eyelid rash update and photo

[Stills]

here’s a close up of the itchy eyelid and you may see the discolouring almost like an old bruise but it’s light purple or dark lilac in colour. It’s on both lids and my under eye skin looks darker than usual for but does not itch. Any ideas….. age, menopause, hysteria? No discharge or flakes visible and the eye itself is ok just dry and dull from poor sleep and health.

[OldTed60]

I replied suggesting this as a possibility on your previous post but no reply so here’s a link just in case - it seems to match your description and photo

“Cutaneous features of dermatomyositis

Characteristic skin changes of dermatomyositis include: Heliotrope rash — bilateral lilac discolouration of the eyelids (particularly the upper eyelids) with swelling of the eyelids and skin around the eyes.

dermnetnz.org › topics › adu...

Adult-onset dermatomyositis - DermNet”

dermnetnz.org/topics/adult-...

[Stills in reply to OldTed60]

Thank you OldTed, sorry if I missed your previous response. I’ve been on overnight ‘duty’ at Mums and the internet is dreadful there. This is interesting as these last two year of symptoms I thought were aggravated Stills or possibly thyroid related but tests negative (such as they are). New inner thigh muscle to groin pain I thought might be hip related could be attributable to this as could the new and different wrist and palm pain. Anyway thank you; I see there is no cure for this so no point bothering the quack unless it gets worse but hopefully the pharmacist will have some cream to help stop the eyelid itching.

Is it too soon to wish you a merry Christmas 🎄

[OldTed60 in reply to Stills]

You’re welcome. Ugh I just replied but didn’t post in time before phone call from hospital about my infusion day this week - now lost longer reply. DM is similarly incurable to all the others. But can be modified/ controlled well same as the others too. Indeed friends recently diagnosed get mycophenolate and Rituximab or IVIG for it if the others don’t work - just same as lupus, RA etc. So it’s absolutely important to “bother” your doctors about it and get it excluded or diagnosed - although can take longer with DM because it’s rare and really you need a specialist Rheumy and dermatologist who know about myositis to treat. It’s well worth asking same post on the Myositis UK group here. X

[Stills in reply to OldTed60]

Thank you, I noted it was rare, as is Stills, but AI conditions attract others so shouldn’t be surprised really . I have Depyutrens Contracture, dry eyes and fingers that go white and cold, all similar mechanisms I think. It’s interesting that there are so many similarities with Lupus for example. I’ve learnt so much from HU posts. Thanks OldTed

[OldTed60 in reply to Stills]

I think you need to follow and post on this group about heliotrope eyelids. Reading your reply to Misty14 below I don’t understand why you’re not under a rheumatologist for your Stills? If you can afford to see one of the few Uk Myositis experts you might at last get some answers. I think the top two are called Professor Michael Hanna (Neurologist) and Dr Patrick Gordon (rheumatologist - Kings) : healthunlocked.com/myositisuk

[Stills in reply to OldTed60]

I was diagnosed with Stills aged 17 in 1979 after three month of agonising joint pain left me bed ridden in the middle of my A levels. I was unable to even lift a glass of water. Steroids etc ended as the illness declined by my mid 20s but joint damage was done and remains. It’s autoimmune and auto inflammatory, in my case the classic symptoms of sore throat, afternoon fever, rash and crash have been fairly constant , worse days and ok days. I have lived my life within the confines of this and managed. Although I now know otc codeine meds for pain may have caused the diverticulitis found during cancer scare checks last year.

Things started to worsen with the menopause (perhaps) and 12 years ago. Then November 22 I had my third Covid vaccination combined with my first flu jab. I became very unwell ( not saying it was the jab) and by Feb 23 was having cancer tests. I remained unwell, several scopes etc and lots of meds dominated that year with no cancer found. I remained unwell and all doctors have ignored looking into Stills as the cause. I’m still not well but better than I was, thyroid has been tested and ruled poor but ok.

I’m certain it’s all Stills related. I’ve gathered other AI conditions over the years although non serious, lichen sclerosus and deputryens contracture for example (spelling sorry).

I could just see a rheumy privately and see what new drugs are available f or Stills and more importantly if they would make a difference but it’s taken this long to get other things ruled out.

I guess I have reached the end of self managing it and was hoping for an easy route to better health. Other things they did find muddied the waters a bit but they have just not really looked into Stills given it was such a long time ago and they don’t even have any records of it apparently. Addenbrookes 1979 was very different to the electronic world drs inhabit today.

During this time my Dad, Step Dad and ex husband died all within two months and I have two aged widows to deal with, one with advancing dementia the other with mobility issues so the stress must have contributed. Plus I had a severe leg muscle rupture that went untreated during the pandemic leaving me with a limp and now my squint eye (repaired aged 3) is turning inwards and affecting my vision.

I feel better now than I have done since late 22 and am thinking of the private option.

Hope this explains in more detail all that’s been going on. Thank you for your kind advice support and reply’s.

[OldTed60 in reply to Stills]

I feel for you so much with the two elderly relatives to care for. I’m fortunate to have avoided this because all are now long passed away.

The rest rings chords although I know systemic sclerosis is considered by rheumatologists the most serious (mortality risk 50%) rheumatic autoimmune disease so I’m on Mycophenolate and Rituximab in hope these work preventively for lung and heart involvement.

When young I had similarly awful time as you describe but always undiagnosed or shrugged off by family so never even got as far as specialists. Now, age 61, I feel a bit bionic with a stoma, a central venous portacth and monthly iloprost. The practice nurse just checked my lungs to make sure that cracking in base of lung has cleared up prior to restarting mycophenolate and I got the all clear plus a diagnosis of PMA from her. I raised eyebrows so she laughed and said “PMA = positive mental attitude - as well as bionic!”. So I explained that actually, barring my severe GI dysmotility, I’ve got off relatively unscathed for a scleroderma patient - probably thanks to treatments I’m on. Researching hard and landing a brilliant rheumatologist has made a huge difference. I was almost discharged in 2019 so sought second opinions privately further afield and then referred by my dermatologist locally on NHS.

I think if I were in your shoes and had leg muscle pain and weakness with heliotrope eyelids - I’d focus on looking into Myositis rather than Stills. It’s just as serious and, if there’s no record of your Stills and it was that long ago - it would seem more sensible to go with where your existing symptoms point. My early autoimmune diseases were severe Eczema, hidradenitis suppurativa and Alopecia Areate. But once I hit early menopause and was treated for my borderline hypothyroidism, these less serious autoimmune diseases cleared up.

Sadly I then had sudden onset seronegative inflammatory arthritis, mostly affecting my tendons and muscles, much as you describe when you were 17. Since then, 13 years ago, I’ve been rediagnosed several times and have kept a very open mind on which conditions might be causing what. But the hallmark signs and symptoms of Scleroderma ie Raynauds, gut dysmotility and red telengecstasia spots with pitted fingertips started showing around the same time as I was diagnosed with Sjogren’s (also seronegative) and piled on fast until a specific antibody was found and an expert professor at Royal Free confirmed my systemic sclerosis (likely diffuse) “unequivocally” last year. He explained that my remembered childhood illnesses ie whooping cough, impacted bowels as well as the recorded ones like measles, chicken pox etc - had almost certainly been the precursors to my Scleroderma - which presents quite a-typically on the outside, meaning I actually look rather well!

[Stills in reply to OldTed60]

There must be a record at the hospital and with my previous GP and even of my steroid card. I moved around a lot in the 90s but have been settled here since 2002, the locum at my surgery said my records start then so they haven’t bothered to get them from my last surgery. However I’ve not sought meds or help for Stills since my mid 20s so there won’t be much record since I discontinued steroids I presume.

I agree with your summation and suggestion, thank you.

I just feel a bit of a fraud after all the tests I’ve had recently revealed nothing. A bit of dry eye, the odd numb finger, a rash that doesn’t hurt are not life threatening and the joint issue is longstanding. If it wasn’t for visible signs of these things I’d mark myself down as hysterical, menopausal, depressed women of a certain age which is how the GP makes me feel .

I’m researching and reading up on DM at the moment , thanks again for all your support.

[OldTed60 in reply to Stills]

You’re very welcome. I too have moved around and used to feel the way you’re feeling with my useless former GP practice. I’ve thought a lot about this recently with the assisted dying bill - remembering decades of being told that inner ear infections were all of my mind until almost too late, recalling a Dr refusing to let me have C sections with 2nd and 3rd children and nearly losing both due to terrible complications. And other stuff such as broken bones being misdiagnosed repeatedly as sprains until X-rays months later they have shown full fractures. Nowadays I’m told the opposite ie that I’m too stoical. I get told off for putting up with symptoms just because I’m so phobic about A&E or being admitted under observation. My experience of recent hospital stays has been diabolical! So far my hunches have always been correct but many of the doctors and surgeons I’ve been under have got things badly wrong - so I could never fully trust one now no matter how much I like and respect them!

I’ve only ever seen three consultants privately for one off second opinions and advice on treatments. All were top in their fields (endocrinology and rheumatology) and all three helped me by changing the route my care has taken for the better. Thus is why, if you do have symptoms of DM I wouldn’t hesitate to see an expert. However if your symptoms are really just inconvenient or relate to damage done by Stills I’m sure you’ll know deep down. Myositis patients tend to be unable to walk around for muscle pain and wastage from what I’ve gathered so symptoms just as serious as Stills. I think you’ll know but it’s not my main disease so could be wrong 🤞🏻. But don’t gaslight yourself please. Be confident and work things out for yourself and then go to GP with a short list of why you feel your symptoms could relate to Stills, DM or Vasculitis .. or even severe anxiety or menopause. Trust yourself to know your body and mind best please! X

[OldTed60 in reply to Stills]

ps here’s a reliable link to treatments - a friend gets Rituximab and MTX and swears by both at controlling her DM pretty well.

versusarthritis.org/about-a...

Merry Christmas to you too! 🎄

[misty14]

Hi again Stills, i can get bruises on my eyelids like your photo. They come and go!. It could be part of vasculitis or inflammation of the blood vessels. Has anyone mentioned that to you?. I do hope it all settles down for you soon. Xx

[Stills in reply to misty14]

I have no medical input except disinterest GP

[KayHimm]

Stills -

Have you considered going to a dermatologist? It is hard to believe that without other features of dermatomyositis you would get proper work up by a rheumatologist.

I have had CPK tests when shoulder muscles were painful during flares of connective tissue disease. They have always been normal. If you have any muscle pain or weakness, your GP could probably do this test.

If your GP does not see the value of a rheumatology referral you will need to see someone privately. The visit plus blood tests and tests that detect muscle inflammation will be expensive. I think you should discuss all of this with your GP before making a decision. They may think a dermatology referral is the best route.

I hope you get answers and start feeling better soon. Get a new GP if you are not satisfied with your current one.

Best of luck.

K

[Stills in reply to KayHimm]

Good advice thank you and worth considering. Unfortunately there is a shortage of GPs here and one is generally only offered a telephone call with a nurse. Despite having bloods warning of cancer in 23 and several procedures which thankfully did not find cancer, I have only seen a locum GP once in 20 months at my surgery . All tests etc were carried out by a nurse or similar. My city has a population surge but no extra Drs. We do have a new big hospital though.

[KayHimm in reply to Stills]

Well, if there is a GP shortage, there is likely a rheumatologist shortage. That seems to be world-wide. The nurse can make a dermatology referral. But if you have no muscle pain and weakness it is hard to imagine they will be suspicious of dermatomyositis. Stills patients get rashes too, so you want to know what is going on.

Nurses can be great advocates. Make an appointment and see what they recommend.

[Stills in reply to KayHimm]

Thank you