48 hours of mutations. Evening rashes are worse 🤷‍♀️ Or in my head

[Lisalou19]

Literally my body has been going through something so strange.

It started with small blisters on fingers, some not all that spread to the side of both arms. It itches like crazy.

Tonight my eyes and skin below is very sore, and my right arm is extra lumpy. Struggling to show the extent as my skin is dark so redness is reduced. Back of my hands are lumpy and quite frankly I’m just tired of having to deal with this without having anywhere to turn too when my skin is this bad .

Got to have a little chuckle, I told the rheumatologist on Friday that hydroQ was helping with my burning skin rashes 😂😂😂

[Roarah]

The finger reminds me of my eczema, I only get it on my fingers but my 12 year old gets it in patches all her body. Have you been gardening lately? Poison oak looks like that too initially before it blisters. Mine starts on hands and spreads everywhere but I am severly allergic to sumac and poison ivy. I always need predizone IV when I get a bout of it. Have you tried topical cortisone or calamine lotion. Both help both poison ivy or eczema rashes.

[Lisalou19 in reply to Roarah]

I did mow the lawn today but finger blistered started yesterday .

I have steroid cream here but my skin issues never respond to it but it does if I take oral steroids.

My skin typically goes through this cycle when my hormones peak and then subsided again until the next month.

I stand strong in the belief my hormones are making me sick 🤢 x

[Roarah in reply to Lisalou19]

I believe hormones are certainly a possibility but I usually try to rule out differentials too. People with autoimmune sadly are not immune to other illnesses and allergies too. is this similar to your other rashes? If not give the over the counter creams a shot and rule in or out two possibilities while awaiting you derm appointment. If it is all down to hormones sometimes there are no safe routes to help. HRT or oral contraceptive meds are ill advised for many with lupus. I am one of those so I always seek things that help me get by with it.

[Lisalou19 in reply to Roarah]

My rashes used to only affect my face, as the years have passed its started to affect other places. It comes and goes along with all my other symptoms.

Dermatologist agrees it’s an autoimmune response as when I was pregnant all these symptoms completely cleared up.

I had a full 3 day allergy screening at guys, everything negative 🙄. It’s good I had that screening done but I’m still left in this mind field of what is causing all this. Dermamyositis is the possibility but never have these skin problems this severe on day of appointments 😡x

[Roarah in reply to Lisalou19]

I usually go to my GP with all new issues and take it from there. Here my GP is the one who has given me steroid IV and oral script for itchy rashes. Maybe they can give an oral short term steroid of if necessary a IV.

[KayHimm]

I think you should see your GP tomorrow. You are still in the process of diagnosis and it would be good to have a doctor document the appearance of the rash. And you need to know if it is poison ivy or something else. Have you ever had these particular rashes before?

Look very uncomfortable! 😫

😘k

[Lisalou19 in reply to KayHimm]

My face rash is typical

My right arm is always lumpy and dry but it flares when I don’t feel right.

My hands are a new thing .

I will email them over today and see what is what x

[Lisalou19 in reply to KayHimm]

What’s strange is I wake up and it’s practically gone then starts again in the evenings. 🙄. Hospital thought it was an allergy but all negative. X

[KayHimm in reply to Lisalou19]

Good you are sending the photos. We can have a combination of rashes — some allergic, rosacea and autoimmune— so it is important for them to see all the photos. It is pretty common to rule out allergy when we present with these sorts of symptoms. Did they say “looks” like allergy or we need to “rule out” allergy? I remember the dermatologist being concerned about your extensive rash. Can you send the photos to him too?

Xk

[Lisalou19 in reply to KayHimm]

They wanted to rule out allergy and once completed said I need blood work.

It’s weird it doesn’t respond to anti histamines or steroid cream. But I can guarantee I always get these type of symptoms during my day 21 of cycle. I actually strongly believed I had autoimmune progesterone dermatitis, that’s how clock work my skin changes are x

[Crazy_Cat_Woman]

Hey Lisa....Things always get worse after you tell a doctor that you are feeling better 🤨.

I get similar lumps on my hands and lower legs. They itch like crazy and when I scratch them they turn into nasty ulcers and scar 😭. I just figure it’s all part of my UCTD.

[Lisalou19 in reply to Crazy_Cat_Woman]

My current diagnosis is UCTd. I kind of accept it but it really is so uncomfortable.

It worries me because the skin problems are getting worse and causing issues on parts I never had before.

My face today feels like snakes skin, very tough and dry. Does this sound similar to you?

X

[Roarah in reply to Lisalou19]

On my fingers my eczema always starts with itchy bumps than turns dry and scaly. My daughters does the same on her lips. Antibiotic cream helps when it starts to get crusty for my daughter. If it is eczema, the skin barrier is weakened and the scaling is actually sometimes from staph infection getting through and infecting the area. My daughter has a script of muciprin that heals it in a few days. My eczema is worse during periods too but not every month for some reason.

[Lisalou19 in reply to Roarah]

I did suffer badly as a child with eczema on backs of my legs. I’m open to anything but none of this explains the fatigue and knee swelling that comes each time I get skin rashes.

My dermatologist has not seen these new manifestations which I will show him when I go.

The whole of my face produces and burning skin rash with swelling, normally get nasal sores when my face is that bad.

I just find it frustrating that there’s no where to go when you feel this rough 😖

[Roarah in reply to Lisalou19]

Eczema in the last few years has been recognized as an autoimmune inflammation seen in many connective tissue diseases. Smokers are at a greater risk as adults. My DD's pediatrician and my GP offer scripts for treatment that work better than over the counter ones when we have had flares. The crusty dry skin might be infected so it is worth letting your GP treat you while waiting to see the dermatologist and rheumatologist.

I think sadly with autoimmune there is not one treatment for all the symptoms. We sometimes need to treat each symptom separately as they come up.

Oh edited to add that cerave lotions that offer a barrier protection have helped us prevent flares greatly.

[Lisalou19 in reply to Roarah]

It’s so hot today so I’m hiding in my black out bedroom. It just feels awful living like this. X

[Roarah in reply to Lisalou19]

Heat aggravates skin rashes too :(. I am happy for our temps are only in the low 80s today ( 28c) Do you have a triple antibiotic cream at home? Maybe try a small amount on your fingers or arm to see if it responds at all.

[Lisalou19 in reply to Roarah]

I only have steroid cream.

Having a shower soothes it loads, so I keep doing that.

Each month I feel like I’m going to spontaneously combust !!! Hey I’m still laughing so I recognise I coukc be much worse x

[Roarah in reply to Lisalou19]

Only warm showers hot causes worse drying. Have you mentioned these rashes to your gyn? Have you had an internal ultra sound lately? Ovarian diseases can cause various rashes, including malar rashes and extreme dry skin.

[Lisalou19 in reply to Roarah]

Oh gosh don’t tell me that!!!! I think that’s the only department I’m not under at the minute 😅

I have a connective tissue illness of some sort. I’m sure it’s not a gynaecological problem, but hey who knows 🤷‍♀️X

[Roarah in reply to Lisalou19]

In America we go yearly to the gyn and I find my gyn to be so helpful over all. It was my gyn who noticed my malar rash and protein in my urine and sent me towards my diagnosis and treatment for lupus. Here many METs is often found through gyn aswell. I think with your cyclic symptoms and dermamyositis ( seen as a presenting feature in ovarian neoplasm sometimes) a gyn visit is warranted to rule out an ovarian cyst.

[Lisalou19 in reply to Roarah]

I feel like I’m not being heard and if I am I dont sense it.

I see a gynaecologist years back in my search for answers and he offered an estrogren patch for depression!!! I asked about the skin rashes and he said I’d have to get used to them 😱. I could never get used to them as it’s an intensive burning sometimes I even get blisters . I declined the patch as I felt no point trying to solve half the puzzle!!! That was approx 5 years ago x

[Roarah in reply to Lisalou19]

I think the predominance of female patients links gyn and autoimmune diseases. Furthermore breast and ovarian cancers are seen in higher numbers in connective tissue diseases. A causation has not yet been proven but the fact that there is a corralation to me means I want mammograms every 3 years after 40 after yearly after 50 and yearly gyn exams to help find any cancer if they should pop up earlier than later. If gyn visits are offered to you it is not a bad idea to stay ontop of cancer screenings offered. I think it can wait as I think you mentioned a negative ana at one time? But going forward gyns are an important part of your medical team. Polymyositis with or without autoimmune disease is very linked to ovarian diseases.

[KayHimm in reply to Lisalou19]

You do have quite an array of skin rashes. The dermatologist just has to use all his brain cells the day he sees you. You are not a typical case of a kid getting poison ivy from playing in the yard. But that is why he went to medical school. Maybe he will have a better idea of what the various rashes are from and offer new treatment. Keep a record of the symptoms so that he can see the possible correlation with hormones.

When is your neurology appointment? I still think they are waiting on that to decide on a medication. The junior doctor did offer the prednisone. He knew you were sick. Hoping they can get you on a combination of medications that will help these awful rash along with the other symptoms.

😍k

[Lisalou19 in reply to KayHimm]

That’s all I want, medication to keep this more stable.

I will keep plodding along. This will pass in another day or 2.

For now I am relaxing on my bed hiding from the one thing I loved ☀️

I understand how difficult the sun issue is for you. X