Hearing Loss

[TrumpetPlayer]

I was diagnosed begining of May for GCA and put on 30mg of Steroids. Been told the inflammation has gone right down and to taper fortnightly down to 25mg and then 20mg etc I am having problems with hearing sounds like I am under water all the time and my voice is Hoarse sometimes I can only whisper. So frustrating. Has anyone else had this problem and will my hearing and speech go back to normal

[SnazzyD]

When did this start? Have you had anyone look into your ear with a scope to rule out wax, inflammation or debris or fluid on the other side of the eardrum? Any upper airway congestion?

If there is no upper respiratory issues or ear blockage, my worry is the hoarseness as well as the ear problem indicates GCA is flaring. If it was May this year (10w ago?) you were diagnosed, then 20mg is likely way too low to be on at this point. 30mg is also below the lowest usual starting Pred dose for GCA which is 40mg. I was started on 60mg and then kept on 40mg for 6 weeks before a drop to 35mg. Have you reported this to a doctor?

[TrumpetPlayer in reply to SnazzyD]

Yes had my ears checked for wax which is clear, the deafness started about the beginning of June, Trying to get an appointment for the doctors, the hospital are keeping a check on the inflammation by me having a blood test every 6 weeks. I am just worried if this hearing problem is going to be permanent

[Bluey-1 in reply to TrumpetPlayer]

I had hoarseness during the very early days of GCA. It cleared. I started on 60 mg Prednisolone. You do seem to have started on a low dose for GCA. Have the headaches gone? Any pain at all? Do you know your CRP/ESR Numbers so you can get to know how your body is responding to the steroid treatment? If the deafness has continued and your ears are free of wax I think you need to follow up.

[SnazzyD in reply to TrumpetPlayer]

Not necessarily permanent but nobody can say for sure. I too had hoarseness and hearing problems with early GCA. My inflammation levels never went above the normal range ever, plus they can lag behind symptoms.

[Bluey-1 in reply to SnazzyD]

Interesting re inflammation markers. Mine quickly reduced following steroid treatment on the higher doses. In my case they seem to be a good guide to my state of being and have been pretty stable at a low level (fingers well crossed!) since last October. Just goes to show how we are all so different in response to this challenging illness. Reading your own body isn’t easy as sometimes you really have no idea why you have intense fatigue, or as I sometimes call it, a wipe out day.

[PMRpro Ambassador]

For what it is worth - I agree with everything Snazzy has said. I think 30mg is too low for GCA and there is almost certainly something left over.

[Viveka]

Do you actually play the trumpet? If so presumably you have paused it for now?

[TrumpetPlayer]

I having problems playing again because of my hearing, so can;t get back to my bands yet.

[PMR2011]

My primary symptom was hoarseness. I also would get earaches when flaring. Agree with others, sounds like the GCA is not under control. Just as with sight, it needs focused urgent treatment to prevent further loss and to regain hearing if possible. Wish you best!