I was diagnosed with MPA in 2007. You have to experience its symptoms to understand just how painful they are. My kidneys took a hit, but the burning, jabbing pain when my inflamed blood vessels failed to deliver enough blood to my peripheral nerves almost drove me out of my mind. I was treated with Cyclophosphamide and Prednisone. In the Spring of 2008, I was declared in remission and gradually recovered. I am still in remission. I have written a book about MPA and my observations. It is available on rachellelabellesbooks.com
I have been living proof that we can recover from a rare life threatening illness to become a functional and hard working member of the workforce. To other MPA patients: Hang in there, you will be your old self again.
Rachelle
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Rachelle_Labelle
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You seem, 'on the mend, Lewis's case is being reviewed (we all signed a petition, asking for a review of his medication refusal). A friend, of mine, tells me that her condition is 'stable' though her ''tummy'', which has been 'bad' for ages, is still causing problems.
Anyway glad to hear of your apparent 'cure/remission'. I know that we all send you our best wishes.
Congratulations for signing Lewis' petition. It yielded positive results. Not being able to get treatment or medication that we know would be helpful and in some cases life saving is frustrating and discouraging. Overseas I had access to medications and treatment not allowed in my country. I was fortunate but a bit weary upon my return, given the risk of relapsing.
If you send a copy of your book to John Mills chairman of Vasculitis UK, VUK will review your book for the next newsletter. John's email is john.mills@vasculitis.org.uk
i was also diagnosed in 2008 with MPA with kidney damage. Sounds like you've done better than me to have recovered. I still get very tired and ache a lot. Your book sounds interesting. Maybe something for doctors who don't believe their patients.
Don't get me wrong. It was a slow and at times frustrating recovery, as recorded in the book I wrote recently, but I did it and I am a whimp. A highly qualified nephrologist, good nutrition, lots of rest and lots of prayer and even more patience are what I tried. I recovered at about 90% of my bounce and energy. Hang in there; it does get better. Rachelle
Gerry, I replied some time ago, but it appears as though it was not sent to you. The pain and weakness that MPA generates is demolishing and depressing. You don't say if your daughter is a child, teenager or adult. Either way, I too was depressive after constant pain over a prolonged period of time. MPA is an illness that does not show, so many people don't believe or realize that the patients feels quite sick at times. Trust me, she will get better, especially if she becomes determined to take control and not let the illness control her.
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