PBC Foundation
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Does anyone suffer with tinnitus?

I don't know about anyone else but I have this constant ringing/tv white noise in both my ears and along with restless legs it is so difficult to get to sleep on at night. If I think back, I have had this for many years. Before I could drown it out, usually when busy with my 3 boys but this past 12 months it is there all the time and nothing seems tp improve or disguise it.

Do many have this problem with PBC/AIH?

Also had to be treated for vertigo 3 weeks ago and on medication for that. Could all be autoimmune..where theres one, then there are others.

Thank you


6 Replies

Hi conniefused

I have PBC and have suffered with tinnitus for a few years too. I also seem to have balance problems and feel light headed at times. Someone I knew said to me the other day that I always look as if I'm going to fall over when I'm walking and thats the way I feel alot of the time. Tinnitus is worse on a night when it is so quiet some people find it helpful to put the radio on at a low volume but that doesnt seem to help me much. I also suffer with really bad fatique and stress. Is Tinnitus an auto-immune condition? I also have osteoarthritis. Hope I have helped in any way its always a comfort to know theres other people with the same problems you can confide in.

Take Care x


Hi thank you for your reply, tinnitus isnot an autoimmune condition, but there is ne called meniers disease that is and affects balance and hearing..tinnitus is a symptom.....i feel off balance when using a step ladder: used small one Sat to clean windows...nearly fell off..ooops!.....I dofeel light headed at times and also have fatigue, weakness..in fact today legs feel like jelly..I have days when I don't get too tired or and don't have any wekness..but that the nature of PBC/AIH..it is sinister and we don't know where we are with it. I also have hashimotos disease and osteoarthritis..but so far only in knees.

Be well and take care


1 like

Hi All,

Thankfully, I don't have tinnitus, but my boyfriend does. He sleeps with a box fan running and says it really helps. I don't know if you are in the states or not, but you can get one at Walmart for about $12. Just thought it may be worth a try.

I do have restless legs and constanting tingling in my ankles and feet and trouble sleeping. My doctor prescribed a very low dose of Ambien and it has REALLY helped.

I also have the fatigue, weakness and days when my legs feel like jelly (among many other symptoms). I have AIH & PBC, so I'm on prednisone, cellcept and urso right now and was kind of hoping that some of my symptoms were due to drug side effects. A girl can hope, right?

Thankfully, I don't have the itching yet. I experienced it during my pregnancy (my condition worsened during pregnancy and I didn't know what I had yet) and it was MADDENING! It always came on at night -- I couldn't sleep and scratched myself raw. I feel so bad for those who are dealing with that as well.

I have had some lightheadedness, but thought that was probably drug-related as well. I have not heard ot the balance problems being affiliated with PBC, but that sounds awful to deal with. You should really consult your doctor. Just in case it is another condition or an inner ear problem. At the very least, perhaps there is a prescription that could bring you some relief.

It is nice to know we're not alone, isn't it? I can't imagine trying to deal with an illness like this before the days of the Internet....I would have felt so alone and isolated.

Thank you both for sharing.

Take care,



I have had tinnitus for quite a few months now. I also have balance issues when going round a corner in the car. it feels so unsafe like the car is going to flip over. its an awful feeling and is putting me off driving.


Hi, I know the feeling step ladders are so much fun lol.....and my son just said well mum drunk and had none....he was referring to the fact we can't/should'nt drink alcohol lol....today is I hope a turning point for me because I have started the azathioprine 100 mg per day to be adjusted if needed...so this with urso and prednisolone...my mind set is that it will work and I will not have any side effects.

My last ALT were 212....four weeks ago they were 485.....this happened after consultant tried to lower my steroid dose. I am on 20 mg for time being..I am also going to college in two weeks to do body massage..can't wait.....if energy allows lol....

Best wishes



Great news about your college course, good luck and enjoy. You will be fine, I'm a firm believer in the more energy you use the more you gain.


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