Has anyone noticed Hearing Loss

[Bananananna]

Hi. I've been on this PMR/GCA journey for a month now. I hadn't been well since before Christmas but put it down to the chronic fatigue I also suffer from. It wasn't until I couldn't sleep or move or get out of bed for the excruciating pain that I thought this must be something else 😩I'm still trying to get to terms with it all. One question. Do any of you suffer from hearing loss and if yes, have you noticed a decrease in your hearing? Went to see my audiologist who confirmed I'd lost more hearing and she's been trying to adjust my hearing aids but unfortunately without much success. I am profoundly hard of hearing and was put forward for a cochlear implant which I now find out I can't have due to being on pred. Is there anyone else in this situation.

[Almosrthere72]

Hi,my mum had GCA/PMR and yes the latter few months she had hearing loss.At first it would come and go but then it gradually became worse.Some days it was worse than others depending on her she was feeling.She also had slight cranial strokes that would last minutes if that and doctors still wanted her to come down the steroids..GCA/pmr eventually killed her she died from heart failure .

[Bananananna in reply to Almosrthere72]

Oh, I'm so sorry you lost your mum. Devastating for you. I am still at the stage of discovering how serious this disease is and I must admit I'm quite frightened. I've had many things wrong with me over the years, some life threatening, but have always managed somehow to stay positive. Must admit I'm struggling with this one.

[PMRpro Ambassador]

Yes - hearing loss appears to be relatively common in GCA and there is currently a study ongoing in the UK to establish HOW often it happens. If you are in the UK, please do participate as we still need GCA and GCA+PMR patients to be able to complete it.

healthunlocked.com/pmrgcauk....

It is probably due to impaired blood flow to the ears - a similar effect on the ears to on the optic nerve in loss of vision.

[Bananananna in reply to PMRpro]

Thanks for that. I've just sent an email to Susan Pugmire to volunteers for the research

[PMRpro Ambassador in reply to Bananananna]

Wonderful - thank you!

[Pamela60]

GCA for three years and recently diagnosed PMR. I’m now the proud wearer of two hearing aids.

[jinasc in reply to Pamela60]

Pamela if in the UK, will you please follow the link PMRpro provided which I have copied here:

healthunlocked.com/pmrgcauk....

[Bananananna]

That's rotten luck. Perhaps you should also think about doing the research/study. The more information there is about hearing loss and possible causes the better.

[Pamela60 in reply to Bananananna]

Hi. I’ve already done the research/study. That’s my local hospital as well.

[Hidden]

Afraid my hearing has done the opposite!! Can't cope with music,radios, traffic noise and people banging things!!

[PMRpro Ambassador in reply to Hidden]

Still a hearing problem! Is it GCA?

[Hidden in reply to PMRpro]

I have gor PMR and GCA so assumed it was as had hearing aids before and can't use them now!

[PMRpro Ambassador in reply to Hidden]

Are you in the UK? Have you joined in the study?

[Hidden in reply to PMRpro]

Yes I am. Have written down the details. Will email Susan. Thank you for reminding me!! Brain fog!

[PMRpro Ambassador in reply to Hidden]

Great!!!! Thanks

[Angiejnz]

I'm 53 and wear hearing aids. My quality of hearing changes massively during the day so I'm forever fiddling with settings. It's a real nuisance except when I'm being asked to do something I'd rather not or while listening to boring people. The tinnitus is more present than before, mostly phantom cats miows which catches me out when I go to open the door for the 3 rascals and they're not there. The joys of pmr but at least our disease eventually burns out, not like the other autoimmune problems so I'm grateful.

[Bananananna in reply to Angiejnz]

Phantom cat meows 🙀 Mine prodiment ones are car horns and the doorbell! I'm forever going to the door to find nobody is there. Yes, it's great that the PMR eventually burns itself out but unfortunately it doesn't appear that that's the case with the GCA which I've also got. Aargh! I've found a great positive to losing hearing though - cheap theatre tickets. If you like the theatre then either send off for a form or take your brown batterie book to the ticket office and they will tell what discount and access you can get. My 'career' (husband) often accompanies me free 😄

[PMRpro Ambassador in reply to Bananananna]

GCA is more likely to burn out and sooner than most PMR. It still often takes 5 years of so though.