My daughter has adult onset stills ..diagnosed November last year.she has been quite unwell and had everything given to her under the sun.she is now on anakinra inj ,methatrexate,and steroids and boatload of analgesics.she has suffered with the pain in her left hip since diagnosis and I have watched her hobbling to university pulling a shopping trolley as she is unable to carry her books.finally her rheumatologist said she needed an MRI to rule out a vascular necrosis .
They found a 18cm tumour thought to be cystic but of unknown origin.my daughetris now on cancer pathway waiting major surgery to clarify where it comes from.she is 19 .
Message is don't let them tell you it is simply your disease as we have found out it may be something else
Simply out of mind with worry
Written by
enaid
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I'm really sorry to hear that - what a difficult thing to deal with for all of you. Your daughter is so young too and already dealing with complicated health issues - I will be holding you both in my thoughts.
Thank you both.Life does throw you a curve ball now and then.I have personally struggled with her original diagnosis and now this.however she should be in theatre soon..pre admission clinic Monday then fast tracked I believe.
Simply feel a cautionary note to everyone not to be fobbed off.a lot of her symptoms were put down to Aosd which now may not be the case.will let you know how it pans out
I hope ev1erything will go well for your daughter x
What awful news. My heart goes out to you both too and I'm sending gentle hugs, prayers and best wishes.
Hello
She is, sadly going through the mill, sometimes family can feel the pain a loved one suffers and has to show strength to the person who is suffering. Your daughter needs your strength and understanding to get through this difficult time
Thinking of you all, and maybe that grey cloud will have a silver lining, we are all here for you, but you will all cope no matter what, you have each other and LOVE xx
Oh my what can I say that the others haven't already said but I really hope that everything turns out well for your daughter. Stay strong as I'm sure you will, sending you a big hug with some empathy. Xx
Daughter attended per admission clinic yesterday and she is going into surgery Tuesday.very relieved to have plan .does any one know if she should stop the anakinra and methatrexate..we are worried about her flaring .waiting hospital to ring with advice
Thank you all for advice support and well wishes x
Hospital have advised stopping the methatrexate and anakinra for at least 1 week over her surgery. I am a little worried that with all the stress and no drugs she may go into a flare.that would be really awful .whats everyone's thoughts ? She will still have her steroids which will. Be increased during theatre
So sorry to read what your daughter is going through. My thoughts and prayers are with you both. 🙏🤒 The doctor or hospital should be advising as to what meds you should stop and for how long. Just ask if they don't.
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NEAR DISASTER STRIKES! COULD HAVE BEEN MUCH WORSE!
12 Year old daughter +RF- IgG 92.9 IgM 20 IgA 24.8 but CCP Negative - but many symptoms of RA - DR. thinks we are crazy.
Sorry to have to tell you.
