I have a daughter with this autoimmune disease, I was wondering if anybody out there has or knows anyone that has this, thanks Christo.
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Hi Christo @christol, It must difficult for you as well as your daughter trying to navigate such a rare condition such a Takayasu Vasculitis. While we wait for members with experience to join the discussion, I thought I would share some references on the condition.
Here's a YouTube video from the Vasculitis Foundation on TAK – https://youtu.be/qKGWrF4Nwdw
"With Takayasu's arteritis, the aorta and other major arteries become inflamed. Over time the inflammation causes changes in these arteries, including thickening, narrowing and scarring. Not everyone has these early signs and symptoms. It's possible for inflammation to damage arteries for years before you realize something is wrong."
— Takayasu's arteritis – Symptoms & causes: https://www.mayoclinic.org/diseases-conditions/takayasus-arteritis/symptoms-causes/syc-20351335.
Do you mind sharing when and how your daughter was diagnosed with Takayasu's arteritis?
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First thanks for your response and information. It took around 5 years and many Dr changing and a mistake by a cardio Dr. So we found a fantastic immunology Dr she took it guns blazing weeks of testing and full body scans she is relentless she also put us in touch with a Cardio specialist absolutely fantastic Dr. She is fully functional full of constant pain it is quiet advanced lots of meds some change weekly they are doing amazing trying to keep her alive. That's it in a nutshell. Thanks again for responding.
How old was your daughter when you first noticed that something was wrong?
You mentioned that she is in constant pain- how is the pain managed?
It is a very difficult illness- I once helped care for a young girl with Takayasu’s arteritis. She was stable and functioning well on medication with regular monitoring.
Happy to hear that your daughter now has excellent care and hope that one day they will find a perfect medication for her.
Thank you so much for your response. It was when she was 25 we all new something was wrong and 29 when we revived the diagnosis. High doses of
prednisone and was on a cancer type of IV for several months, discontinued, I don't remember the name she is now on Remicade IV every 3 weeks she takes a variation of 18 meds daily that's the limit DRs will go some days better than others, we take what we can get. Again thank you for responding.
I am so sorry your daughter and you have had this nightmare journey. I also have Vasculitis, however it is a difficult form. I have Polyarteritis Nodosa which affects the medium arteries everywhere in the body except the lungs and heart. I’ve been blessed with a mild case and am doing well.
I pray that your daughter continues to receive the treatments she needs to keep her strong. And for you mom, I pray that you will continue to be blessed with the strength you need for yourself, and your family.
Sorry for the late response from me. And thank you for responding, Can I ask you have tried anything that works for you again thank you for your response
The only thing that helps for pain is prednisone.
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