p Ancaster vasculitis lung involvment - Vasculitis UK

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p Ancaster vasculitis lung involvment

Manock profile image
11 Replies

curious- I've been in remission around 1-1/2 yrs.im still very tired and have aches and pains. My blood work is good.sorry to ask I'm starting to get frustrated.

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Manock profile image
Manock
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11 Replies

Fibromyalgia, ask your Rhumatology consultant 👍🏼

Manock profile image
Manock in reply to

One dr said I have that and another said no. It's the exhaustion that bothers me

zoe69 profile image
zoe69AdministratorVolunteerVasculitis UK

Ask your doctor to refer you to the pain clinic so they can investigate. I have secondary fibromyalgia and central sensitisation syndrome.

Manock profile image
Manock in reply tozoe69

Weird thing is ever since I got diagnosed with p Anca I've noticed hypersensitivity to smells. Perfumes give me a heache now. Relation to vasculitis idk

zoe69 profile image
zoe69AdministratorVolunteerVasculitis UK in reply toManock

Do you have sinuses involvement? I am sensitive to some smells, especially sweet and heavy ones. Most of it is because of the central sensitisation syndrome and fibro, but I was sensitive to smells from when I was diagnosed with GPA.

Manock profile image
Manock in reply tozoe69

Honestly idk. As far as I know it's only lung involvement. These symptoms described came on after vasculitis weather it's related idk. I also go glaucoma again after vasculitis but no answer as to a relation

zoe69 profile image
zoe69AdministratorVolunteerVasculitis UK in reply toManock

Have you been on steroids for prolonged time? It could be steroid induced glaucoma. Not vasculitis related, but treatment related.

Manock profile image
Manock in reply tozoe69

Very interesting never thought of that. Yeah I was on 80mg a day for awhile then tapered over a yr

michichgo profile image
michichgo

Hi Manock,I was diagnosed with MPA (an ANCA variety) in 2013, with kidney involvement. I achieved remission in a year's time but I've never NOT been on medication of some sort, in order to treat ongoing systemic pain and fatigue.

Physicians and other vasci patients mention fibromyalgia and/or other diagnoses. As for me, I think vasculitis caused much more damage than can be seen by present day medical testing. Future advancements are sure to come.

In the meantime, pace yourself and find a good medical team with whom you have good rapport. There haven't been been a lot of responses to your post but please know you are not alone. Far from it, thousands of us share similar experiences and ailments.

We're a rag-tag bunch of health misfits but certainly understanding and supportive!

Be well, friend .

Michele

Manock profile image
Manock in reply tomichichgo

So the exhaustion and aches and pains are "normal" being in remission and good blood work for us? Lol

Manock profile image
Manock

Thank you everybody

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