Tinnitus Anyone ?

[Kaurleone]

Dorset Lady gave us a useful summary of GCA symptoms in reply to a recent post. One thing not mentioned was Tinnitus. I had tapered down to 5mg from a starting point of 60mg ( 3 and a half years ago.) Had a bad flare earlier this year. Jaw pain, headache etc, plus Tinnitus which I had never experienced before. I increased from 5mg to 12mg, and am feeling pretty good. Jaw and head pain has gone, but the Tinnitus remains. Reluctant to start tapering while this very bothersome symptom continues. (I've had my hearing and ears checked, all seems okay). Any ideas lovely people ? Thanks in advance.

[SnazzyD]

My tinnitus that developed before diagnosis nearly 4 years ago with hearing impairment in my right ear which got worse at diagnosis. It has persisted into remission. It has good days and bad days but I have to protect my right ear from loud noises which make it worse. This was different to the tinnitus I had with high dose Pred which resolved as the dose reduced.

[Kaurleone in reply to SnazzyD]

Thanks, very helpful

[fairy100 in reply to SnazzyD]

I also have Tinnitus and am waiting for a face to face ENT appointment as I also have balance issues. My Rheumy at the Royal Free said that tinnitus is not a symptom of GCA! However when I went to Boots for a hearing test the audiologist said that she had a patient who lost her hearing due to GCA. Hopefully I'll get an ENT appointment soon.

[PMRpro Ambassador in reply to fairy100]

The link to the HU article and the study is in my reply below but this is the link to the paper - I'd send him a note ...

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

[Kaurleone in reply to fairy100]

Thanks for replying. If you look at PMRpro's reply to me earlier, she gives a link to a study of GCA / Tinnitus. It might be helpful to copy it to your Rheumy. It seems we have to be proactive in disseminating information about the condition. Good luck

[PMRpro Ambassador]

Tinnitus is a recognised symptom of GCA - and other ear problems:

healthunlocked.com/pmrgcauk....

Part of the study was funded by the former PMRGCA Northeast charity.

[Kaurleone in reply to PMRpro]

Thanks for the link, I've had a quick look. So I'm guessing it would not be wise to reduce pred dosage at the moment, maybe better to increase. Frustrating because other than the ringing in my ears, I feel quite good. Thanks again.

[PMRpro Ambassador in reply to Kaurleone]

The trouble with tinnitus is there are several causes - and for some people it can be due to pred. I used to get episodes after using aspirin! It may also take some time to resolve - and yes, it is complicated

[Fiddlersmum]

Hi there - I had tinnitus before PMR and Prednisolone, it's really ramped up the volume since starting Pred, and instead of just being in one ear, it's now in both. I'm hoping that as my Pred dose decreases (or should that be when) then my tinnitus volume will lessen too.

[Kaurleone in reply to Fiddlersmum]

Thanks for replying. So your Tinnitus seems to be is a side effect of pred, rather than a sympton of PMR., if I understand you correctly. Gosh this is complicated.

[Fiddlersmum]

I was diagnosed about a year prior to PMR and Prednisolone, but the minute I started on Pred my Tinnitus increased in volume markedly, it was very noticeable whereas I had almost learned to ignore it, if that makes sense.

[Kaurleone in reply to Fiddlersmum]

Thanks again. It's so hard to ignore, especially when trying to sleep,

[jimcarlow75 in reply to Kaurleone]

Thanks for this thread. I had no idea of the link with pred. Now I think about it my tinnitus has got louder in the time I have been back on pred. Whatever next...

[Abbey17 in reply to Fiddlersmum]

Same here, had it for years and the volume is so loud. I had never related it to this before

[Fiddlersmum]

I use sleep headphones and either play relaxing music or listen to audio books, I find it quite helpful !

[baxternoni]

I have had Tinnitus for quite some time but it has gotten worse after I was diagnosed with GCA. I do wear one hearing aid and it masks the sound but not as much as it use to.

[Kaurleone in reply to baxternoni]

Thanks for replying. Did your Tinnitus get worse after you started taking Pred ? Trying to get get clear as to whether it's a symptom of PMR/GCA or a side effect of Pred. I gather it could be either.

[baxternoni in reply to Kaurleone]

I really don’t know but I think it might be the GCA. I have been off prednisone for two months or so and it is still bad. Right now I may be having a flare. My ophthalmologist just ordered a temporal ultrasound, bloodwork, and an MRA. I hope I don’t have to go back on prednisone.

[brambles22]

Always suffered from tinnitus. The volume and frequency has increased post GCA

[LovetheRoses in reply to brambles22]

Likewise having tinnitus for many years - and I also found it worse with GCA and taking Pred.

[Snuggs]

Hi Kaurleone I have had Tinitus for possibly the last 12 months. I have only recently been diagnosed with PMR. Since I have been on Pred (4 wks) it has definitely got louder. I read the article that PMRpro provided and am now wondering if it was an early warning sign of PMR. I am a nurse and have worked in ENT, we always advised people to play some form of background music or sound. The brain concentrates on that more than the Tinitus so it appears quieter. Well that's the theory but it isn't always successful. Hope it calms down for you. Take care.

[Reddev]

I have had tinnitus as long as I can remember. I am 73 so have had it a long time. I have had GCA for 3 years now and currently on 10 mgs. However over the last six months it has really ramped up in volume. The only way I get a little relief is wearing my hearing aid. At night I do listen to my audible book which helps. I’m not sure what has caused the increase in volume.

[Kaurleone in reply to Reddev]

Thanks for replying. So it would seem that your Tinnitus was pre GCA and pre pred, but perhaps has been made worse by either or both. I'm struggling to work out which is the culprit, GCA or pred, and whether my current dose is too high or too low. Confusing !

[lonelysunrise]

Hello Kaurleone. I developed Tinnitus in my right ear only exactly two years ago which was nine months after I developed PMR and started on Prednisilone. I was by then down to 9mg daily of Pred. I am now on 4.5mg and the Tinnitus has never ceased even for five minutes. It never crossed my mind to associate it with PMR/Pred. After two MRI scans however it seems it could well be something else in my case. Thankfully, I am able to "put it on the back burner" most of the time as I am so taken up with others things! In normal times, having a lovely outing for example does help to take your mind off it. If you are in the UK, there is a helpful Tinnitus charity. The British Tinnitus Assoc. Sending best wishes.

[Kaurleone in reply to lonelysunrise]

Thanks. I'll look up the Tinnitus Association. I suppose I have to accept that this is something I have to learn to live with.

[Lollybygolly]

I’ve suffered from Tinnitus for several years and it impacts on hearing: in a crowded room or with background noise I lipread. To begin with I used the radio as background - to try to forget the intrusion. But my new silence is “with ringing bells”. Anti sickness pills and antihistamines help me, but I’ve gotten used to it now and it no longer bothers me.

[DesertDeuces]

This post may sound silly. I have Tinnitis and I'm listening to it now. It's a high pitch sound that's constant. I believe I got it from using headphones to watch tv. I started using headphones so I could let my parrots sleep at night. Then I just kept using the headphones all the time. It's especially goofy for me now that I'm retired and need to shelter at home due to the virus. The reason I say this post may sound silly is because although I know the Tinnitis is constant, I'm not aware of it most of the time and don't mind it when I tune in to it.

Oh, and I do take Prednisone 10mg per day.

[Flosy]

Hi I've had tinnitus for year too,but got worse taking pred.i am waiting to get appointment with e.n.t.drs have looked in my ears they said they are both clear.

[Kath567]

I have had tinnitus in both ears since my late 40s with sensorineural hearing loss. My hearing aids make no difference to it. It’s louder sometimes. The best thing is to never pay attention to it. I have PMR and am on 5mg prednisone currently.

[Alebeau]

Could just be a coincidence, I got tinnitus in my 60's and all tests were fine like you except of course for some hearing loss due to the constant ringing and buzzing. The best advice I got was to ignore the ringing which seems difficult but I think I do it pretty well most of the time.I listen to music every night with ear buds and a small IPad which muffles the ringing very well. I got PMR at 70 and am now 72+ and at 9 mg prednisone.

Good luck

[Kaurleone in reply to Alebeau]

Good advice, thank you

[Frenchduck]

I have had permanent tinnitus since the age of 45, so for the last 24 years. At the time the hearing in my right ear had changed and every sound was distorted. After an MRI scan at the time I was told it was due to nerve damage that was probably caused by a virus. These viruses are nuisances aren't they! I have 80% hearing loss in the right ear. The tinnitus was in both ears but much louder in the right one. At the time I thought it was going to drive me mad as it stopped me from going to sleep and I was working full time in a very demanding job. I tried lots of things. You could get gadgets to put under your pillow that played various sounds, for example gentle waves of the sea, to lull you to sleep but they only kept me awake too. In the end I lay with a bag of lavender on my brow (for years) and the smell helped me to relax and eventually I was able to ignore the high pitched ringing most of the time. So as some of the others say, you have to learn to ignore it and it does happen with time.

What yours is related to is another question. I had GCA for a few months before it was diagnosed and given medication. During that time the ear noises were terrible. It wasn't just the normal ringing it was rhythmic whooshing noises and vibrations all day long. Along with the other symptoms of GCA, sleep was virtually impossible. At the time I knew nothing of the cause. When I was first put on pred. these noises continued for months and the tinnitus didn't go back to normal until I got down to about 12.5 mg but by this time I was on TLZ as well and perhaps the GCA was more under control by then. I would have to conclude that the GCA itself caused the tinnitus to be worse for me.

[CoziNess]

Yes yes yes. My slight tinnitus went mad once I got GCA . It seems to get worse along with the other symptoms of GCA when im tapering, and also if I push against my fatigue too much. I relax and rest and it goes away after a while. Definitely a correlation.

[Hosers2]

I have had tinnitus as long as I can remember, definitely before getting PMR. It worsens immensely if I take aspirin. I had to cease taking the 80mg (low dose) children’s aspirin which was prescribed to lower BP

[PMRpro Ambassador in reply to Hosers2]

It's a well know adverse effect of aspirin -and I think other NSAIDs too

[Mikb]

I got tinnitus while on pred. I’m a year off pred now and still have the tinnitus.

[MaritimeMags]

Tinnitus is something we could all get, especially when older. It can gradually get worse over the years without it necessarily being associated with PMR. I learn to live with my Tinnitus and am usually only conscious of it when someone raises the subject.I thought I was going deaf recently but a very nice ENT consultant ‘vacuumed’ out my ears last week, carried out a hearing test and then said I did not need hearing aids. This very much pleased me as I am 67.

I do not associate Tinnitus with my PMR but I have no way of knowing whether longterm use of steroids has contributed.

[pugrescue]

I am not sure that you are all talking about PULSATILE tinnitus? I developed that right along with the headache, jaw ache etc. My ears hurt so bad, and I lost hearing in the one ear. Was referred to an ENT, and it was actually she who dx the GCA, She explained to me that if the GCA attacks the arteries involved with hearing (as opposed to optic artery) you will get that. It was so bad that I could hear not only my heartbeat, but actually heard the blood rushing through the blood vessels.....according to the ENT this is not all that unusual with an obstruction. It decreased as I tapered, but if I concentrate I can still hear it faintly. I have been off pred for 4 months now. A bit of jaw pain, and the lingering tinnitus, but no worse than from about 5mg on down.

[marigolds]

I think my autoimmune problems started with a tickle in my right ear which was worrying enough to visit doctor a few times only to be told nothing wrong. Finished up with pulsatile dx can hear my heart beat when I lye on my left side. Doctors and Rheumatologist still say nothing wrong with me am now battling with Sjogren's but have no blood markers so no proof.

[PMRpro Ambassador in reply to marigolds]

Sjogrens requires the blood marker or a lip biopsy for confirmation but the condition called sicca syndrome is exactly the same symptoms without the biomarker. In general it makes little difference as management initially is just managing the symptoms - yet again, no cure.

[marigolds in reply to PMRpro]

Thank you sicca syndrome it must be I will be on to it. My Rheumatologist loves to tell me I have not got Sjogrens although it seems to be quite common with women. He has been trying to make me have the Densomab injection but I am not risking it. I am in enough trouble.

[PMRpro Ambassador]

Oh dear - another who doesn't keep up to date:

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

for bedtime reading maybe?

[Kaurleone]

Hello Jack, PMRpro's reply says it all doesn't it. I've had PMR / GCA for 3 and a half years. Even at 60mg pred I didn't get Tinnitus, it's only popped up following a flare a couple of months ago. Tinnitus is, for me, easily the most distressing symptom. There's no escape. What makes it worse is that you don't know if it's the GCA or the pred, or maybe neither of these. Good luck.

[Hidden]

I too have developed tinnitus while on Prednisolone for GCA. My rheumatologist put it down to high blood pressure and prescribed medication which has brought my blood pressure down but the tinnitus is still there. Some days not too bad but other days it simply roars away. Currently on 8mg after three goes at tapering from 40mg over two years. Anything under 5 or 6mg and my muscles simply seize up. Getting off this stuff is a real problem for many of us.

[PMRpro Ambassador in reply to Hidden]

Most of the getting off is not the "stuff" but the underlying disease for which you are taking it. If that is still active - you can't get off pred without the symptoms returning. Both PMR and GCA are more likely to last 4-5 years or more than be gone in two.

[Hidden in reply to PMRpro]

Thanks for your reply. Getting appointments with GP or specialist is very difficult owing to covid so thanks for the support. Tinnitus remains a mystery for many of us.