I've lost my voice!: Despite now being in... - Vasculitis UK

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I've lost my voice!

Wrigglymonkey profile image
8 Replies

Despite now being in remission (patient at Addenbrookes) and coming up soon for my first maintenance dose of Rituximab, I have lost my voice. Apparently it could be Aphasia (I read it on the internet so it must be true!). Has anyone else had this?

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Wrigglymonkey profile image
Wrigglymonkey
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8 Replies
piglette profile image
piglette

One of the staff at the school where I am a governor lost her voice and had Botox to sort it out. I am not sure what she actually had.

traxter profile image
traxter

what form of vasculitis do you have? I have wegener's and have had ongoing voice problems since pre-diagnosis (in fact, that was the reason I was originally referred to Adds). For me, it is an indication of disease or infection or tiredness etc etc! It's never been suggested it's a separate ailment, just seems to be part of how my body reacts. Hope your voice comes back soon, but don't despair if it takes a while. And don't whisper, apparently that's a bad thing to do!

Wrigglymonkey profile image
Wrigglymonkey in reply totraxter

Hi Traxter

Which sort of vasculitis? Simply ANCA vasculitis is all I know! I will quiz the next consulttant I see. The voice loss is only since I was officially in remission. I am Keith should we happen to be in the same clinic. (My next visits are 7 July Rituxmab and 17 July Dr Wilcox.)

traxter profile image
traxter in reply toWrigglymonkey

Keith, hope all goes well. I'm Tracey -think we will miss this time as I'm there early August. am likely to be the one who can't talk very loudly!

Wrigglymonkey profile image
Wrigglymonkey in reply totraxter

It turned out that the immuno-suppressants had done their job only too well and now I have PML with J-C Virus!...and a few new toys to play with from the OT.

michichgo profile image
michichgo

Hi Wriggly.

I really like your name!

As to your lost voice, I can relate. I had to look up the definition of aphasia--that's not my problem, I'm relieved to say!

I suffered laryngitis for 3 weeks. For three full days I had no voice; the remainder of the time I would either squeak or project the crackling voice of a teen boy approaching puberty.

My recent bout of laryngitis was caused by a head/chest cold and thankfully it's run its course. Just in time for my maintenance Rituximab infusions. Darn ANCA! If it's not one thing, it's another.

Be well!

Mich

Mpa, July 2013

Wrigglymonkey profile image
Wrigglymonkey

Wrigglymonkey is actually the nickname for a part of my vintage car, designed to prevent getting two gears at once and based on the device to allow first world war pilots to fire a machine gun through the propellor without shooting it off! It is good to have a hobby to take the mind off vasculitis!

Honey46311 profile image
Honey46311

Hi,

I actually started losing my voice again as of today. I thought it was Post nasal drip at first. But I'm pretty sure it's GERD that's causing laryngitis. I took a Pepcid earlier today and it seemed to help. I finished Cytoxan IV treatment in April. I just started on Methotrexate. The nurse I work with stated that GERD can be a side effect of the meds. So just another possibility.....

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