SheffieldJane5 years ago

Oh dear, you have been cast adrift haven’t you. It sounds like you need an appointment to fully discuss the implications of your disease with the Rheumatologist.

As for the Tinnitus symptom. I think it is a side effect of Prednisalone. I had it too when I was on a higher dose. It sounded like a sort of buzzing pulse in my ear. I haven’t been on your high dose though. I wonder if that makes it worse? Mine was intermittent too, not constant and seemed to happen when I altered my posture. It has completely gone now. I have had diagnosed PMR for 2 years and I am on 6.5 mgs of Pred. I am also on Atenolol for raised blood pressure. I would visit my GP at the very least. I didn’t because I sensed that it was a side effect and that my surgery would view it in isolation. You sound understandably worried and they shouldn’t have left you like that.

Sunnyd7 in reply to SheffieldJane5 years ago

So glad to hear your tinnitus went away. I have had it since I started on Prednisone. It drives me batty!! I am currently on 8 mg starting a 35 day 1 mg taper (DL's taper pattern) in April. I am hoping it will go away completely.

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PMRproAmbassador5 years ago

Tinnitus CAN be a GCA symptom but although pred is sometimes used to manage tinnitus it can also cause it!

Can you call your doctor before the appointment?

Mstiles in reply to PMRpro5 years ago

I will try. Last time I only talked to the physicians assistant and the doctor said he didn’t need to see me.

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Hidden in reply to Mstiles5 years ago

But you needed to see him. I will be keeping fingers crossed for a sleepfilled night for you.

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PMRproAmbassador in reply to Mstiles5 years ago

You are employing him - not the PA.

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Mstiles in reply to PMRpro5 years ago

Thank you!

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SheffieldJane5 years ago

I have just read your profile and gosh poor you, no wonder you feel worried. Your Rheumatologist doesn’t sound very good, I wonder if you could seek one who is more interested and knowledgeable about GCA. The response to your improving blood test results puzzle me. Of course they have improved you are on Prednisone. Let’s hope that your Opthalmologist proves to be much better and is able to deal with your very rational fears for your eyesight. Incidentally, blurred vision is another side effect of Prednisone. Stick with us. There are some really experienced people on here who know what they are talking about. The good news is that you are on Prednisone and that is safeguarding your eyesight. People are often started on 60 mgs for GCA, so query this, if that is in fact your final diagnosis. Keep in touch.

Mstiles in reply to SheffieldJane5 years ago

Thank you! Yes I feel cast adrift. There is a shortage of rheumatologists where I am, like everywhere I guess.

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CelticPMRGCAuk volunteer5 years ago

Oh poor you, as if Pred-induced sleepless nights aren't enough, without horrid noises in your ears adding to the stress. Have you had your blood pressure checked? Not only can steroids cause such noises in the ears, but they can also cause a rise in blood pressure which could also be the culprit. Also, some people when diagnosed with PMR/GCA are also found to be anaemic - another possible culprit for the worsening tinnitus.

With regard to your difficulties in trying to reduce from your starting dose, did your PMR/GCA symptoms settle at the 40mg dose? If so, it points to the initial reduction to 30mg being too large a drop, putting you into a yo-yo situation with the doses - a situation which can often prove problematic.

Are you someone who had raised markers of inflammation (ESR and CRP) at diagnosis? If so, these tests should be repeated - if they show continuing inflammatory markers, you may need to have a higher steroid dose to get the inflammation under control.

It's good that you have an appointment to see an ophthalmologist, but, as PMRpro has mentioned, you need to see your doctor/rheumy, too.

Mstiles in reply to Celtic5 years ago

After going on 40 mg The PMR symptoms were gone. The headache was not as bad as it was but my head still felt not right, pain was “lurking” around. Yes I had high sed and ESR rates at diagnosis, I also had a UTI just to complicate things! More details in my profile. 2 weeks on 40 mg and an antibiotic the tests were normal. My profile has more details

Thanks for understanding! Nights are the worst.

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Mstiles in reply to Mstiles5 years ago

I’m also anemic, not treated yet

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CelticPMRGCAuk volunteer in reply to Mstiles5 years ago

The anaemia may not need treating - mine resolved spontaneously - but it should be monitored.

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CelticPMRGCAuk volunteer in reply to Mstiles5 years ago

Yes, one would expect the starting dose of 40mg to deal with the symptoms of PMR, but 40mg may not be sufficient for those of GCA, for which many people start on 60mg and some with visual symptoms are given even higher doses by way of infusion.

If I have understood correctly, although you say you have been on 40mgs for 5 weeks in all taking into account the time yo-yoing the doses, did you actually reduce initially from the 40mgs to 30mgs after just 10 days? If so, that is really too soon, especially for such a large reduction.

I can so understand the "nights are the worst" with tinnitus - it might perhaps help to have a radio on with some soothing music at low volume.

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Mstiles in reply to Celtic5 years ago

Yes I tried that for a few days as rheumy instructed because the blood tests were normal. Didn’t work so went back to 40. After a week or so tried to go to 35 but again symptoms returned this time with more pain and stiffness and now the ear noises and neck and jaw, etc. stiffness so again went back to 40.

Have a call in to the rheumy

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CelticPMRGCAuk volunteer in reply to Mstiles5 years ago

Good - let him/her know slowly slowly is key to successful reductions!

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PMRproAmbassador in reply to Mstiles5 years ago

The raised ESR and CRP could also have been added to by the UTI. Two weeks on abx and pred would certainly sort that out!!!

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Mstiles in reply to PMRpro5 years ago

What is abx?

Yes it did stop the PMR pain and most of the head pain. He did no other tests

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DorsetLadyPMRGCAuk volunteer in reply to Mstiles5 years ago

I’ll jump in, as it’s nighttime in Europe and daytime here in NZ, sorry PMRpro!

Antibiotics!

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Grants1485 years ago

I have had a pulse like noise in my head for quite a long time,it is really annoying,l hope things improve for you xx

lesley20155 years ago

I have PRM/GCA and have suffered from Tinnitus since almost the beginning, I too was on 40mgs preds. Really not sure if it was the condition or preds that triggered it. I am now on 7mgs and still have a constant wirring in my ears, if its noisy I almost can ignore it but going to sleep is very annoying.

Mentioned to Rheymy and GP and neither seemed interested or concerned, so I have no dea whether it will eventually go or if now its triggered I will be left with it.

My tinnitus does not co-incide with a flare.

Best wishes

DorsetLadyPMRGCAuk volunteer5 years ago

Hi,

Your initial reduction was much too quick. You should be on the initial dose for about 4 weeks to mop up the built-up inflammation, plus I would say, as has Celtic, that 40mg is the minimum dose for suspected GCA. You probably needed a bit more. Rheumy’s fault, not yours! Plus just because your bloods were in the “normal range that doesn’t mean everything is okay, it just means the Pred is doing it’s job.Your Rheumy may think the biopsy is unreliable, but so can the bloods be!

In both PMR and GCA the symptoms are the key!

I think your tinnitus is probably more to the Pred, but you do need to speak to either your Rheumy or your own doctor.

Good luck with your Ophthamologist appointment and please let us know the outcome.

CT-50125 years ago

Regarding your tinnitus, the best advice given to me was to think about something I have really enjoyed, a sort of distraction, works for me at night. I've had tinnitus most, or maybe all my life as I don't remember not having it. Do you have an organisation for deaf or hearing impaired you could contact? They have things to help with tinnitus. All good wishes.

Mstiles in reply to CT-50125 years ago

Thank you

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Mstiles in reply to CT-50125 years ago

Thank you CT-501. I tried your suggestion last night and once I was able to pull my mind away from worrying about a flare I was able to “go” to my favorite place in nature and it really helped. Thanks a million.

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ValFF535 years ago

Hello Mistiles

Sorry to hear that you are experiencing more tinnitus at the moment.

I am a Staff Nurse in ENT. I cannot say whether there is a link with PMR/GCA flares or Prednisolone.

However, tinnitus often worsens when we are unwell, tired or stressed. It is always most noticeable in quiet environments and often makes sleep difficult. The whole thing can become a vicious circle.

There is not any treatment for tinnitus and distraction techniques are recommended. There is a wealth of information online.

I would recommend asking for an ENT referral if your tinnitus is affecting your quality of life which is already hugely compromised with the GCA and PMR.

I wish you well.

Valerie

PMRproAmbassador in reply to ValFF535 years ago

When tinnitus is a symptom of GCA - and it can be - then there is a treatment: pred. I probably have an overlap of PMR and large vessel vasculitis that just managed to affect jaw and ear for some time and caused tinnitis. After being put on pred for PMR it resolved completely and has never returned.

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Mstiles in reply to PMRpro5 years ago

Thanks PMR pro. Yes with this thing I’ve got going on my jaw and right in front of my ear is sensitive so could be. I’m wondering about the vasculitis elsewhere. Are GCG patients tested for this?

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PMRproAmbassador in reply to Mstiles5 years ago

Tested for what?

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Mstiles in reply to PMRpro5 years ago

Large vessel vasculitis

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PMRproAmbassador in reply to Mstiles5 years ago

There are no "tests" as such - depends on access to a PET-MRI before ever starting pred, once you are on pred the results are damped down too much.

Bit of a heavy read but there is this now

ard.bmj.com/content/early/2...

Maybe some rheumies will read and comply...

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Mstiles in reply to PMRpro5 years ago

Thank you for posting it. I will check it out.

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ipsidipsy5 years ago

Your story of the problem you have with hearing noises really struck a cord with me.

I was diagnosed with GCA 4 1/2 years ago. When I started taking 60mg of prednisolone the noises in my head started, never suffered with tinnitus before that. The noises ranging from police sirens, car alarms and as you describe "a motor running". The noises were always worse at night and used to be very frightening.

The noises continued until I reached a dose of prednisolone of about 30mg when they subsided, although I had them but nowhere near as bad as at first. I mentioned it to several medics and they either dismissed it or told me it could not be the prednisolone.

Now I take just 1mg of pred I do not experience any of the above, in fact, if I remember rightly, they more or less went away at 10mg. Therefore I have proven to myself that it was the high doses of pred that caused the problem.

I do hope you get comfort from the good advice on this forum and wish you well.

PMRproAmbassador in reply to ipsidipsy5 years ago

I do wonder why doctors deny information that is commonly known??????

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SheffieldJane5 years ago

I really think this disease has taught me huge tolerance for pain and potentially distressing symptoms a sort of “ bring it on, do your worst “attitude. I was thinking that when I had root canal work the other week, the old me would have been terrified. So PMR and GCA make you brave yay!

sondya5 years ago

I've had tinnitus for many years, not connected to GCA. It is like cicadas sawing away in my ears. Drives me nuts, but only when I am aware of it. At night I watch movies in bed until I sleep, during the day there is plenty of noise and distraction and I don't notice it. I don't think steroids reduced or increased the occurrence. I think it's here to stay, like eye floaters. Blame lies with listening to music full tilt! Always wanted to be in the middle of an orchestra. And ageing. Of course.

JanetGarrettN in reply to sondya5 years ago

sondya

Good evening Sondya. Though I do not have GCA at least at this point I was diagnosed with PMR and October 2017 at age 55. I have had tinnitus as a side effect and withdrawal of tapering from Lyrica and the fall of 2015. I'm with you there's usually background noise but sometimes. Doesn't even help I used a sound machine at night listening to the waves and the seagulls. Many of us seem to have ear issues with no real definitive reason.

Janet

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sondya in reply to JanetGarrettN5 years ago

Don't ever put GCA on your Santa wish list! Though in retrospect, once steroids took control, it was beaten, done with, vanquished. There'll be a headstone (ha ha, how apt)

'Here Lies A Nightmare - Gone and Forever Forgotten'

December 2016 - June 2018

(that's when I come off prednisone and its side-kicks)

Keep well, Janet

Cheers

Sandy

(Auckland, New Zealand)

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JanetGarrettN in reply to sondya5 years ago

I wish you well to between now and June and Beyond. 🌎🙏💕

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sondya in reply to JanetGarrettN5 years ago

Thanks, Janet. It's hot, humid summer. Cicadas during the day, crickets at night. Nice-ish distractions.

Always mindful there is a wary 'beyond' but at least I know the drill.

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