Problem with voice

[Jane-s]

I wonder if anyone else has a problem with their voice, I was diagnosed with GCA a year ago and PMR 8 weeks ago and on Prednisolone 20mg and alendronic acid. My problem is I can’t sing (in fact I have given up choir) and I can’t talk for any length of time as my voice gets hoarse and it hurts my throat, I find I have to hold my neck which helps a bit. Has anyone else got this problem?

[SheffieldJane]

It is something that happens but as you are experiencing pain I would have it investigated. Pred itself can be very caustic to the oesophagus. I have had one severe spasm and a few lesser ones - very alarming. I only discovered that my moderate singing voice had become a croak when attempting to sing to my grandson.

[Jane-s in reply to SheffieldJane]

Thank you . It’s not so much pain but a dull ache. I was referred to ENT by my GP but was given short shrift as “this is a clinic for seriously ill patients”. So there you go!

[PMRpro Ambassador in reply to Jane-s]

Moderately ill people don't count until they are seriously ill then? So much for proactive/preventative medical care ...

[Blearyeyed in reply to PMRpro]

Unfortunately , that is what people are hearing all the time these days , even when you get there , rather than actually considering you properly and catching and treating the issue of giving advice early you get a few snotty words and get sent on your way .

Unless it's a quick pill fix or something to remove many people are being left hanging until it gets to the point that the pill or knife works , when in reality giving that preventative care may make the pill or knife unnecessary.

Sad , its not just down to money or time either but often ignorance and lack of consideration.

[PMRpro Ambassador in reply to Blearyeyed]

As my daughter well knows. In July she was told she needed BIG surgery - whole day of theatre to be booked (unheard of) and 3 surgeons to be involved. One aspect of it was a 10cm ovarian cyst - was 7.5cm before last xmas - which would be emergency surgery if it twisted in the meantime. Still waiting ...

[SheffieldJane in reply to Jane-s]

How do they know we aren’t? Is it because we look so well?

[PMRpro Ambassador]

I had it a long time ago - it was a part of the PMR in the first few years and also led to me having to stop singing. First breath control went to pot so volume control was dodgy too, then it felt as if I was singing through a frog and eventually I just couldn't guarantee what note would emerge! I had a permanent sore throat - asked the doctor repeatedly and was always told he couldn't see anything, But then, he didn't recognise PMR either.

It had improved until a couple of months ago when I had managed to get down to 10mg again - and then it reappeared. I am definitely in the middle of a flare if I drop the pred dose that far now I get the stiffness. I'd almost forgotten what that was like!

Discussions with a few top rheumies seem to confirm my suspicion I have Large Vessel Vasculitis (LVV) as I also have a couple of more GCA-ish things too. Sore thoat and a cough can be signs of GCA or of silent reflux - who knows.

[SheffieldJane in reply to PMRpro]

Was that diagnosed by a PET scan? I think Sarah might be looking for that in me.

[PMRpro Ambassador in reply to SheffieldJane]

No, that's the point. By the time I put 2+2+2 together it was years on. The local rheumies in the NE were useless. We didn't have proper rheumies here in northern Italy then, just the rehab people, and getting a PET-CT isn't easy even today.

[jinasc in reply to PMRpro]

We had some 'proper ones' 13years ago, you were just not in my Hospital area. We now have many more - we patients (which includes very much you)have then educated more.

GPs in NE and Cumbria hopefully within two years starting Jan 2020. 🤞🤞🤞🙏 will get a refresher and update on GCA & PMR.

We gobby patients done some good - yea yea, bragging again 😉😉

[PMRpro Ambassador in reply to jinasc]

Just edited the comment - I meant proper rheumies here in Italy. Now we have a world name in PMR/GCA

[jinasc in reply to PMRpro]

Oops forgive an ancient Brit pretty please.............

[PMRpro Ambassador in reply to jinasc]

Durham rheumies were a bit lacking though!!!!

[jinasc in reply to PMRpro]

Until we exported one from QE to DUH. Unfortunately she moved on two years later down South. It was a bit too cold for here up here. 🤔

[PMRpro Ambassador in reply to jinasc]

Or Dryburn was too much ...

[jinasc in reply to PMRpro]

🤔😊🤗🍸

[powerwalk]

Thats a pity you had to give up your choir! I know what you mean though. I could sing decent, but definitely not the same now, would feel that croakey thing cutting in. Wonder if its maybe part of the fatigue of this, or the pred. Obviously best to get it checked in case. And definitely my husband cant hear me when im talking, so it all seems to affect the voice in some way. Its like its too much energy to speak louder!!

[SheffieldJane in reply to powerwalk]

That all rings a bell for me. Do you have a tendency to choke? I do, even on my own spit and I can’t eat bacon for fear of choking.

[powerwalk in reply to SheffieldJane]

Oh i get a kind of catching, if you know what i mean. Like my throat wont clear! Proper little hothouse orchid i am now!!!!!!!!!! I used to be so resilient.

[PMRpro Ambassador in reply to SheffieldJane]

Yes - and the slightest crumb or vinegar in the throat brings on a sneezing fit!

[SheffieldJane in reply to PMRpro]

Me too and my achoo has lost the choo so I just do a blood curdling aaaa! That annoys everyone.

[stellafmdm in reply to SheffieldJane]

😆😆😆😆

[SheffieldJane]

I have a permanent sinus issue and a post nasal drip. Shoot us now!

[Jane-s]

Thank you for all your comments and support. Yet again ,it’s good to know I’m not alone ; this time in being unable to sing .People don’t seem to notice that my voice gets husky and I cant talk for long.

[Blearyeyed in reply to Jane-s]

Did the Doctor at ENT at least give you any advice on how to strengthen your throat and neck area or on exercising your voice and treating it to improve the symptoms?

It may be worth asking your GP to send you to the physio with knowledge of throat exercises and the Voice / Larynx Coach . My Mum goes to one after years of medication affecting her voice , she used to joke to cheer herself up that she could take over voicing for ' Larry the Lamb' but in reality it did get her very low. It was because of the reduction of collagen in the larynx and reduced muscle strength from different drugs and connective tissue problems over the years.

She also gargles with warm green tea each day with local or manuka honey and does voice and throat strengthening exercises .

She also steers clear of anything that irritates her throat like certain mouthwashes and spicy food and coffee.

She can't sing for a full session or full concert but does now manage to perform a few songs or pieces from a performance , mouthing the rest until she is back in shape. Just still doing a little and enjoying the social aspect of singing was a huge boost to her Positivity while ill.

My Cousin also had nodes taken from the throat eight years ago and didn't just get her speaking voice back but is back singing again too , so don't give up , there is hope xxx

[Jane-s in reply to Blearyeyed]

Thanks, thats so helpful

Jane-s

[Rimmy]

Yes I can relate - though never a singer - I could play the flute but never quite sing in tune even as a child. I am now breathy with either the PMR or GCA ( 3 yrs duration) being the probable 'cause' as nothing else definitive is. As a result my singing in the shower is even worse and I sound like a croaky frog a lot of the time - at best I am enunciating at least an octave lower. Could be 'ageing' I guess as well - people's voices do alter over time and things like our swallowing reflexes are hardly likely (almost everything else) to 'improve'. Still if concerned I would push for a proper exam.

[Jane-s]

I sound like a croaky frog too. Keep trying to sing in the shower but not for long ; throat hurts. I think it’s the GCA not the Steroids as it’s one of the things that happened first. It’s all a bit of a mystery ,isn’t it?

[stellafmdm]

I used to have a good singing voice, nowadays I can only croak!!! (I do have COPD though)

[Mrs-CJ]

Prednisone can cause acid reflex or silent acid reflex.....and symptoms of those include hoarse voice.

It could also be that the pred increased your stomach acid a bit and added to the other acidic foods you eat you got pushed over your “threshold”. You could try taking the most acidic foods out of your diet to see if that helps.....I think u might know in just a few days.

[jinasc]

PMR = oxygen supply to muscles is impaired. We do have lots of those muscles everywhere.

I have noticed that not all muscles seem to be affected.....................so different people etc....................