Hearing loss?

[LH44]

Anyone else have hearing loss? If so, what type? I've had 3.5yrs of eye problems (anyone have those?) that have kept me housebound, now it's like its moved to my ears which has prompted my eye cons to tell me I have Wegener's. I'm not convinced although he told me to look it up then I saw it was a vasculitis which ironically, several family members have different versions of.

[Hidden]

Hi,

Have you been referred to a Consultant who has experience in diagnosing and treating Vasculitis? What treatment have you been offered?

GPA ( Wegners ) can cause both ear and eye problems.

[LH44 in reply to Hidden]

Thanks for replying... Yes, thats what my eye cons said, I have sensorineural hearing loss, both ears. I've been on Hydroxychloroquine for a couple of years from my rheumatologist due to several signs/symptoms. I asked whether the hearing loss (which has only just come to light) was a side effect of the medication as I noticed it so my rheum has temporarily taken me off it whilst my ears are investigated. MRI w/o contrast is ok. I've left rheum a message about some symptoms returning but no one has got back to me which leaves me rather alone, until I found this group!

[Hidden in reply to LH44]

Hydroxychloroquine isn't an effective treatment for Vasculitis. If you have eye involvement then you need prompt, effective treatment to prevent permanent damage to your sight.

As Vasculitis is a rare, complex disease you really need to see a Consultant with good experience in diagnosing and treating it.

VUK have a helpline, feel free to phone or e mail either John or myself if you would like to talk things over.

vasculitis.org.uk/helpline

Best wishes

Lynn

[LH44 in reply to Hidden]

TIhanks Lynn, I did wonder that... I'm also on several eye ointments/drops Inc. steroid & immunosuppressive so eyes are much more under control. I sent my eye cons ltr to rheum & ENT & no one has acted on it so I'm concerned about that & now being on no tablets. I don't want to lose my hearing completely ☺

[Hidden in reply to LH44]

The fact that no one has acted on the letter is concerning and may point to a lack of knowledge about Vasculitis.

Have you thought about a second opinion from someone more experienced? Can your eye consultant get in touch with your Rheumy as eye drops alone won't control Vasculitis affecting the eyes.

[LH44]

Excellent! I've got ENT soon, doubt they'll do anything probably lack of knowledge as you've suggested. Re; eyes, that might explain why I've had continual problems until now it's my ears. Do you know how to prevent further ear deafness? I'm only in my 30s! I don't know where else to go other than PALS at the hospital.

[Hidden in reply to LH44]

If you let me know where in the UK you are I can suggest an appropriately experienced Consultant. You can ask your GP for a referral.

[LH44 in reply to Hidden]

Thanks, can I message you direct on here? New to this.

[Hidden in reply to LH44]

Yes you can or e mail me on [e-mail]

[AmyS1]

Hello you definitely need to see someone who specialises in vasculitis. There are other forms not just Wegners or GPA which can affect your eyes and ears eg relapsing polychondritis which is particularly difficult to treat. Damage to your eyes and ears will only be reversible with prompt treatment from a knowledgeable specialists. Time is of the essence if you are loosing your hearing. You need to be seen asap. Even your GP may start you on high dose steroids or liaise with a consultant if you mention that you are aware that a delay in treating could lead to needless permanent hearing loss. I hope this is helpful.

[LH44 in reply to AmyS1]

The GP was told about WG first & they've done nothing with it. PALS said they spoke to ENT & will be able to deal with it next week, we'll see!! My eyes are so sore again, feels like they have acid in them. I've left messages with my rheum team & no one's replied either, I really don't get it. I looked up RP, have 99% of that plus other issues, not heard of it before so thanks for that. This year I've had sternum pain which is worsening, that's a new one 🙂

[AmyS1 in reply to LH44]

Sternum pain is part of relapsing polychondritis. If your eyes are bad I would go to a specialist eye hospital with an A and E and get advice. You can just turn up!I would make an urgent appointment today for your GP if your hearing is left it may not recover.Your GP can speak to ENT consultant today some appropriate treatment might save your hearing.

[LH44 in reply to AmyS1]

Really? Now that is s surprise. Not to worry, I'm used to unbearable eye pains for a few years. If the inflammation appears I'll be shouting! I expected it coming off rheum medication. My eye cons is the most interested one. I noticed my hearing change in Sep/Oct although they think I've had the loss some time. Does that mean it's too late anyway? Thanks 🙂

[Hidden]

Please continue to insist on proper treatment. I have had very similar symptoms and a positive cANCA result in my blood and was diagnosed with Wegener/vasculitis immediately, plus differential diagnosis of Cogan's syndrome. Treatment with cortisone, methotrexate and rituximab has saved my hearing and my eyes have recovered, too.

Read here: ncbi.nlm.nih.gov/pmc/articl...

[LH44 in reply to Hidden]

Thanks, just struggling to get anywhere atm & I've been off my medication almost 2 mths, being ignored!

[Hidden in reply to LH44]

Go to A&E, say you have sudden hearing loss ( which is a red flag symptom ) and refuse to leave until they have looked at your eyes as well and provided answers.

Get them to document your concerns and their answers. Say things like

" can you give me assurance that I won't have permanent end organ damage / hearing loss if nothing is done about my symptoms ".

It's time to be really proactive, you shouldn't have to but what's the alternative?

[LH44 in reply to Hidden]

Thanks... Don't know if you can see the post I just replied to above but they think I've had the loss a while.

On Monday that's exactly what I'll tell ENT.