Hearing loss update

[lisa___s]

So I had bloods done this morning for all my makers but wasn’t expecting to hear from my gp until Thursday when she got the results back.

But she rang me this afternoon to tell me that she’d had an immediate response from her email to my rheumatologist.

He’s told her to put me on steroids immediately!!

I’ve not taken steroids before so I don’t know what to expect & he is starting me on 12 tablets a day for the next 4 weeks then I’m to reduce by 5% each week.

Fingers crossed this will stop anymore hearing loss and recover the loss I’ve had.

[suzannah16]

good luck, I saw your first post about this and hope the steroids work for you

[lisa___s in reply to suzannah16]

Thank you 😊

[overnighthearingloss]

What dose are each of the steroid tablets?

I am rooting for you. Enormously glad your consultant picked up the urgency that your gp missed, but think you should also have been referred to audiology.

I hope in your case it is not too late, but I do know they recommend action within 10 days.

[lisa___s in reply to overnighthearingloss]

Overnighthearingloss thank you so much for your advice and support over the last few days. I really appreciate because I was so scared.

I feel nervous but relieved at the same time now. I’m glad my consultant was on the ball and pleased I’ll be on the right path to treatment. But as to recovering the hearing it’s just a waiting game.

I don’t know till tomorrow morning what the dosage is as that’s when I get my tablets.

I live in the middle of nowhere and my other half is on nights so he’s collecting them from the pharmacy on him way home in the morning.

But my Gp seems really shocked at the dosage, she said it was an extremely high dose.

I asked her how my body might react and she said people can tend to be quite hyper on them and that’s it really.

[overnighthearingloss in reply to lisa___s]

You may become more reactive than normal. Whilst you are on a high dose it is common to put on weight and perhaps become moon faced.

I think I was on 60mg but it's possible that they may follow different guidelines these days.

You just have to go with it though unless they suggest anything alternative from newer studies.

I really hope it works for you. Try to eat as well as possible over the next few weeks to enhance any chance of recovery.

You will get through it either way, but give it your best shot.

[lisa___s in reply to overnighthearingloss]

Thank you

[honeybug]

lisa__s my prayers were answered PTL. To research your steroid meds go to

mayoclinic.org

The Mayo Clinic is world renowned for excellence in diagnostics and care.

Soo happy for you Lisa.

Hang in there sweetie. Take care dear.

EJ 😊🌿🌸🦋🙏🤗💗😘😇🕊

[lisa___s in reply to honeybug]

Thank you x

[honeybug in reply to lisa___s]

Welcome sweetie xx

[lisa___s]

I’m also being started on duloxetine this week as I had a bad reaction to hydroxychloroquine.

But some of my friends in another support group have said that this is more of a pain blocker and doesn’t do the same job as hydroxychloroquine.

They’ve told me I need to go back to my doctor.

Could any of you advise as I’m clueless as what to do.

Either way I’m grateful to be going back on different medication as I’ve been for a few months without and suffered some bad flares.

I’m currently curled up on the sofa as I have been all day knowing a really bad flare was starting.

I think maybe the stress of loosing my hearing has bought on the flare. My body really hurts ☹️

[overnighthearingloss]

The steroids will help with a flare.

It might be worth dosing with vitamin c and not having too many sweet things as sweet things reduce the good effects of vitamin c. Easy to say but try not to stress as it won't help at all. I know they have told you things may get worse, but they don't know that, they just have to address the potential of it.

I have found out over the years that these sorts of things seem more likely to strike if you are run down. When you are run down you will be lacking in optimum levels of vitamins and minerals in your body. That's why you must eat well, and/or supplement until you feel a bit better.

Sorry but I don't have any knowledge of the other drug.

Take care

[lisa___s in reply to overnighthearingloss]

Thank you, I’m definitely run down. Just getting over a chest infection and winter bug.

I’m trying to eat just good old healthy winter foods like stews and casseroles.

But I will get some vitamins tomorrow then. Thank you again 🙂

[robertbob]

Whoops. I just replied to your earlier thread. Glad that they have you started on steroids.

The info below might be relevant. But might be best to get GP to send quick email to consultant first to check that its safe. This article is quite old. But its just first one I came across.

Magnesium Treatment for Sudden Hearing Loss

Ben I. Nageris, MD, David Ulanovski, MD, Joseph Attias, PhD First Published August 1, 2004 Research Article

doi.org/10.1177/00034894041...

Analysis of the individual data confirmed that more patients treated with magnesium experienced hearing improvement, and at a larger magnitude, than control subjects. Magnesium is a relatively safe and convenient adjunct to steroid treatment for enhancing the improvement in hearing, especially in the low-tone range, in patients with sudden sensorineural hearing loss.

[lisa___s in reply to robertbob]

Thank you Robert 😊

[Hidden in reply to lisa___s]

Hi Lisa - very glad for the update. I hope the high dose steroids work well for your hearing loss and pain flare immediately - but agree that your GP or rheum should be referring you urgently to audiology to assess the impact of steroids on hopeful recovery.

I also agree that your rheum should be getting you on an alternative to Hydroxy if possible. Duloxetine is to help with pain relief and to reduce anxiety only.

Hopefully they will refer you to an audiology specialist who knows about autoimmune ear diseases and can advise on most effective treatment once you start to taper off the steroids. If not this is what I would be pressing them for if I were in your shoes. Xx

[lisa___s in reply to Hidden]

Thank you for the great advice twitchytoes, I really appreciate it. To be honest I’m definitely going to speak to my rheumatologist about replacing my Hydroxychloroquine xx

[overnighthearingloss in reply to lisa___s]

I would second that. Magnesium is essential for so many reactions in the body and if you are low in vitamins in general you are probably low in magnesium. I didn't know about it when I was going through hearing loss, but I would take some now seeing the study results. You can't really overdose on magnesium as it is excreted in your urine if the levels do get high.

The whole audiology thing, is that they do a really detailed hearing test over a range of frequencies and if they do a before and after they can see any signs of improvement or not. And suggest next steps as appropriate.

I hope the steroids are taking the edge off your pain.

[Lupiknits]

I’m so glad something has been done for you lisa, and that you’ve given us a follow-up. I have no knowledge of steroids but I can send you a hug x

[eekt]

So glad your doctors are on to it XOX...very hard to do, i know, but try to reduce stress as this will feed a flare. Wishing you all the very, very best xxx

[Krazykat26]

Steroids will definitely help Lisa but do be aware that they can make u feel bit upset n tearful..or angry. It's only the steroids tho n as others have said u have got to avoid stress so if u do experience any emotional upset...JUST BREATHE N TRY TO RELAX xx

[lisa___s]

Thank you all for such lovely advice and support x