Hearing & Jaw still affected after full sight loss

[Jeromekjerome]

My mum lost all vision due to GCA last week, is on 60mg oral Pred. Still has jaw pain and is experiencing slight hearing loss.

my original post: healthunlocked.com/pmrgcauk...

I have 3 questions if anyone can help:

1- Hearing has been much worse than usual - can anybody tell me if this is to do with GCA and if the steroids will reverse it or is it permanent like the vision loss? Also can patients with GCA develop complete hearing loss?

2- We were told there could be small vessels deep in her brain that might be damaged too that we don't know about -that might cause a stroke - do the steroids still help to prevent this or is it like a time bomb? Her new ultrasound temple and under arm artery scan, MRI and MRA scans were negative.

3- Her jaw still hurts after about 4 chews on food - is this permanent like the eyes - or can this damage be reversed with the steroids?

Thank you - we have an appointment with the GP on Thursday - I want them to bring forward the booked follow-up with the rheumatologist which is scheduled for 21st Nov to find out about this. Do I need an urgent appointment? If so how?

[Jampad]

I had jaw pain and could only manage three chews of anything before the pain became excruciating. I was taking 60 mg prednisolone but it took about a full month before the jaw pain totally subsided. It still aches sometimes now.

[Jeromekjerome in reply to Jampad]

thank you for that information - it sounds terrible but glad to hear it improves

[Jampad]

Forgot to say - I used to eat cold food, so I could eat some, then wait a while before trying again.

[DorsetLady PMRGCAuk volunteer]

Hi again

PMRpro has answered on original post - as have I regarding hearing and jaw issues.

As stated she should be referred to stroke unit. And yes you need to get her next appointment with Rheumy brought forward - is your GP someone who can push for that.

If does take time for everything to settle sometimes - but from personal experience I would question whether 60mg is really enough at the moment.

Can you speak to GP tomorrow on phone to express your concern - and maybe get an emergency appointment with him - that’s a start.

[Jeromekjerome]

I will, thank you.

[PMRpro Ambassador]

For completeness - my response from the other thread:

1) Yes, hearing problems are part of GCA - involvement of the 8th cranial nerve to be exact - and the NE region part of this charity was involved in funding the pilot work which was the basis for an NHS-funded study:

ncbi.nlm.nih.gov/pubmed/314...

2) Not sure about that - there is a risk of stroke with GCA but I would have thought it was greater if untreated so provided the GCA is now under control the risk is far less. She should be referred to the stroke clinic I would have thought - they are the experts. But the rheumy is at least continuing with treatment.

3) I would be inclined to wonder if she still needs some more pred but it is also possible something else is causing it. Obviously the rheumy still thinks 60mg is enough... But the ongoing ear and jaw problems suggest it may not be.

I'm speechless. I had heard bad reports of the NW area but nothing to match this.

I am inclined to think that they KNOW they messed up and are being defensive but it is totally unacceptable - as is the appalling level of communication skills exhibited by the ophthalmogist. Funny how "it's guidelines" is always used to fit what they want - claiming they can't do something because of guidelines or not doing something because "guidelines are only guidelines, only advisory".

Will you have to see the eye person again? If so, I would ask for someone with whom you can build a better relationship. I'm so sorry, you both deserve better than this - the NHS is stretched - that is no excuse for not knowing the right way to treat a not uncommon illness.

[Yellowbluebell]

Is the gp the same one that failed to diagnose gca or a different one? If its the former i would refuse to see them again until such time as you know the final outcome of this whole unmitigated failure on their part and the hospital to treat your mum promptly and properly. If you do need to see this particular doctor i would suggest you dont discuss his/her failure to diagnose and make a record of everything said. Do not get drawn into a conversation about past treatment or lack of!! Taking notes will probably not go down well but you need to make sure you have records for the future and you are legally allowed to make your own records of your conversation. If you intend to make a recording of the appt you will have to make sure the gp gives his/her consent. Good luckx

[Jeromekjerome]

thanks - this GP is the good one - the one who finally sent her to A&E at Chester - even though they failed her once she got there

[Yellowbluebell in reply to Jeromekjerome]

Thats ok then. Try and take notes anyway just for your own peace of mind mind.x

[Jeromekjerome]

I'm afraid I'm going into a panic about this - has there ever been a case of GCA where the patient ends up with complete vision and hearing loss?

[PMRpro Ambassador in reply to Jeromekjerome]

Not that we know of, no. But then, few patients with total visual loss come to the forum. The association with hearing loss has only been confirmed very recently so whether there are reports in the literature is another question.

However, your mother is now on a decent dose of pred for everything except visual symptoms. Some of the recovery does take a bit more than a week,

[Jeromekjerome in reply to PMRpro]

right, I understand. Do you think I should suggest to the rheumatologist that the four week high dose should continue further than four weeks?

[Yellowbluebell in reply to Jeromekjerome]

I am not an expert on gca like pmrpro and Dorsetlady but if it was my mum i would ask for longer just "because"!!

[PMRpro Ambassador in reply to Jeromekjerome]

You could try. If it were me I would want it until I was sure the hearing loss wasn't progressing - and I would also get a hearing test done asap to be able to quantify it (and not by the local NHS, just in case). There are reports of sensineural hearing loss in GCA, what is also called sudden hearing loss, and the normal treatment is high dose pred. It is often total in the affected ear - but most often unilateral - and immediate treatment with high dose steroids does often result in recovery.

But I would also take all this info to the good GP - and keep records of everything,

[Blearyeyed in reply to PMRpro]

Totally agree on this Pro , better to be safe than sorry at this point.

[Devoid in reply to Jeromekjerome]

Just to say from my own experience of gca , the first days following diagnosis is very disorienting in many ways, I have been fortunate not to lose sight but literally in the early days kept awake to check I could see. I think your mum will be in shock by it all and emotionally you are all over the place, she has got you and that will be what gets her through. My daughter and I have cried and laughed together over the last few months and I know I couldn’t get through all this without the support of my loved ones

[DorsetLady PMRGCAuk volunteer in reply to Jeromekjerome]

As PMRPro says - there have been a few family members who have posed about a loved one’s sight-loss Complete deafness certainly has not been covered on here as far as I know, but for sure there are patients with partial loss.

As for staying on 60mg longer - this was my experience 80mg for first 2 weeks, then about 8 weeks at 60mg.

[Jeromekjerome in reply to DorsetLady]

Thank you - that is really useful information

[gifford7]

It's critical to know what her blood inflammatory numbers are, ESR & especially CRP.

CRP should be less than 8mg/L. In my case, when diagnosed with partial vision loss 1 eye, was put on 80mg pred. CRP in the high 80's only came down 10% after 2 weeks. After 20 days had a GCA induced stroke. Was put on a pulse dose of methylprednisolone: 1,000 mg/d for 3 days, by infusion. This finally brought CRP into the normal range below 8mg/L.

Generally ESR should be below 20-30 mm/hr.

[PMRpro Ambassador in reply to gifford7]

Please gifford - that is NOT entirely true. Up to 1 in 5 patients with GCA do NOT have inflammatory markers that are out of the normal range. Ever. That is one of the difficulties with getting a diagnosis in these patients.

[gifford7 in reply to PMRpro]

PMRpro I only stated that if CRP is very high, as it was in my case, and vision loss, its critical to consider bringing it down quickly with pulse steroid therapy to prevent further vision loss or stroke. 3 MDs told me if i had originally chosen pulse therapy

[1,000 mg/d methylprednisolonex3d] when initially diagnosed i would probably have avoided the GCA stroke 20 days later. see:

"Apr 5, 2010 - Recommended starting dosages of glucocorticosteroids are: Uncomplicated GCA (no jaw claudication or visual disturbance): 40–60 mg prednisolone daily. Evolving visual loss or amaurosis fugax (complicated GCA): 500 mg to 1 g of i.v. methylprednisolone for 3 days before oral glucocorticosteroids." Dasgupta

academic.oup.com/rheumatolo...

[PMRpro Ambassador in reply to gifford7]

You said "It's critical to know what her blood inflammatory numbers are, ESR & especially CRP."

That is what I was referring to. I agree that the doctors were wrong in this case. But the ESR and CRP levels wouldn't have made any difference to their decision. They persisted with it even after visual loss. But this doesn't help at this stage.

[YuliK]

So so sorry to read your dear mother has lost her sight. I really hope it will return and she will start to feel better. How hard it must be for you too, not an easy job taking care of the elderly.

My very best wishes for a swift recovery.

YuliK 🙏🌹🌹🌹🌹🌹