Tinnitus re Withdrawal of Prednisolone

[Wendymoore59]

I have developed tinnitus since withdrawing from prednisolone. Could it be the steroids causing this?

[SnazzyD]

Might do, but lots of things can cause it. When you say withdrawing from Pred, do you mean down to zero or just a lower dose? Tinnitus is usually a problem at high doses or before diagnosis with GCA. Commonly tinnitus can be caused by ear wax build up or fluid in the middle ear due to congestion in the tube that connects the ear with the throat. If you have allergy symptoms, even very mildly, can cause this build up of fluid. A look down your ear by someone with a scope, will tell you if these are the cause. Get the simple things ruled out first and go from there.

[powerwalk in reply to SnazzyD]

Is this a well known issue with GCA? Ive been getting it, its driving me mad.

[SnazzyD in reply to powerwalk]

It has become more known about. I certainly had it with some hearing loss prior to diagnosis. Pred got rid of it in that it replaced it with blood pulsing instead of weird sounds. Hearing didn’t improve though. Then got covid last March and the tinnitus is now permanent, but that my be coincidental. Have a read of this and it’s worth searching tinnitus on this site pubmed.ncbi.nlm.nih.gov/314...

[Wendymoore59 in reply to SnazzyD]

Thank you. If only we had all the answers. There are so many could be and maybes and contradictions in medical reports and peoples presenting issues can have hundreds of variables. It is just so difficult to ever really know the exact truth. I think maybe the best way is to try as far as possible to do detective work on what we think and then to then just look positively forward maybe trying different things to help and get our bodies and minds fitter. At the end of the day acceptance is the key but something I struggle with because I prefer answers and solving problems.

[PMRpro Ambassador in reply to Wendymoore59]

Unfortunately, medicine and biology aren't maths and physics ...

[Wendymoore59 in reply to SnazzyD]

I hope you are ok from the covid sounds horrendous.

[powerwalk in reply to SnazzyD]

I will, thanks Snazzy.

[PMRpro Ambassador in reply to powerwalk]

Involvement of the 8th cranial nerve in GCA has become better known thanls to PMRGCA/NE wh funded the first stage of this research:

healthunlocked.com/pmrgcauk....

[powerwalk in reply to PMRpro]

Tk u. I will mention to rheumy in two weeks, probably be met with a blank stare!!!!

[PMRpro Ambassador in reply to powerwalk]

The link to the paper is there isn't it? Show him ...One of the authors was the guy who did last week's webinar.

[Wendymoore59 in reply to SnazzyD]

Thank you. I was on 15mg in Jan Feb and March and have reduced from 15 to 7mg. Not a large dose but in the last 6 weeks have experienced tinnitus. I have had my ears checked for earwax and one ear has a small amount so don't know if that would be the cause. I have had both astra zenica jabs in March and June and I have read there is a possible connection.

[SnazzyD in reply to Wendymoore59]

Did the person look beyond the wax and comment on your eardrums?

So you’ve dropped 9mg in two months to 7mg? Any reason? How are you feeling generally?

[Wendymoore59 in reply to SnazzyD]

I dropped 5mg (I think) initially to be honest I can't remember but I am now on 1mg reduction a month. I am ok just ringing ears hot flushes and sometimes a bit hyper but the flushes have been there since the beginning. I had my ears looked in at specsavers. She just said one ear was clear and the other had a bit of wax but not enough that it needed clearing.

[Wendymoore59 in reply to SnazzyD]

Sorry I forgot to add that the reason for reduction is that the inflammation I had in my upper back seems to have decreased and my inflammatory markers are back to normal so the gp has been monitoring withdrawal. It might be linger than 2 months. But nit longer than 3. Is this not normal?

[SnazzyD in reply to Wendymoore59]

So, normal markers can show the Pred is at an effective level and is not a guide to whether PMR is there or not. 1mg per month is standard but the lower you go, the more you need to be careful of not over shooting your current required dose. The other reason to slow down is because your adrenal function may not recover at the same rate. Under 8mg they need to make up some of the cortisone that is not being provided by the Pred. Many people find this bit not as easy as the docs suggest it should be. 0.5mg drops is more effective in fine tuning your current effective dose and it also stops the body going into a crash because your adrenal are given more time to realise they need to work.

[Wendymoore59 in reply to SnazzyD]

Thank you. How would I be feeling if my system was struggling with reduction? What are the signs?

[SnazzyD in reply to Wendymoore59]

Have a read of this that comes from the FAQ on the right of the page, recently put together by the volunteers. healthunlocked.com/pmrgcauk...

I suffered from adrenal insufficiency and it felt like I was permanently about to come down with the flu with heavy tiredness, general achiness, emotional, couldn’t get up in the morning, nausea, the list goes on.

[Wendymoore59 in reply to SnazzyD]

How awful. Are you ok now?

[SnazzyD in reply to Wendymoore59]

I think so but as with all these things we have, one isn’t sure what is what. Took 7 months to stop the main after effects. If I do get a normal virus, the last in March, I get what feels like a re-emergence of the Covid type symptoms like burning from the nose all the way down into the lungs. Also, my taste becomes deranged. I don’t seem to have any of the awful organ troubles and long lasting respiratory issues.

[DorsetLady PMRGCAuk volunteer in reply to Wendymoore59]

Also have a look at this - healthunlocked.com/pmrgcauk...

[SnazzyD in reply to Wendymoore59]

As a rough guide general withdrawal because your body is expecting more Pred than it got with the new dose kicks in within a day or few and lasts for about a week. This can feel like aches, headache, fatigue etc. A flare of disease comes in a week or two later, but in the early months that can be within a day. This is usually tiredness with pains similar to pre-diagnosis.

Low adrenal function once under about 8mg makes one feel like the the others without the disease pain but I felt pretty fluey achey. Also, tiredness, being emotional, shakey, ‘empty’ feeling, nausea, sweaty. This can come in as a result of extra demand on the body like a shock or too much activity or illness, or no obvious reason. It can last all day or be at certain times of the day.

If you’re unlucky or are reducing too fast you can get all three!

[PMRpro Ambassador in reply to Wendymoore59]

The pred itself is to reduce the inflammation, less/no inflammation means lower/normal blood markers. That doesn't mean that the underlying cause of the inflammation has gone away - it is like sticking a bucket and mop under the dripping tap which is making a puddle. The pred has cured nothing, it is a management strategy. PMR is a chronic condition - reqquiring at least some pred for up t a year for one patient in five - for the other 80% it is for a lot longer. Half of patients are off pred in under 6 years but how long it is for any particular person cannot be forecast. The rest of us need pred even longer at some level although for the vast majority it is under about 5mg long term.

If you get to too low a dose for the inflammation being caused by the disease activity then the symptoms will return - as the bucket fills up and overflows. If you have only been on pred since February and are already down to 7mg then the likelihood of great difficulty because of adrenal function being poor is quite low. The usual timescale is felt to be a month for every month on pred above 5mg. But everyone is different - and in the case of PMR. the disease is a greater limiting factor than the adrenals at this stage.

[123mossie]

The optimistic thing to add is that tinnitus can resolve spontaneously 🙂

[Wendymoore59 in reply to 123mossie]

Thank you. Good to know.

[SnazzyD in reply to Wendymoore59]

Anyone can get it, and often never know why and as Mossie says, it can just stop as if someone has flicked a switch. I went to the doc because it went on for months and my hearing got worse. At the time it didn’t lead to my diagnosis of GCA because I had no other symptoms.

[whitefishbay]

Well, my hearing has taken a nosedive since PMR started....is it due to PMR, pred or old age (I'm 64) who knows. I hate it.

[AtopicGuy]

I developed a very faint, high-pitched whistle in one ear just after my second AZ Covid jab. I think it's a rare, recognised side effect. Could it be that? The Covid disease can leave you with tinnitus, too.