LUPUS UK
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Change of diagnosis 😲

Hi all , im posting today about my son who is 25 , he has been under going tests because of shoulder pain and swelling , large plaque on upper arm with loss of tissue and swollen areas under arm and on chest . He was referred to rheumatology and has had blood tests , mri and ultra sound scans , they called in dermatology who initially diagnosed scleroderma but wanted to do a biopsy and more bloods . He was back at dermatology for the results today and he has be given a new diagnosis of lupus profundus which i have never heard of and can only find limited info about it . He will be starting on the same proposed treatment, methotrexate and steroid infusions with an addition of plaquenil as using it in conjunction with methotrexate might mean he can be on a lower dose. I am a bit gutted as I feel its my fault that he has an autoimmune disease as i have Sjögrens , I just need to get my head round it all .

I would be grateful if anyone could give me info about this type of lupus and if they have had similar treatment. My son is very quiet about it , he justs want to get on with the treatment and not talk about it . Im the opposite so if anyone has info please bring it on .

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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

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Oh you put it so well whisperit. x

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You are very kind whisperit , thank you for your post . From what I understand lupus profundus and lupus panniculitis are the same condition and it not very common , hense the lack of info . It is difficult when something involves your children , even though this one is 25 , he has battled with depression and is doing well , i would hate this to cause a set back , so our support is even more necessary. I will do some more googling but you always find the worse cases . I hope you are keeping well at the moment, best wishes xxx. 🌸🌸

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Yes, doesn't parenthood come with two huge gifts - love and worry? Wish there was a way to make it all come out right. x

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Ha ha , a wee extra dose of worry today xx

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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

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Thanks louise 😀 just a bit down about it which doesn’t help , what we need to do is manage his condition and find best treatments. Is dermatologist is lovely and full of info at a very quick pace , so just need to process it . He is also under the care of my rheumy who is also very good so all of that has to be positive. Thanks for the hug , it helps , best wishes and i hope you are well xx

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You have good dermy/rheumy so that's a real positive. I am sure you are a bit in shock right now. Depression can come with AI issues so maybe when things are under better control it may help that also. It is usually harder to get the guys to talk than the girls, so great that he has a mum like you to support him. Lou xx

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I have 3 boys and he is my quiet one , the other 2 can be heard a mile off . I will maybe discuss this with the rheumy at nxt appointment in September.

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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.

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Thanks wsjkcj1 , it’s terrible to think this way as I look at my other two and worry every time something is wrong !

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"Worry does not empty tomorrow of its sorrow, it empties today of its strength."

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That is an unbelievable quote , i am going to write that down and save it . Do you know who said it , because they are very wise 🧐

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no idea! I just saw it on something I was reading one day and it stuck with me. I try to recite it to myself when I'm worrying too much about things i can't control. I do hope your son starts showing improvement with the meds.

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Thanks , he will start on the plaquenil tomorrow and the methotrexate next Friday. I hope like me that he has a good tolerance of the meds and doesn’t get side effects

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With THANKS to wsjkcj1, i just did a search and discovered this wonderful quote is attributed online to the famous Dutchwoman Corrie ten Boom...she & her family helped many many to escape the Holocaust:

en.m.wikipedia.org/wiki/Cor...

Here are more of her wonderful, inspiring sayings:

brainyquote.com/quotes/corr...

Am greatly feeling for you & your family, dear WV...you probably know some of my story: my mother hid my infant onset lupus diagnosis from us for over 50 years through decades of relentless progressive multisystem debilitation and emergencies until 2011 when the NHS finally figured out i must’ve developed lupus very early...at that point, ma readily admitted the diagnosis and explained how it had come about, but she has never seemed regretful, and never been able to tell us why she kept this secret. I think there were actually several overlapping reasons, and i guess i understand them, sort of: ma has always been a very troubled person, and i do love her + have been/am caring for her since our father died over 20 years ago. I have total respect & admiration for the way you and your family are facing this together. And i am very grateful to you for sharing this with us....I hope you’ll keep us posted.

🍀❤️🍀❤️🍀❤️ coco

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You will not believe this Barnclown , Cornelia , the author of the quote was. born /died on 15 April , which is my birthday 🤪 how weird is that !!!!

I think 50 years ago there were more taboos over chronic illnesses , and some things were not discussed. Now we know early diagnosis is essential to try and nip some illnesses in the bud or control things as quickly as possible. Best wishes Barnclown xxx

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OMG 🤗: WOW: you & Corrie 👭!

👍 you’re interpreting my mother’s behaviour pretty much the way i interpret it. these things are what they are...the funny thing is: while we grew up, ma lectured us at least once each day that “Communication Is Always VVV Important!” 🤷🏼‍♀️😘🍀

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Sometimes communicating with your own family is the hardest thing to do 🤐

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🙄 TOO TRUE 👍👍👍👍👏👏👏👏

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Sometimes families can be a puzzle. Its great when they pull together though. You have a big heart, Lou xx

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Yes, definitely: a puzzle! Thanks dear lou!

When we were vvvvv little, our father first told us siblings, and continued to tell us often as we grew older, that we must forgive our mother for her worrying & frightening ways because she had had a dreadful childhood. He was right: she really had had a dreadful childhood. And life growing up with her was scary a lot of the time. But it just felt natural to forgive & love her ...

So, when i read poignant posts here from mothers who are anxious about the effect of their illness on their children, i do feel as if i more or less know personally, from my own childhood experiences, that children can & do understand and forgive.

And when i read posts here from mothers, like WV, who are concerned about their youngster’s AID diagnosis, i’m v grateful, cause these mothers help me better understand the mix of feelings my mother probably felt about my infancy AID diagnosis....she has never been able to talk to me about this. Instead our dear forum friends are “talking” to me about this...which helps me a lot.

Thank goodness for LUK & our wonderful forum! 😘🍀😘🍀😘🍀

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We are all here to support each other xx

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👏👏👏👏🌟❤️🌟❤️🌟❤️

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I think we can find so many positive things to share with each other despite suffering awful health too. Healing emotionally is important too Lou xx

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Lou, i think & feel you’re really, truly, madly, deeply DEFINITELY right about this XOXO

🌈💫👍👍👍👍💐💐💐💐

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Hi Wendy 😊🌸🌿🦋

Love you. EvaJo

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Hi Honeybug! How are you lately?

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Hi sweetie. Thanks for asking...lots of problems but pushing through as usual.

I’ve missed talking to you so much. Think of you so often.

How have you been doing dear.???

Have the wildfires finally stopped there??? Been hot and dry like most of the country???

So good to hear from you again.

Xoxoxo

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I'm doing pretty good at the moment. I was going to say the wild fires stopped but then another massive one blazed up in California again. I wouldn't live there for anything in the world. fires, earthquakes etc...... We only have tornado season to worry about here in Oklahoma. :) Hope your weather is good.

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You could try Ireland where we get 4 season in an afternoon!!!! Can’t complain today as very pleasant at the moment 🌞

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I'd love to visit Ireland at least once! It's usually pretty chilly there though isn't it? I for sure need to live in the south because I have to wear a sweater even in the summer time here if it's under 80 degrees. :)

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Oooh dear , you might need 3 sweaters here as at the moment it is 65 degrees here , though i feel that’s warm.i It was up in the 80s a couple of weeks ago which was really unusual!

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I would not survive! LOL I would actually like to relocate to Mexico someday but until I win the lottery I have to stay here and keep my job. ;)

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You would love it after a while , much better for the complexion ha ha xx

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Sorry about my delayed response my hubby is very ill and I’m on nursing duty till he recovers.

I’m so glad you’re doing pretty good. I was concerned about you since I hadn’t seen your posts lately.

I’m so glad the fires near OK are out. I’m so grateful that we don’t live in California too. I wouldn’t even visit for fear of those natural disasters.

We have tornadoes 🌪 and dangerous thunderstorms all the time. Flooding and wind damage is big here too.

I feel safer here than anywhere else.

Gotta go now dear friend. Let me know how you’re doing occasionally okay???

Take care. Hugs 🤗 love 💗 and kiss 😘

😊🌸🌿🦋🙏

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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

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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 .

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I really feel for you W. It’s hard enough thing trying to research and manage our own health conditions - let alone trying to help our adored children.

My eldest son (26) has Aspergers, is OCD about food and I suspect is a bit bipolar. So I do understand how it feels to worry about them and their health and well-being.

But it’s not in anyway your fault or mine that these things show up. We love them and only ever want what’s best for them so put the guilt out with the rubbish please. Xx

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

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think i have now twitchy 🙂, ive got over the low point for now , in fact im amazed at how well my son is dealing with it at the moment, i dont know if that will change once he starts on meds . The dermatologist was confident that it should halt the progress of development of the plaques , he just has one large on on his arm which hasleft a hollow dent . Apparently they can develop on the face so hopefully this can be prevented. I have been reading your posts while i was on holiday , hopefully you are making progress in finding out the exact cause of some of your problems , fingers crossed for your neuro appointment that you get a expert and pleasant consultant xxx

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Had to send reply to myself twitchy ha ha

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Sometimes the workings (or failings) of HealthUnlocked defeat me too W.

I’m so glad that you and your son are taking this in your stride to such an extent. Hopefully hitting this form of Lupus hard now will get it very well controlled. He’s probably just feeling relieved to know what it is and that it’s going to be treated at last. You too.

My firstborn has just phoned in a state of extreme happiness because he’s finally got things sorted out at work.

Due to his Aspergers and sense of loyalty he was doing three of his small company’s jobs 24/7 and cracking up physically and mentally. Which was really worrying us parents and even his brothers were concerned about his state of mind and physical health. His neck and back have been really bad and he’s been getting Valium and naproxen off his GP.

But at last he’s been able to appoint new staff himself and train them up to take over the two jobs he found most tedious and is able to focus on managing the firm’s strategic development.

So he’s gone from phoning us most nights on his way home late in a state of abject gloom, anger and exhaustion to phoning us on his way home from a night out with his staff just now sounding happier then he’s been in many months, maybe years.

So of course we are now happy bunnies too! Parenting is as much a rollercoaster as autoimmunity I often feel! Xx

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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

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I know. I find that trying to support my three young adult sons in their efforts to get through studies and find jobs, plus thinking about 2 dogs and my husband as well my own stupid health all take up so much emotional energy and time. I can’t imagine how I will ever manage to be an artist again! I’ve just about got enough energy to watch a bit of tv and then collapse into bed each night. I’m sure you’re the same. Xx

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Definitely! It’s difficult enough sometimes just getting though the day without added traumas or dramas , but , you do deal with it and carry on . Afternoon naps help 🙂

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Afternoon naps are definitely my best tonic too! X

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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.

😊🌸🌿🦋🤗💗😘🙏

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Thanks honeybug 😀 there is no point in fretting about things beyond our control, he is such a quiet lad and he doesn’t complain much , i just never imagined that an initial sore shoulder could end with this diagnosis. When he went to the gp first about 18 months ago he was told that he had been over doing the weight lifting!!! We had to keep pushing and going back to the gp who eventually did bloods to get to this . I hope you are keeping well yourself at the moment xx

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Welcome weathervane.

I’m glad you’re not fretting over his diagnosis. Dealing and coping with it is the key.

Again I’m sorry about the turn of events. I pray that he will always get the good and proper care he needs and will have a good life. Also that you will be given wisdom and direction how to help him as needed.

I hope you’re doing well yourself.

Thank you for asking I’m okish.

Take care best wishes dear.

😊🌸🌿🦋🤗💗😘🙏

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Thanks honeybug , take care and have a good weekend xx

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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

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Thanks Melba , you and your family have been through a rough time , it’s wonderful that your son has made a good recovery, I hope you are keeping well yourself at the moment. It is essential to have a good doctor behind you other wise you can be passed back and forth for years with no diagnosis or treatment. Best wishes 😀

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Thank you sweetie you too xxx

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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

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Thats a good point shauna , i have been able to understand most of the dermatologists explanation as i have been though a similar process. I hope your daughter gets a diagnosis soon , at least then you know what you are dealing with, best wishes x

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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.

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Thanks for that bedbound , at the moment my son is coping with the pain and doesn’t want to use pain killers . I think he will probably wait and see how things go with the methotrexate and discuss with the rheumy in September. 🌸

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We’ll that is a pain blocker from within the brain not a typical pain reliever. There are many others but that one usually does the trick. Good luck.

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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...

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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 .

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