Hi .... Just wondering if anyone has had this alongside the cancer? Thanks .x
DERMATOMYOSITITS: Hi .... Just wondering if... - My Ovacome
DERMATOMYOSITITS
Written by
ricky23
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21 Replies
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Hi Ricky, I have dermatitis herpitiformas not sure I spelt that right
Dee X
Hi Ricky, is what you have the DH that responds to a gluten free diet? I'm a Coeliac and have to stick to GF food. Have heard about DH but never actually met anyone with it. Just interested ....
Love Solange
I suffer with nodular purigo nobody knows what causes it but it's often linked to conditions that effect your immunity.
Hi Ricky, I have four overlapping immune disorders, one being dermatoamyositis. I have random flare ups but have never been able to associate them with food/ behaviour. But most definitely noticed my skin can't tolerate the sun like it did , making it photosensitive . Last November I had two infusions of the drug Rituximab (an immune suppressant ) this can be successful in treating some immune disorders . I have a top up in may/June and remain hopeful. I'm also on steroids to help inflammation . What treatment have you been given/offered? & I hope you're coping ok xx
Hi Thank you so much for replying. Sounds like your having a nightmare time. Are you on top of it at the moment?
Ive only been offered Betnovate no one jg as discussed this with me. I had a letter Saturday morning ftom the Surgeon and he said in it because you have Dermtoamyositis back again ( never ever told it was that !! ) we need to do Ct scan. So I read up on it and terrified myself!!
Hope you are well... did you have ovarian cancer as well? take care x
Good to hear you have a scan date. You have every reason to feel anxious & I'm sure our state of mind affects us physically. Maybe consider seeing a consultant specialising in immune disorders, they may be able to explain in detail cause & effect and or offer some advice. Yes I had ovarian cancer & had a total hysterectomy last Jan. they removed everything. I was initially diagnosed over 2 years ago with Polymyositis (muscle version) & last year derma also. As with all immune disorders they can go into remission & for no apparent reason flare up! This
Is the case with me. My skin has calmed down since last Aug but it took until nov.. Rituximab suppresses the immune system, so hopefully it won't be aggressive enough to attack me in this way. You need some answers. Ask about your immune system. Did you have chemo? If so it maybe your immune system is recovering & stronger & has turned on you, causing the flare up?the Internet is full of info, but as you know it can be scary too. See & speak to someone & go with a list of questions.. I'll be sending positive thoughts your way for Wednesday .. Xx
Hi and Thank you all for your replies.
In December I developed a rash on my neck face upper arms and back. This rash is exactly the same rash I had in 2012 and weeks after was told I had Ovarian Cancer. The rash disappeared weeks after my surgery.
Now its back ive been to my GP and he says its Dermamyotois and my Ca 125 doubled in 3 weeks... although still under 35. Now got to have CT scan asap. I am convinced because the rash is same as before it means cancer is back!! What are your thoughts Ladies??
Also what can I do to relieve this damn rash its so hot and itchy ehat eith the menopause too!! Just eondered if anyone out there had this Dermamytosis ( sorry wrong spelling I think!!) With their cancer.
Sorry to ramble a bit!! Xxxx
I was diagnosed with dermatoamyositis before my cancer over 2 years ago . I had my tumours removed & a total hysterectomy during the onset of menopause. It calmed after my OP & flared badly last aug , about 8 months after. My consultant prescribed Betnovate steroid cream which eased the itch & soak in a warm not hot bath with oilatum may help too . May be worth a try.. Feel for you xx
Oh you have made me feel much better !! Thank you... I'm absolutely convinced it means the cancer has returned but you had a flare up and no cancer so I feel more positive. I am using Betnovate it certainly lets me sleep itch free through the night. I also take an antihistamine tablet evety night.
Ive read some scary stuff about this Dermatoamtositus and I dont have any muscle problems... just this vile purple/red rash. My face is sore but not itchy. I pray my CT scan will be clear but so eorried this rash will never go. Thank you for cheering me up ... had bad negative day yesterday.... silly I know but your mind goes mad sometimes!!! X
Thank you for posting this- i'm so sorry i cannot offer any advice but in the 6 months prior to my op i had 2 large 'scabby' areas on my face in front of my ears, they itched constantly and the doctor had prescribed all sorts of steriod creams - and non worked, One on my left side had started about a year previously but had been 'cut out' under local anaesthetic and regrown, but since my op both have 'disappeared' i just thought it was a 'fluke' now when iv just read up (thanks to ScardyCat's link) i wonder if it was connected? wow! hope your ok xx
Hi... I too read the link and helped me understand a bit more.
Its weird how yours disappeared but good!! Mine is awful at yhe mo but im hoping it will vanish!!
In 2012 we saw a dermatologist with this rash and back then she said it was serious ie Lupus or possibly cancer.... sadly it was cancer.
Just a waiting game now. We are indeed funny creatures!! Thank you for your reply its nice to know yhere are people out there!! X.
I have a friend who had this and was diagnosed because they looked for cancer. As a result, she was diagnosed at stage 1c. The dermatomyositis cleared up after her treatment for cancer.
That is exactly what happened to me!! Thats why im so scared as the rash is back so is the cancer?? Thank you for replying. Hope your friend is keeping well. X
Got a call today. CT scan on wednesday morning. Be glad when I know whats what!!
Now got my CT Scan date. Its on Wednesday so not long to see whats what. Thank you much for all your positive replies x
Hope it goes ok ricky, keep us informed and got everything crossed for you xxxx
