MPA in remission - what are these symptoms?

[JaneLE]

Hi,

Could do with a little advise as not sure if I'm panicking for no reason.

I have MPA and am on azathioprine and prednisolone, and am officially in remission after a years treatment.

But, I have weird speckles at the back of my throat, various throat infections, little spots around the base of my nose and under my eyes. Then yesterday I had major visual disturbance that meant I lost some vision for half hour, followed by extreme exhaustion and feeling like my head would explode.

Anybody had similar?

[Ayla Volunteer]

Not exactly, Jane, though I once had a strange vision experience about 2 years after diagnosis when everything went out of focus and I couldn't see properly. This lasted about half an hour and was pretty scary! I didn't have the exploding head feeling, though I do remember feeling mega tired for the rest of the day. I have MPA too.

The other symptoms sound like an infection, or more than one, to me but I am no expert! Can you ring your consultant tomorrow and see what he thinks? Certainly you need to know what is going on.

Ayla

[JaneLE Administrator]

Thank Ayla, I never can judge when call the consultant ????or when I need to just ride it out.

[PatriciaAnn]

Hi Jane

Whether to call or whether to ride it out. Is it the vasculitis or is it one of those things? I think we are all in the same boat. I've phoned and next day it has gone away. I've not phoned and a few days later finished up in hospital.

Looks as if there's a lot going on. I'd say ring.

PatriciaAnn

[hamble99b Volunteer in reply to PatriciaAnn]

I'd ring too.

I lost my vision, had to get the bus home and asked the driver to tell me when we reached my stop! bless him, he walked me across the road too

I climbed onto my bed still in my coat and slept.

when I told my gp he said next time take a taxi here so we can see you as is.

let us know what happens,

sandra.

[LynneJ Vasculitis UK Volunteer]

Hi Jane

I have MPA in remmission also. I have visual disturbances which start with a blind spot and this goes into zig zag bright light lines which spread out and eventually disappear. I have always thought they may be similar to a migraine without the headache. They last for about 1/2 hour and do make me feel tired. They used to be scary but don't bother me now. I feel they come from the big muscle at the base of my neck being extra tight as if I press on it I can sometimes stop it starting. I don't know if this is similar to yours.

My doctor says I am entitled to worry and it is always best to get checked out.

My consultant also says to get antibiotics sooner rather than later.

So if you have been OK up to now I would get a check up.

Good luck.

Let us know how you get on.

[hamble99b Volunteer in reply to LynneJ]

I was told its "visual migraine"

[hamble99b Volunteer in reply to hamble99b]

oops! meant to add -

when it's the wavy, zig-zags, lights, but no headache.

sandra.

[JaneLE Administrator]

Thank you. Will do some phoning tomorrow. Feel very weak and tired today.

[LynneJ Vasculitis UK Volunteer]

Thanks Sandra.

I haven't come across anyone else with this and doctors sort of dismiss it.

I had it long before Vasculitis though so I don't think it is related to that. It has not been a big problem to me so I never bothered about it.

Lynne

[AndrewT]

Dear Jane,

I'm not so sure that you are still in remission! Perhaps I'm wrong; hope that I am- worth checking though. My advice to you, given to me by a consultant many years ago, is report ANY strange/unusual symptoms no mater how apparently trivial. Not saying that your symptoms are trivial, of cause, just 'passing on' his advice. My vasculitis often appears as a 'red eye' for no apparent reason, something that I am acutely aware of.

Hope this is of use to you. Please do let me (us) know how you get on, will you?

AndrewT

[JaneLE Administrator]

Thank you all. GP seen today, he thinks the visual is a migraine. And I also have an infection of the nasal passage- so have some cream. Fingers crossed its nothing more.

Your support meant a lot.