Hi . Has anyone experienced new tinnitus on pred. I have weaned down to 17.5 mg and this has come on in last couple of weeks .
Initially I thought it was the Nuseals aspirin but have held that and no change . Driving me a bit crazy !!! Have been on pred now for 9 weeks .
Thanks so much
I think that it is a documented side effect. I experience occasional high pitched sounds in my ears. I am hoping that it continues to diminish as my Pred dose decreases. On the higher doses I experienced Pulsatile Tinnitus. A sensation of hearing a kind of roar in my ears in time to my heartbeat. This has gone completely. I never mentioned this to my doctors, perhaps I should have?
Hi Jane . Thanks so much 😊Good to know I’m not only one ! They must have been very disconcerting for you - in time to your heart beat . Once it went away in on lower doses I think you fine not to mention .
Pred is an amazing drug but god every day I’ve got a new side effect 🙈😅
If it is all you are on, at least you know the culprit. I am on Tocilizumab as well and it has brought a raft of strange symptoms. Fortunately I am not on Biophosphonates ( bone meds) that seem to have a lot too. I gave up Calcium because of bladder irritation. I have to remind myself just how disabling and painful PMR was.
It’s a mine field trying to work out the culprits - yes I agree a couple of times in last week I started thinking is the cure worse than the disease 🙈 but I know I don’t want to go back to the pain . You seem to be body aware and can work out what is causing what for you which is great. The calciumAnd bladder irritation - that’s interesting too. Are you finding the Tocil a keeper ? Despite side effects ?
I was prescribed Alendronate but am holding it and going to follow my dexta S regularly as my first one was perfect . Rheumy wants to start Imuran now and I’m second guessing this also - I just know my body doesn’t do well with meds snd if there is a reaction going I’ll get it ! I reacted to the Pfizer vaccine - myocarditis / pericarditis and that hospitalisation is when my vasculitis was uncovered .2 1/2 months ago
We will get there ! 🙏😊
I have developed the long term effects of Pred that need to be addressed because they are health wreckers if you are unlucky enough to get them eg borderline steroid induced diabetes, hypertension, cataracts. Tocilizumab does enable a swift reduction of Pred minus flares. I don’t feel great though. I see it as a means to get off steroids.
Hopefully you will get there very soon🙏 And the steroid induced probs go away - it’s a rollercoaster balancing the side effects with the treatment . 😊
Pred. caused me to have very dry skin, I also developed tinnitus. I had a procedure (can’t remember what it was called) to remove the build up of wax and dry skin from my ears, it solved the problem.
Oh thanks so much 😊. That’s good to know that it maybe related to the effects of pred on skin tissue and membranes . Makes sense .
I hope it helps, it may be worth getting your ears checked. The procedure was micro suction. 🙂
Thanks so much . What a great forum . 😊
I don’t have PMR (I have RD) but I find this forum very helpful. 🙂👍
Tinnitus can take some time to resolve if it IS due to a drug reaction. But it can also be a symptom of GCA.
However there are other causes - including ear wax build up so worth asking the GP to have a look. I don;t know if GPs still "syring"e ears, but they can tell you if you could do with it
My GP doesn’t syringe ears, she referred me to a local optician who used micro-suction. I had to pay for the procedure.
You might like to take a look at this - it has been published somewhere on this forum with a good explanation written by PMRpro but I can't find it.
RESEARCH: RESULT OF ‘Your Ears’ GCA - 8th cranial nerve involvement.
The full report can be found be following this link rdcu.be/bOZXC
BTW I cannot find it listed as a side effect.
Wow . Thanks so much . This is very interesting . I have found couple sites listing tinnitus as SE of corticosteroids . But this brings another angle . They have diagnosed me with Takaysus vasculitis . So GCA / PMR is the closest posts I can get as Takaysus is so rare . As the Takaysus is mainly aorta / subckavians / carotids - I must check if can affect cranial nerves / tinnitus
As far as I understand, Taky and Synogrens are like GCA members of the Vasculitis family.
Hopefully someone else on here can confirm that statement. I know who🤔
Sjoegrens can have inflammatory vasculitis as part of it but it isn't only vasculitic.
pubmed.ncbi.nlm.nih.gov/315...
says " Systemic vasculitides as a group of inflammatory disorders of blood vessels may show clinical manifestations in the ear. This article reviews the recent literature about vasculitis of the ear or the cochleovestibular system, focusing on giant-cell arteritis, Takayasu's arteritis, polyarteritis nodosa, Kawasaki disease, microscopic polyangiitis, granulomatosis with polyangiitis (GPA), eosinophilic GPA, systemic lupus erythematosus, Cogan's syndrome and Behçet's disease. ...
In patients with vasculitis, hearing impairment is a frequent problem, followed by tinnitus and vertigo ..."
Pretty much any form of vasculitis can affect the ear in some way.
Wow ! I’m learning so much here compared to all my endless searching before joining forum .This is amazing , thank you alll sooo much 😍
It's our specialist subject and we have years of experience and thousands of patient journeys to draw on 
Thank you for the info. 🙂
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