At a loss, multiple consultations still no answer...any idea?

This is what I found on butterfly rash on the internet: It is often seen in lupus erythematosus. More rarely, it is also seen in other diseases, such as pellagra, dermatomyositis, and Bloom syndrome.

Hello @terri672.
When I went for a consultation with a dermatologist they diagnosed me with rosacea. As I've not been out as often due to how I've been the rash isn't as severe as it was. So it would seem that the sun triggers it. I do think there's more to it - where a rhumatologist would have a better chance of diagnosing it.

I’m supposed to avoid the sun due to one of my anti rejection meds, as it can contribute to skin cancer. So, typically I do. But I’ve been working in my garden in the early morning and later afternoon, when the UV is lower. I developed a rash over my arms both times. I discovered that Sjogren’s can cause it. So, maybe rashes are one of those odd things that can occur with different autoimmune diseases?

Glad yours is better!

It really is life changing, it's awful how you can't do what you want to do. I'm similar in that the heat and or the sun exacerbates my symptoms. So these days I won't venture out until dusk.

Or perhaps the UV causes autoimmune diseases to those who are susceptible? When looking back at old photos from 12-16 I'd only go out for a few hours to play football where no rash was present. From 16 to 22 I'd play golf most days, this is when the rash started. It could just be a coincidence with time and age but it does make me wonder.

I'm sure we'll get it sorted, hopefully those that see us will have the knowledge we require.

I had a similar rash to this, all of these symptoms plus random bruising, every joint hurting, muscle spasm, cyst or moving calcium build ups moving in my body, brain feeling like it is on fire, chronic 24/7 pain and more symptoms than I can think of right now. I owe everything to where I am for finding a psychiatrist who wanted to do an Organic Acid Test and testing for Mycotoxins of Mold (other biotoxins are on there too I believe). Part of my issues are that I’m part of the 25% of the population that can’t rid it’s body of toxins.
Look up Neil Nathan MD and see if there are any doctors he recommends near you or Ritchie Shumaker, I’m thinking you could possibly have CIRS.
I had a western doctor/Acupunturist tell me this week that when your liver or body can’t process something one reaction is through the skin via rash, sensitivity etc. My dermatologist did recommend Niacin flush free which to then find out via blood work and then in my Organic Acid Test how deprived my body was of B vitamins (even though I was taking some but my gut wasn’t absorbing half or most of the things I consume.) The test then showed a million other reasons of what was wrong with me, sibo, candida, high dopamine levels, and a slew of other issues. Which all at least validated why I felt like junk and my doctor(s) and NP are helping navigate how to make me feel better a little each day.

I think that working with a rheumatologist is key, although I’m indebted to the neurologist for suggesting Sjogren’s. Now, I’m hoping I am on the right track. And, hopefully this path will bring you answers as well!

The rheumatologist said I was definitely given “bad genes.” What I’ve read is that a lot of what influences what diseases we get are our genes.

These then have “triggers” which may set the “bad genes” into action. In my case, both PBC and Sjogren’s can be triggered by infections, including things like giardiasis. Unfortunately, I contracted this three times and had the first episode, 15 years ago, for nearly a year as my physician didn’t correctly diagnosis it.

I think there does seem to be a correlation with things that make our symptoms worse, like the sun and eating high levels of carbohydrates. It’s definitely a challenge to figure out what affects us individually and what works to treat us and our symptoms. Right now I’m sticking with eating well and walking 2 or so miles a day. And of course researching and waiting for my next doctors appointment!

That's good to hear, very inspirational indeed.

In retrospect we always try to justify what's happened to us. Where if we'd done something differently we may not be as we are, but often there's very little that could be done as it is ultimately down to our genes.

I must say if you can navigate the internet long enough you'll stumble on some gems. I found an interesting journal regarding low folate in patients with lupus.

I no longer believe I have PRS, but lupus and linear scleroderma. Again not certain but I'll definitely suggest it when I see a rhumatologist.

Fingers crossed for your next appointment.

I'm sorry you're having to go through that, it must be awful.

I've not heard of that before so I'll definitely look into it. Unfortunately, it seems that there aren't any practitioners nearby.

It has been awhile, I hope everyone is well.

I recently visited a rhumatologist and I must say that I was rather impressed. I had a full examination checking my nerves and reflexes. He did not find any cause for concern. However, he was unable to identify the cause of my facial atrophy and pain and was concerned though put it down to malabsorption/hormones.

I've been partially diagnosed with chronic fatigue syndrome, Sjogren’s and scleroderma though further testing is required until he's certain. He's wrote a letter to my gp discussing what needs to be addressed. He has requested I have a full urine and stool sample along with seeing a gastroenterologist. Given my financial situation I've decided that in the meantime it's best to go down the NHS route as after discussing the cost involved he stated that I should avoid private care unless I have medical insurance which I do not unfortunately. I still intend to visit mayo but have cancelled my appointment for now. I'll go as far as I can with the NHS and then if nothing improves I'll go to the best.

Good morning @change25 . I’m so glad that you’ve gotten some answers. Was the rheumatologist with the NHS? Have you been able to make any more appointments?
And keep doing what you’re doing—you’ve been successful so far! And we’re all right behind you! Becky