Change of diagnosis 😲

Hello weathervane, I know nothing about this, but from googling, it seems that it is also called - or is closely related to - lupus panniculitis. There seem to be lots of articles on the web about this eg this one is detailed - but of course I have no idea how accurate or up-to-date it is. dermatologyadvisor.com/derm...

On the issue of guilt, how can we know what we pass on to our children? And almost every condition is a result of a mixture of genetics and environmental influences, so it's impossible to point the finger at one thing, far less one person. Besides, weren't you even more responsible for giving your son love, care, helping him to understand kindness and generosity, determination and courage and all those other qualities....? x

I do not have any knowledge of this and sorry to hear your son is poorly. Hopefully with treatment things will turn around soon. Never anyones fault regards getting these conditions, its just how it is. Years ago they were not even being picked up and now we have better treatments too. Big hug to you both, Lou xx

Hi WV,

I'm sorry for the unfortunate diagnosis but the good thing is that he has one and can now be treated properly! My daughter is now 25 years old and I worry she could develop something similar to mine. You had no way of knowing you'd develop it yourself till long after you have children though so you could not have known and I'm sure he doesn't blame you in the least. Don't punish yourself. Just be there to help him when he needs it.

Hi weathervane

I'm sorry I don't know anything about lupus profundus!. I'd just like to say I'm sorry you and your son are being put thru the diagnostic mill at the mo!. It's hard when diagnoses change but I'm glad the treatment is the same and they want to hit it hard to stop it worsening!. Of course as mum you feel guilty at what you might have passed on to him but on the other hand if your mum passed it to you it might have skipped a generation!. That's what happened to me and he would have had it anyway!. Do hope you both feel better about it soon, it's a lot to take in!. Take careX

Thanks misty for your kind words . Its a bit of a lottery as to what pops out of the gene pool . My mum was never diagnosed bit I believe she had autoimmune disease as well .

Trying to post a long reply but it is refusing to send , I copied it and will try again LOL

Had to send reply to myself twitchy ha ha

It is so important to get a life balance. My oldest also had a meltdown due to working too hard , not getting work off his mind and missing home . He came home for a week and iis trying to work less hours , je also need to find another outlet so im nagging him about that . I hope your son is more relaxed now with the extra help xx

Hi weathervane 😊🌸🌿🦋

I’m so sorry about your son’s diagnosis.

I’ve Googled it and there are several sites to read about it.

I hope this helps and best wishes for his care.

Please don’t feel guilty about any genetic component to his condition. With time and wisdom we learn about the conditions but that wasn’t something that was known at the time you had your son.

My family history in the 1600s is a genetic horror story. They didn’t have knowledge of genetics then and i cannot blame anyone for my health problems.

So please toss that guilt out with the rubbish dear.

Best wishes for you and your son.

😊🌸🌿🦋🤗💗😘🙏

Oh it’s so much worse when it’s our children than when it’s us isn’t it? Like everyone else is saying please don’t feel guilty, a psychologist colleague said to me last year (when I was consumed with guilt about what I’d put my children through having neurolupus this year and having ‘given’ them autoimmune and immune problems) and he said guilt is a useful emotion only if you’ve done something wrong and can change it for the future, never feel guilt for something that you cannot control and is not your fault and that’s certainly true in your case. It’s hard though, I worry a lot about the genetic legacy I’ve given my boys (although I then ‘blame’ those further away ancestors because the dodgy genes didn’t start with me!). One of my sons had an awful autoimmune disease, guillain barre, where he was paralysed and incontinent, just on starting secondary school. I’ve been really ill at times with the lupus but nothing compared to the emotions on seeing him suffering so much BUT he was totally emotionally undamaged by it and, although it took several years, is now ok. He is a very resilient cheerful young man now and nothing ever upsets or hurts him - and I’m sure that’s because of the challenges he faced so there are sometimes positives (even though of course it’s hard to see in the early days and it would be much better for none of us or our children to have these diseases at all).

It’s great you have supportive kind proactive rheumy and dermy. Hopefully the treatment will have a big effect. Good luck to you both xx

Thank you sweetie you too xxx

Hi there, I have met one person who has the same thing. I believe it's very rare presentation, form of lupus and it can affect the skin and tissue, muscles as well. I am going through the same guilt with my daughter as she is getting worse but no diagnosis yet. I have lupus and connective tissue disease possible scleroderma. My mum is also the same as me. Only comfort is that we can be there for our children as we understand what they are going through x

I have Tumid Lupus which has similar features of what your son had but not others. I did find this one interesting so I have copied some sites for you to visit. Maybe you have already been there but it does say if he is in pain to use Gabapentin. I use this drug not for that specifically but it works good.

patientslikeme.com/conditio...

Good luck 🍀 and I will keep searching, but they also have a place to sign up on this site for regular info and updates.

Hi weathervane,

This is what The Lupus Encyclopedia says about lupus profundus;

"Another form of CCLE [chronic cutaneous lupus erythematosus] is lupus profundus (also called lupus panniculitis). This form of CCLE appears as firm, tender areas under the skin, especially the upper arm and thigh areas. It causes inflammation of the fat underneath the skin ("panniculitis" means "inflammation of fat"). Often there are no skin changes at all. At other times, there may be a discoid lupus-like rash on the surface of the skin with pink, dark, and/or light colour changes. Sometimes lupus panniculitis can be quite painful, unlike most other rashes seen with lupus, which do not cause discomfort. Often these rashes are accompanied by DLE [discoid lupus erythematosus] lesions. If left untreated, they can cause the loss of tissue (especially fat) under the skin, leaving permanent areas of indentation in the skin."

This page on the Lupus Foundation of America website may be helpful - resources.lupus.org/entry/skin

You may also find our booklet about skin involvement in lupus of interest - lupusuk.org.uk/wp-content/u...

Thanks Paul for your post , that info is useful, though at the moment I can’t get my son to read the info himself so I will just have to get informed for him . Best wishes .