Can someone explain what a low mpo and pr3 means.. Ive read up on anca etc and what anca etc is and fully understand.. But all i needto know is what happens if they are low.
Reasons im asking are
I adopted a sick child, who is now 3,shes been limping, swells up, painful joints, unwell, sweats, tremors, diagnosed with thyroid problems but they erre late seeing her said i was being fussy and she was fine, i demanded a knee xray as it will swell and go red and shes unable to walk or stand in it and she had a knee infusion..
I knew that simething wasnt right.. Shes on levothyroxine.. And iron medicine as its low and hasnt changed to any better after meds.. So i was just windering if these are LOW what does it mean for Kate aged 3
Thankyoy
I go on a bit but think ive kindof explained the best i can
Debra north wales
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Inkyann
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If I am understanding your question correctly, it means Kate has 2 types of systemic vasculitis. C and P ANCA. The interior lining of her blood vessels , are inflamed. She should be on some ant-inflammatory medication like prednisone, the dose usually calculated by body weight. "Low" is probably referring to the amount of antibodies showing up in her blood tests . They are in a blood test report in number form.
Unless pediatric vasculitis is treated differently, you must get her to a rheumatologist or to a pediatric rheumatologist if such a consultant exists to get her on prednisone , at least to see If she responds to it well. Response to Prednisone is usually within 2-3 days. If she needed iron, she is probably anemic , low red cell blood count.
That levothyroxine was prescribed, indicates she is also hypothyroid, but that will do nothing for for what sounds like inflammatory disorder with MPO and PR3.
The "low" does not tell much at all. The antibody numbers can go up and down and may indicate how active the illness is. Regardless of low or high, she needs more care and monitoring than what she has had to date.
You must aggressively demand an appt. with the right type of consultant. There is a helpline number you can call for people with blood vessel inflammation that can assist you with an appointment. If you browse the site, you will find it; hopefully someone will post it for you. I am in the States so don't know it off top of my head.
That sweet little girl deserves to be seen by a specialist ASAP.
Omg that is brilloant... Ibe jad no joy atall off anyone, my nearest endocrinologist is 150miles away, nobody has listened or cared, its so frustrating, ive begged them since 2years to refer her and in February last year i demanded this xray for her knee as they keot fobbing me off.. In may last year they said they wudnt see her as she was not an urgent case.. I went on and on till they saw her ib december then thats where they found oyt she had hypothyroidism, shes on sytron for her iron and they now refuse to give me her results kime ive had every blood test, its because im fully checking and have the answers.. She has been so unwell.. Vomiting, rashes, hives, acges, pains, swelling, sweats really bad, ulcers, limping, tremours, not quite at her target i wiyld expect her to be at her age, very thirsty, high pulse, typical thyroid appearance, fingers swell and toes... She would sleep alday but thathas got better, she plays alone.. Some things are strange like if her sicks are pulled up the elastic will mark her for days or weeks.. Her eyes hurt, backaches, headaches, earaches, her thyroid is fine but they say its not workibg like it should, whatever that means.. I really dont know what to do as ive begged over and over to refer me to rheumatology and the eye doctor but nothing...
Where do you live? Maybe the UK vasculitis hotline will help. I will bring your situation to attention of one of volunteers. But I think you must must use all your might to get Kate away from current health care into a kinder and more compassionate system for children. A little Prednisone, and I bet she would be running and jumping. Keep in touch. 🇬🇧🍧🍮💒🏩🎈💐🙋🙋from🇺🇸 for Kate.
Here’s a link to the Vasculitis uk helpline. Your daughter is too young and has too many issues for anyone to help on here. The helpline can point you in the right direction to look for help. Indeed they have been able to get help for children living in Wales in the past Good luck let us know how you get on. X
Thankyou so much, im so glad i came on here now its been a long two years for me, i knew from the start something wasnt right as ive had 3children myself and im also a granny.. Noone listens to me and is very fruatrating. They said her illnesses were due to her past before coming here to live
Anyone trying to escape medical duty because of a child with an origin different from Wales is discriminating. That cannot be excused. Kate is sick NOW and she is in the UK NOW. I hope advice from Mooka leads to something. May I ask where Kate is from? Hopefully, She will get care ASAP. vasculitis.org/uk can help.
Hi Debra, reading your post was deeply touching. I can't imagine the worry and stress you are experiencing right now. I was diagnosed with PR3 ANCA Vasculitis in November last year. Since beginning treatment, my anca levels have been decreasing. Your girl is so adorable & I pray she receives effective treatment soon. Please keep us updated
Also, Vasculitis can be present with normal blood tests, I believe known as sero-negative. Sero-negative can happen in most autoimmune or rheumatic diseases. Biopsy, even punch biopsies are definitive way to diagnose, but some symptoms, as with my late mom, are unmistakable. My endometrial and cutaneous biopsies were well over a decade ago. I cannot imagine a dear child suffering so...my Heart goes out to her and you! Prayers Up for Healing for her and strength for you...HUGs. (There are excellent UK Vasculitis Foundations, one even has a cabin or cottage for holidays.)
Hi Joy610, I'm sorry about your mother's passing. I was unaware of the term 'sero- negative'. Thank you for all the info. God Bless 🙏
This information is taken from the Vasculitis UK websit:
"Helpline Telephone:
0300 365 0075 - we try to answer calls between 8am and 10pm, but we are a small team, and on occasions you may hit our messaging service. We check for messages several times per day and will get back to you as soon as we can.
e-mail:
John Mills - Chairman and Helpline Support
Susan Mills - Trustee and Helpline Support
Post:
John Mills
West Bank House
Winster, Matlock
DE4 2DQ
We don't pretend that the Helpline is a 24/7 service, but we will endeavour to give you a prompt response and from somebody who knows about vasculitis and has personal experience of living with vasculitis."
Please contact them URGENTLY for your daughter's sake. XXXXXX
in reply to
So very different than U.S. 'foundations', which only want money and then more money. Oh, they have educational links and resources/pamphlets, but offer no actual assistance, even with transportation to appointments, for those who suffer, whether cancer, m.s., arthritis, vasculitis or any other disease or malady. St. Jude's, Shriner's and Salvation Army are the exceptions.
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