Hello – looking for any food links regarding Vasculitis – Wegners disease – it’s such a new diagnosis – and also very difficult to research – any ideas ?
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Becky, I think you might be referring to this recent AARP article:
– The Rising Toll of Autoimmune Diseases in Older People https://www.aarp.org/health/conditions-treatments/info-2021/autoimmune-diseases-rising.html
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Great read! Thanks for sharing
Thank you for posting
It is a difficult decision to discontinue medications, however I understand. My first autoimmune was Sarcoid in 1977 after giving birth to my son 6 months earlier. At that time steroids were really the only treatmeant for the immune system and then trying to manage the organ problems such as breathing treatments for the lungs.
In 2007 my 20 yr old daughter was diagnosed with Crohns. That was the first time I started to find out information on the biologics and immunology suppressants.
After so many health problems from the medications taking her to death door, we decided the side effects of the medications were worse than the illnesses. She continued predisone slowly reducing from 300 mg to 20 to 30 mg a day. Even tho the prednsone has caused severe bone death in one foot and other bone and teeth problem the other health problems improved. She is up and down but the low blood count, liver function, cancer scares , abscesses and more are not there from the medications.
Again it is not an easy decision and I am not ADVISING anyone stop their medicine!
My daughter started researching alternatives and is now almost has her degree in Integrative and Natural Alternative Medicine and licences Health Coach.
She is involved with several organazitations and groups and if you are anyone is interested in her knowledge and research send me a personal msg and I will forward you the information.
I am not soliciting for business, She is an amazing resource and has learned because she had been living this with my Mom, her Mom and herself. Can it stop before my 3 Granddaughters reach 20????
I have vasculitis and not sure if Wegeners has been positivly identified in me. But I am firm on the stand I take that no prednisone will I take. I had PMR and took prednisone for 13months and it did such damage and I put on so much weight I didn't recognize myself in the mirror. I've been off of it for 5yrs now and have gotten to a normal weight. My bones have suffered and I have high blood pressure but it is still better. Now if the medication I am on isnt helping that's it! I wont take prednisone anymore. I'm posting this so others know the dark side of this medication. I'm on Nucala at the moment 3 mo in and hope it will make a difference. I hope the best for all who see these posts. For me its helpful to know I am not alone in this journey.
My son has ANCA vasculitis. I am so sorry for what you have gone through. He only tells me part of the story. I am trying to understand when he decides to give up meds. He does try to live life to the fullest and I have to believe that is the best thing he can do. Enjoy what you can and do what you love for as long as you can.
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