Microscopic Polyangiitis: I was diagnosed with... - Vasculitis UK

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Microscopic Polyangiitis

Rachelle_Labelle profile image

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 profile image
Rachelle_Labelle
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10 Replies
AndrewT profile image
AndrewT

Dear Rachelle, alive and well,

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.

AndrewT

Rachelle_Labelle profile image
Rachelle_Labelle in reply to AndrewT

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.

michichgo profile image
michichgo

Ah, bless your heart. Wish we all had it so good.

Be well!

Rachelle_Labelle profile image
Rachelle_Labelle in reply to michichgo

Thank you. I hope my reply finds you well, if not now, then very soon.

Suzym2u profile image
Suzym2uModeratorVasculitis UK

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

thank you

Susan

Rachelle_Labelle profile image
Rachelle_Labelle in reply to Suzym2u

I did it. Thank you for the referral.

metalback profile image
metalback

Hi Rachelle

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.

Glad you've done so well

Rachelle_Labelle profile image
Rachelle_Labelle in reply to metalback

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

bagpipergmd profile image
bagpipergmd

Hi Rachelle

My daughter was diagnosed with MPA 3 years ago and has battled through all the traumas of this condition.

Her battles are not only physical but also mental leading to deep bouts of depression.

Where can I buy a copy of your book? I am sure that this book will help her enormously. I am always looking for anything to help her

Thanks

Gerry

Rachelle_Labelle profile image
Rachelle_Labelle in reply to bagpipergmd

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.

My book is online at rachellelabellesbooks.com

I will say a prayer for your daughter. Prayer did help me.

God Bless You,

Rachelle

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