Chilblain Lupus and UVA sensitivity

[pattypatchwork]

I have finally received an official diagnosis, I have chilblain lupus with uva sensitivity. Has anyone else got this?

[BonnyB]

Hi, I've not heard of it. I'm pleased you have been diagnosed, hopefully now you're on the right path re treatment x

[Mooncat111]

I’m glad you have a diagnosis now and hopefully are able to access appropriate treatment now. I have been diagnosed with SLE and believe I have chilblain lupus too as my fingers are constantly covered in itchy stinging sores. Nothing seems to hell heal them, even though I’m now in bellimumab (a biologic). How does your chilblain lupus manifest itself and what treatment have you been offered?

[pattypatchwork in reply to Mooncat111]

Hi I too get nasty painful blisters on my fingers which seem to always be in the same place and leave scars. I am on 400mg hydroxychloroquine daily and will have steroid injection when the blisters are bad.

Blisters

[Mooncat111 in reply to pattypatchwork]

My consultants only suggest Betnovate on them but it’s difficult putting steroid cream on your fingers unless you don’t intend touching anything for several hours!

[pattypatchwork in reply to Mooncat111]

I have found e45 cream helps

[Djlr in reply to pattypatchwork]

That is a high DOSE of Hydroxychloroquine - hopefully you are over 170 lbs -

135 - 170 pounds = 300 mg of Hydroxychloroquine

170 + lbs = 400 mg

135 or less lbs = 200 mg

lupusencyclopedia.com/top-t...

And - Yearly schedule the OPHTHALMOLOGISTS for your “eye” peripheral VISION TESTING. So important, to check for eye toxicity.

You have definitely given us a NEW VERSION of Lupus - hope all goes well for you. I would ASSUME the SUN & STRESS ARE TRIGGERS for your FLARE UPS too.

Take care & keep us posted. 💜

[pattypatchwork in reply to Djlr]

Hi, yes, I have yearly eye checks and so far so good.I had been reduced to 200mg but my last attack of blisters was that bad that my consultant put me back on 400mg and I had a steroid injection. I don't weigh 170lbs but its either this or a drug which could make my hair fall out.

Flourscent lights are bad for me. All our household bulbs are now led ones and I have uva film on the window of the room where I wfh and I only go into the office one day a fortnight.

[Barnclown in reply to pattypatchwork]

yes, me too,,,my full reply is below

[lupime]

I have chilblains today, which seems absolutely bonkers in this heat.

[pattypatchwork in reply to lupime]

I get them in the summer as well

[Barnclown in reply to pattypatchwork]

me too…my full reply is below…

[Hamptons]

I have chilblains and photosensitivity as symptoms but not in my diagnosis title

[pattypatchwork in reply to Hamptons]

What have they said you have?

[Hamptons in reply to pattypatchwork]

just SLE.

[Djlr in reply to Hamptons]

We have to REMEMBER all our Triggers, symptoms which can be overwhelming to keep track of to SHARE at our 3-4 month dr visits.

Journaling / or keeping a notebook of various possible LUPUS SYMPTOMS & What might have Triggered them is helpful for YOU & your Dr.

thelupusinitiative.org/pdf/...

lupusontario.org/wp-content...

[Barnclown]

hello pattypatchwork

First just need to check: are you saying the nhs has officially diagnosed you with the rare version of lupus named CLE aka ‘chilblain lupus erythematosus?

Because if your answer is yes, am especially glad to meet you, because I’m one only 2 people here (as far as we know) diagnosed with CLE!

& mine is simultaneous with SLE aka systemic lupus erythematosus. And I also have UV sensitivity. CLE patients do tend to have SLE too, if not at first, it can develop later.

There is also the genetic form of CLE named Familial Chilblain Lupus, but genetic testing is required to officially diagnose FCL, and so far the nhs has not genetically tested me for FCL

As far as meds for CLE goes: there are no official guidelines, but the science says that the systemic meds I take for SLE (hydrocychloroquine, prednisolone, mycophenolate) are good for CLE, + the usual prescription topicals (betnovate, dermovate etc) & most important is systemic meds for your ray suds, eg I’m on long term daily high dose sildenafil + low dose losartan because I cannot tolerate nifedipine & iloprost.

This link gives probably the best up to date, thorough info I’ve found on CLE, including specifics on systemic meds:

dermatologyadvisor.com/home...

Hope something in there helps

💞💞💞💞 Coco

[pattypatchwork in reply to Barnclown]

Hi, yes, my NHS consultant has officially diagnosed chilblain lupus. It's taken 4 years to come to a conclusion as my autoimmune disorder was stumbled across in 2019 when I was having various tests to see what a lump on my finger was ( turned out to be a cyst) I had one of the blisters biopsed in 2020 and the result was lupus but my rheumatologist refused to accept it at the time as my blood results were not pointing at any specific connective tissue disorder.

After a really bad flare up at the start of this year, more bloods were taken which finally said lupus and specifically chilblain lupus. I was told it was rare but I didn't realise how rare!

I think we should stay in touch to support each other x

[Barnclown in reply to pattypatchwork]

gosh! Am relieved you’re finally getting diagnosis that makes sense of your manifestations! I feel so lucky my Dermatologist finally figured out that my CLE is as severe as my SLE…& that my rheumatologist agrees re CLE.

Have only met 1 other official case of CLE here on forum & hers is familial. I haven’t noticed her here for months. There was a woman in the USA who’d been diagnosed, but then her consultant changed her mind. I’m still in touch with her via private messaging. Her consultant is trying her on the meds discussed in the paper my link gives you, but none are helping much & all gave her bad side effects. Am planning to check in again with her soon. And by another route I met a woman in Germany with familial CLE recently

Is your consultant who diagnosed the CLE a rheumatologist? Has your consultant explained about familial CLE & offered you genetic testing…maybe your blood tests confirmed you have the gene? Do you know if members of your family have or have had similar manifestations?

Now I’ve had several years to study the official literature & latest science on CLE & familial CLE, i have a feeling there is probably more CLE out there undiagnosed than the health establishment suspects

I’m 70 this year & all my rare primaries were infant onset (SLE, hEDS, CLE, PID, DES Syndrome). I’ve always been big on self help/lifestyle management, but my combined therapy meds do help a lot. Am in tertiary care with immunology for the PID (Antibody Deficiency Disease) & gastroenterology (for so-called rare GI tract organ failure) & attend a bunch of other NHS clinics regularly.

I’ve been here quite active on forum for approx 12 years, but the continuing multisystem immune dysfunction & connective tissue debilitation + aging + all the DIY home specialist nursing my consultants are delegating my way are so time & energy consuming that I just can’t manage to contribute here much at all now. But OMG has your post got me going! I agree: let’s try to stay in touch & support one another. Many thanks for posting 💞💞💞💞