12 year ago approx. But last year & early part of this year at its worst. My Gp referred me to see a dermatologist regarding this, on December 30th 2019, appointment was due just after we went into Lockdown. Can't be helped, & totally understand why. I'm patient.

It gave me time to do some research myself. I was 59 at referral date, turned 60 in April. Symptoms go back as I said over 12 years.

I have been prescribed Mometasone Furoate 1mg cream that has finally helped, after trying numerous alternatives.

My main ongoing problem.,, when not having a flare up is my lips and just around my mouth, peeling, dry, cracked almost permanently. The cream stings on applying to my lips too. I use daily vaseline or lip salves, but really makes no impact.

Anyone else suffer with this with Lupus of any form?

My sister had Lupus SLE, but sadly passed away 13 years ago, aged 51 with a heart attack. I'm not anxious about any diagnosis, but like most I'm sure who await a diagnosis, really want to know what it is.

My face around eyes are usually worst hit in a flare up too. Any thoughts welcome.

[Bronagh2015]

Sorry to hear you're suffering with all this at this weird time Smithy26. I'm afraid I can't offer much help, I've had systemic lupus for 25 years now. But for the last 8 weeks mouth ulcers and lips exactly like you describe have been driving me crazy! As you say even putting on the lip balm is painful so I'll be interested in any replies you get.

[Smithy26 in reply to Bronagh2015]

Thankyou. I avoid the sun as best I can too. Don't even put lipstick on now either, pointless it looks awful. 😂

Gosh, you've had it a long while.

I now think I've had whatever it is for over 12 years. Started with underactive thyroid, and developed Raynauds in 2008, just after losing my sister, who also had Raynauds with her Lupus. I've had osteoarthritis since late teenage years. On the whole I'm a very positive person, and don't grumble., just battle through life., but hide much of my joint pains etc. Ajways, say, others far worse than me. It was my dear mum who gave me the push to get seen by a dermatologist /& rheumatologist... My gp thought Dermatologist first., as he knows I already have arthritis. I've declined many painkillers so far.

Lets hope others suggest something that works on our lips. Thankyou for replying, much appreciated. Stay safe. xx

[DJK99]

Hey Smith26 - that sounds very painful, so sorry. I only have sores inside my mouth and nose (and the latter which crack on the outside) - plus on my fingers and arms. Have you had a google and looked on images to see if you can find a match? Or post a photo on here and it might really resonate with some who can help? I'm sure you are, but are you drinking a lot of water every day? I used to have cracked lips a lot when younger but this really improved when I started to drink 2litres of water a day..it's a commitment! I also noticed it improved when I started to eat oily fish such as mackerel or salmon a couple of times a week, along with a ton of green and orange veg. Do you take any high quality vit/mineral combo's? I know a lack of B2 can lead to real problems - just copied this "Being low in B2 can result in swollen and cracked lips, so you should eat vitamin B2-rich foods such as almonds, eggs and mushrooms, to increase your levels. Cracked lip corners can also mean a vitamin B6 deficiency.". I recommend a Solgar multi Vit/mineral tab a day , (or Holland & Barret etc) - made a huge difference to my energy levels and skin quite a few years back... Skin struggles more these days as I'm much older (57 now) so it might not help - but, as expensive as they are, it might do something for you? Hope it's OK to mention, as you might be very up on all this anyway. Hope that helped a little. Take care,D

[Smithy26 in reply to DJK99]

Hi, thankyou for your reply. I do drink 2 litres of water daily, have done for many years, & recently started taking vitamin b12. As I'm awaiting my consultant appointment I'm ructant to take anything else incase it interferes with any tests they may do.

I have kept a photo diary of flare ups & possible links to my ongoing issues. My gp has seen these too. As you can guarantee by time I see my gp or consultant my face will look OK. Typical. But pleased I have some very clear photos of my worst days. Not sure how to upload them on here though. Technology is not my forte.

Thankyou for your reply though & any advice is welcome

[DJK99 in reply to Smithy26]

Hey Smithy -great you have pics to show your doc. To post any pics on here you have to do a new post and below the area you write, it says Add Photo and you can do this from your phone or your computer. Good luck Smithy! x

[Crazy_Cat_Woman]

Hello Smithy26,

I’m sorry that you are going through such a hard time. Facial sores are horrid aren’t they? I get mouth ulcers and sores in my nose as well as the butterfly rash. I often feel quite self conscious about my facial rashes and sores because they are so visible to everyone. I can easily hide the sores that appear on my legs and other areas but I can’t hide them on my face as easily.

My dermatologist has prescribed me Clobetasol proportionate 0.05% and Synalar C for my sores. The second one is for use on open wounds. I use a medicated shampoo for the sores on my scalp. For mouth ulcers I prefer to use Igloo gel which you can buy at the chemist.

My brother has a different range of creams prescribed to treat psoriasis.

You really need to speak to a dermatologist about the best treatment for you because we are all different. What works for me may not be effective for you because the underlying cause of the rash/sores is different. Are you able to speak to your GP or the hospital and ask for your appointment to be brought forward? They may be able to do a telephone consultation and prescribe something in the interim - with a view to having an examination or skin tests later on.

I do hope you find some respite from your pain and discomfort. If you find something that really works, please let us know xx

[Smithy26 in reply to Crazy_Cat_Woman]

Hi, thankyou for your reply. I have rung the hospital, & get told I'm in the Q to be seen, but they had 2 dermatogists leave prior to lockdown, and they can't give me any idea how long my wait will be. No telephone appointments are being offered yet. Ironicly my hubby has a telephone consultation from ENT clinic next week though & his referral was 2 months after mine. I don't like to keep chasing under the present circumstances. I may mention the clobetadol to my gp next time over phone. No routine appointments there either during covid, just emergencies. They've introduced e appointments though. On line video technology which I'm not great at. Could be fun.

I'm taking naoroxen & lansoprazole for pain, but try avoid most of the time. This is for my osteoarthritis.

I'm going to try Okeefes lip salve as had that recommended to use daily too. My prescription cream says not for long term use on the face so I use sparingly and only if real bad.

I will just have to wait & hope my appointment is this year. Thanks again.