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 SjΓΆgrens , 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 .
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
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. πΈπΈ
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
Ha ha , a wee extra dose of worry today xx