Dermatology conversation

[Montysmum1]

So.....had two different creams. Protopic and Elocon. I have Lupus Profundus . It badly scarred my arms to the extent I got plastic surgery to try and make them look better. It is now scarring my nose. Due to Covid my follow up appt is via telephone. The creams are not working and I dont know what to do? I read posts on here going on about seeing a rheumatologist but I have not been offered this ? Should I discuss what I have read on here with my dermatologist esp some of the medications ie plaquenil or methotrexate ? I am just worried watching the rash get bigger....😢

[svfarmer]

Hi am so sorry that your going through this with your skin - if I were you I would ask your GP to refer you to a rheumatologist as then they can at least get you on the correct medications only thing is it will probably take a while to get a referral it maybe quicker if you get your dermatologist to refer you - good luck xx

[Montysmum1 in reply to svfarmer]

Thank you svfarmer, I will bring it up in our conversation.

[weathervane in reply to Montysmum1]

Hi there , my son has lupus profundus as well . He is seen jointly by the rheumatologist and dermatologist on most occasions with some apps he is seen by a single disciple. He was started on plaquenil initially and then methotrexate was added fairly quickly, this combination seems to have halted the progress of his condition at the moment . He still has muscle pains and fatigue though which can be quite debilitating.

He has scarring on the tops of his arms an a bit on his chest , ithas not progressed any further.

I hope this will be of help to you , good luck , keep safe and well 🌸🌸

[Montysmum1 in reply to weathervane]

Thank you Weathervane. Can I ask if he gets bad side effects from the two medicines. I have been on google and it scared me a bit.....

[weathervane in reply to Montysmum1]

He had some side effects initially just from mtx , he had quite bad nausea and severe exhaustion, this settled after 4-6 weeks. He still has nausea and is tired the day after he takes it but he has found it has been ok. His bloods have all been fine , which is good as he may have to wait 3-6 months before they are checked again. I think he is like me as I tolerate meds quite well .

I think he would have been alot worse off without the mtx as it was progressing quite rapidly and had badly effected his shoulder tissue causing lot of pain .

[Montysmum1 in reply to weathervane]

Ahh ok. I will discuss it all when the dermatologist phones. Thanks again.

[weathervane in reply to Montysmum1]

Best wishes, love to hear how you get on x

[Montysmum1 in reply to weathervane]

Hi weathervane

I had my telephone consult. The dermatologist has asked for current photos of the rash and instructed my doctor to do full bloods again. I mentioned about swelling on my knees and one ankle from a fall 2 years ago that have never gone back to normal. I also asked about rheumatology.

She mentioned wanting to try me and hydroxy and was going to post out information on the drug and to speak to my doctor about it too. I really felt she was trying to start gathering everything together to get a better picture of what's being going on.

Came off the phone feeling quite optimistic.

Montysmum

[weathervane in reply to Montysmum1]

Hi there , glad you had a productive call , unfortunately it a slow process sometimes. It was 6 years before i was diagnosed with Sjögren’s, by the time i was i was feeling very ill . It was a couple of years before my son was diagnosed with profundus, he was told his shoulder pain was due to an injury, was only when they did bloods and he had a biopsy that they diagnosed him . Good luck hopefully you will get some relief , when the hydroxy kicks in.

Best wishes and stay safe xxx

[Montysmum1 in reply to weathervane]

Thanks, stay safe.

[Krazykat26]

Hi Montysmum 🤗

I have SCLE as my diagnosis n I'm managed by dermatologist..he prescribed hydroxy n methotrexate so it might be that your dermy can too..I have steroid ointment for rashes..protopic didn't work for me..if anything it felt like it was burning my skin. It's taken a long while to get the right combination of meds to manage my skin so I would suggest that u talk it through with your dermy first.

Take care 🌈😽😽xx

[Montysmum1 in reply to Krazykat26]

Thank you Krazycat26. Protopic did nothing for me. Elocon made it less red and fiery but it's still spreading...😒

[hopegalore20]

Hi Montysmum1, very sad to read the problems that you are enduring. It sounds like they are not yet under control. Needs further discussion with your Dermatologist and all going well, a little further down the line, the support of a Rheumatologist.

I suffer with Dermatomyositis. This Autoimmune Condition affects both Skin & Muscle. I have being seeing a Dermatologist, Rheumatologist and Neurologist fir 5 and Half years now.

I have been on various medications from Methotrexate, Mycophenolate Acid, Mycophenolate Mofetil. Presently on Prograf.

I use Dermovate Steroid/Elocon Steroid Creams on my body to help combat the severe itch. I also use Elocon Steroid Scalp Lotion to ease the heat and itch within the scalp region. In between, I use Cocois on my scalp to take down the heat and dry skin areas of my scalp.

I could not get through a day without these creams or lotion, as I would just be ripping my skin apart.

I also take Prednisolene, Atarax, Adcal-D3, Fexofenadine, Adizem, also using a very high suncream to protect my skin, when I eventually get the opportunity to go outdoors, Omprezole (to protect my stomach against these meds).

Please ask your Dermatologist to refer you to see a Rheumatologist if you are also suffering from muscle degeneration problems.

I wish you all the luck in the world in finding a medication that will stop the scarring spreading.

Keep Safe x

[Montysmum1 in reply to hopegalore20]

Thank you. Very helpful advice.

[heatherevans28]

So sorry you are going through this.

It is unclear whether your disease is limited to your skin or whether you have any systemic involvement. If it is the skin "only" (I use that word very reluctantly) then your dermatologist should be able to manage your condition. They can put you on hydroxychloroquine and / or immunosuppressants if they see fit. This might be something to discuss with them at your telephone consult.

I wouldn't quote health unlocked per say, but please do look up the official information on the lupus uk website. Most consultants work with them or will at least respect the literature they produce as it is checked to a high medical standard.

If it affects your joints or organs as well as your skin then a rheumatology referral would probably be best to make sure both aspects of your disease are managed long term. That being said, at the moment referrals aren't really being progressed, so it might still be best to discuss immediate options with your dermatologist.

All the best x

[Montysmum1 in reply to heatherevans28]

Hi Heather.

I was tested and it's not SLE. I feel badly about a year ago and my knees are still sore and swollen. I was discharged by physio as they said there was no more they could do. I also suffer from lower back pain.

I dont knows if it's all connected as I get no advice at all from my GP.

Thank you anyway. This website is a god send.

[heatherevans28 in reply to Montysmum1]

Ah okay, that's good to know then. Definitely follow it up with your dermatologist, as they should be able to manage your care. If they don't have much experience with lupus they can always talk it through with a specialist rheumatologist.

I'm glad you are finding it helpful. It can be very hit or miss in my experience x

[Montysmum1 in reply to heatherevans28]

Thanks again heather