Hello my name is Jackie and I am 54, I want to tell you my PMR journey briefly to date so have left out some bits, but basically in January this year I had stiff painful hips and knees, so went to my doctor and had my blood tested, I was told all was ok (CRP 9.9 at this point) . Then in the following months I also developed stiffness in my shoulders and was unable to raise my arms to even brush my hair. I was very tired and may have had a slight fever during that time. I returned to the doctor in May and he immediately put me on 20mg prednisolone (but didn't repeat a blood test) and suggested that I had Polymyalgia, within a day my legs improved and within a week I could raise my arms above my head. All was well until I started to develop tinnitus after 2 weeks of taking the steroids, my hearing also started to get worse, for example I found it harder to hear people talking to me in a noisy enviroment. I have been sent for a hearing test and have been told that it doesn't appear to be auto immune related. So my Rheumy wants me to taper the dose quickly with blood tests every two weeks, as he wants to confirm the Polymyalgia diagnosis made by my doctor, rather than keep me on steroids when the cause maybe something other than PMR. So I have started to decrease the dose and am now at 12.5mg, so far none of my joint pains have returned but my hearing has got a bit worse and I am getting occassional pains in my ear, & in my jaw joint. I told my doctor but he says I don't have GCA. I am still very frightened about reducing the dose to 10mg which is what I should be doing if I continue to follow the Rheumy's schedule of each week reducing by 2.5mg until I am off steroids, only stopping if any of the pains return which would confirm the polymyalgia diagnosis. I have had all the help from experts that I could expect and normally I would feel very reassured but I don't, I feel alone even though everyone is trying to help and understand me, I feel they will soon start to lose patience with me. I don't want to have to lower the dose and get stronger symptoms of GCA, but the symptoms I have atm don't seem to be enough to convince anyone but me.
Worrying about my hearing while reducing predniso... - PMRGCAuk
Worrying about my hearing while reducing prednisolone
"I told my doctor but he says I don't have GCA" - which doctor? Your GP or your rheumatologist? Is your jaw pain claudication - i.e. is it there when chewing and goes away when you stop or is it there all the time? Is the rheumy aware of that?
In your position I would contact the rheumy. I wouldn't expect a GP to be aware of the nuances of GCA - and there are experts who are of the opinion that hearing/ear problems can be associated with GCA although it is rarely mentioned in the texts. Officially I only have PMR - but I had tinnitus with PMR which went away with pred. If the blood flow to the optic nerve can be affected by GCA, so can the blood flow to the auditory nerves.
If that is the case - no it wouldn't appear to be autoimmune-related, it would be vasculitis and ischaemia related I think, due to poor blood flow but I'm not an expert.
HOWEVER - you say your tinnitus started after starting pred - and pred is listed as a drug which can cause tinnitus, even though there are ENT specialists who deny it:
nvrc.org/wp-content/uploads...
It's a big question - whether it is the pred or possibly GCA. It isn't one I'd leave to a GP though. If the tinnitus and other symptoms continue to get worse on reducing to 10mg then I would definitely take that as an indication it is something other than the pred in the meantime and make every effort to get to see the rheumy as an emergency - if not, then go to A&E at his hospital asap. Specialists aren't there all the time - but they are at the end of a phone and will come in if required.
Thanks for your reply, to answer your questions I told my GP about the hearing, and so far I haven't had pain during chewing food. I did think the tinnitus might be related to the pred but the tinnitus hasn't reduced as the pred has reduced. Confused about the difference between auto immune and inflamation or vasvulitis, I thought they were sort of the same, as inflamation is caused by the body attacking itself.
Inflammation can be due to other things but yes, in this case the vasculitis and inflammation are autoimmune in origin. The autoimmune disorder causes the immune system to attack parts of the body as if it were foreign, but it all depends on which part of the body is being attacked and damaged. In vasculitis it is damage to the blood vessels and the result is inflammation.
I meant the comment from the hearing test:
"Autoimmune inner ear disease (AIED) is a syndrome of progressive hearing loss and/or dizziness that is caused by antibodies or immune cells which are attacking the inner ear. In most cases, there is reduction of hearing accompanied by tinnitus (ringing, hissing, roaring) which occurs over a few months."
I imagine that was what they meant it wasn't.
Although the effect on the blood flow to the ear is due to autoimmune damage, the effect on the ear itself is indirect, the problem is not due to damage to the inner ear itself, but possibly to poor blood flow to the area of the nerves and they suffer as a result. That what happens in the loss of vision that may happen in GCA - the blood flow to the neerve is reduced, even stopped, and as a result damage occurs.
If the jaw pain isn't happening while you are eating it is less likely to be the claudication that occurs in GCA but it is impossible to be sure. There are other forms of vasculitis that could have an effect.
Thanks again for taking the time to reply. This is what is so stressful about this condition there are so many uncertainties and the stakes for getting it wrong are so high.
Reading many posts it does seem that there is not national standard for dosage of Preds or indeed how and when to reduce these. My GP provided me with a 'Management Plan' the dosage recommendations were taken from his computer system.
I have been diagnosed with GCA and PMR. The regime is 60 mg tapering every 2 weeks by 10 mg until 20mg. Then reduce by 2.5 mg every 4 weeks until 10 mg. Then reduce by 1 mg per month.
My first symptoms were hearing loss, whether this was associated or not I do not know. I have tried to get PMR/GCA UK to offer advice through their website, but did not get a response. I did find some American research that suggested this was rare (4 in 271 cases researched), but cannot download the detail - not being a medical / research specialist. Still suffering from hearing problems, but have not received any recognition that it may be associated with PMR/ GCA.
The research conclusion is "Sensorineural hearing loss can be a preceding or concurrent symptom of temporal arteritis. Recognition and treatment may lead to partial or full recovery. It is not certain whether the time from onset of hearing loss to diagnosis to institution of therapy influences recovery."
I hope this helps.
There isn't a national standard as much because everyone is different and needs a different dose - which they will achieve at different rate. The amount of pred absorbed varies from 50%up to 90% (the so-called bioavailability) - so on an apparently 20mg dose one person may really be on 18mg, another on only 10mg. Then everyone's disease activity is different - some will need more to manage the inflammation than others.
This paper
rcpe.ac.uk/sites/default/fi...
is an outline of the reduction scheme the Bristol rheumatologists used, finding it reduced the rate of flares from 3 in 5 on other commonly used reduction schemes to 1 in 5 with this.
But ANY reduction isn't relentlessly to zero - it is to find the lowest dose that manages the symptoms for the longer term. And it must be done with careful monitoring of the patient's symptoms - they are always trumps.
Thank you for the information.
I understand the need to tailor the initial dosage and reduction scheme to suit the patient. However, there does not seem to be any national guidance (like that in the Bristol scheme) as a starting point. I live in the Highlands and it would seem that the GP is picking up on NHS Scotland Guidance on his IT system, which differs from Bristol.
That said, I have not been referred to a rheumatologist, nor was the possibility of a biopsy suggested, although that is referred to in the handout from the GP. The BSR and BHPR Guidelines for GCA show that even if the biopsy is negative, treatment is undertaken as though this is positive. So what is the point of the risk of a biopsy recommended in the Bristol paper?
My main concern (and challenging in normal day to day life) is the hearing loss. In the morning the hearing is OK but as the day progresses this deteriorates. Should I ask for referral to rheumatology or indeed ENT, assuming there may be treatment available other than Predisolone for the hearing loss?
Well, the "Bristol" paper was presented in Edinburgh to the Royal College! Last time I looked that was in Scotland - and we haven't left the United Kingdom yet so the NHS in Scotland is still part of the NHS UK...
The purpose of doing the biopsy is if it is positive then you will never have anyone question the diagnosis at a later date. There is not a lot of risk associated with the biopsy - it is done under local anaesthetic as day surgery. If you are thought to possibly have GCA then you NEED to be under a rheumatologist, it is beyond the scope of a GP to know enough about it.
There is a Scottish charity:
pmrandgca.org.uk/about-pmr-...
and they have a helpline.
My GP diagnosed GCA and PMR on 5 May 2016. I started on 60mg Predisolone. Currently trying to get from 20mg to 17.5mg with one 'false start'.
No referral to rheumatology. I think I would have difficult in telling my GP that it is beyond his knowledge, but I will find a way, especially if the hearing does not improve. At least I might not hear the response!
Thank you for providing the link, which I will follow up and thank you for all the advice.
jac-s, my first autoimmune diagnosis was AIED about 6/7 years ago. Symptoms were increased tinnitus, especially pulsatile tinnitus where the noise in your ear is in time with your heart beat, like an army marching through your head 24/7 and so loud it drowned out any hearing I had. It truly was nasty. I also had a lot of vertigo attacks. Treatment was high dose Pred and steroid injections directly into the ear through tubes that were put in. Unfortunately I lost a lot of hearing anyway, am down to approx 20-25%.
I have read that tinnitus can be a symptom of GCA. I haven't noticed any increase but I have lost more hearing in one ear since I was diagnosed with GCA. I know now that I had PMR at the time of AIED but it wasn't diagnosed, as a consultant's note had said that I needed more work up for 'systemic vasculitis', so it seems they were considering my ear problem a type of vasculitis. I only read this note recently, nothing was said to me at the time! As for tinnitus, it is thought to occur when you have some hearing loss and the ear tries to fill in the missing frequency.
I wish you the best and stand fast in getting the right treatment and feeling better soon.
Cheers
Thank you for your replies and for sharing your experiences. My tinnitus is not pulsating, but a continuous ringing, so it doesn't sound like AIED and the ENT consultant said he didn't think it was auto immune. So it sounds more like vasculitis of some sort, I wonder why the ENT didn't suggest that as a cause? Anyway, I am going to have to get to speak someone again, part of the stress of this illness seems to be just getting the correct diagnosis and feeling like you are trying to diagnose yourself, which is daunting when its all new to you and you only have bits of knowledge, it seems crazy to be questioning the directions of a proffessional Rheumy but that seems to be what I will have to do
jac-s, just to clarify, not everyone gets the pulsatile tinnitus with AIED. I did have the regular tinnitus as you said a continuous ringing. It is unsettling to have it but ask your doctor about ways to mask/ignore it.
Cheers
My Rheumy said only I could decide the dose of Pred I needed to be on and that he would not tell me how fast to reduce. I'm also on Leflunomide 10mg a day as a steroid sparer - so far with no ill effects and still waiting for the benefits which take 4-6 weeks to build up. Good luck.
Don't be scared. Go along with what they say, even if you suffer in the meantime, that way you will have ticked their boxes and will be able to move on. Ask your doctor if he or she minds you recording your visits to enable you to understand what is going on, if necessary tell them you forget once you have left the surgery (lots of us do) - it concentrates their mind considerably and instead of standard answers they will have to think a bit and really explain what they are trying to achieve, which will give you more confidence.Also, make a list quietly at home of all the questions you want answered, take it with you and tick them off in front of him or her as the answers come. Good luck.
Reading all these is like a light bulb switching on. I was profoundly deaf anyway but one weekend whilst I had undiagnosed PMR I lost all hearing in my right ear . My hearing consultant gave me 20mgs Pred as sometimes it can restore lost hearing. It did n't but magically all the other pains went. When I stopped they all came back with a vengeance and I got diagnosed. however I never knew the link to the lost hearing!
This is very interesting to me. My initial symptoms back in October 2016 were inner ear problems. Initially my GP treated me for Eustachian tube disorder but when after 2weeks these symptoms were joined by an unusual headache and painful scalp he did an urgent blood test which confirmed very raised inflammation levels the same day and I started on 40mg prednisolone plus the usual companion drugs. I was lucky enough to get a referral to a rheumatologist within 2 weeks and 7 weeks on am down to 20mg pred and awaiting the results of a before Christmas CT scan. So far so good BUT, I still have the annoying ear symptoms, like cold water rolling around in the inner ear, which may or may not be affecting my hearing. Psychologically it's very distracting, as if high dose steroids weren't distracting enough. I don't have tinnitus.
I saw my GP this morning who has given me an ENT referral but I imagine I will wait several weeks at least for that appointment. Has anyone else had similar ear problems with GCA?
I also asked my GP if I could have a Dexa scan to see if I really needed to take Alendronic acid but he suggested that I should take it with steroids even if a bone scan showed no osteoporosis. I feel more than a bit over-prescribed, previously having been taking nothing at all. I am 68 and was previously active, fit and healthy and bad never heard of arteritis, like so many others.
So I'm near the start of my journey, still feeling lucky that my GP was on the ball and diagnosed it, but not ending the steroid side effects, especially loss of brain competence.
There has been a survey done in the last few months about ears and GCA after it was realised that 3 out of 4 patients in one support group had hearing/balance problems.
healthunlocked.com/pmrgcauk....
I don't know if it is still ongoing - you could enquire.
I personally would insist on the dexascan and wait on the AA - after 5 years on pred at above 10mg I have only a negligible change in bone density and have only ever taken calcium and vit D. AA should not be taken for more than 5 years and the most recent thought is far less to avoid the very unpleasant longer term adverse effects. If you don't need it there is little point in taking it since increased bone density does not always mean fewer fractures - and it merely adds another layer of potential side effects. HeronNS is the resident bone density expert and has increased her bone density in a year by several points, from -2.0 osteopenia and the threat of AA to -1.6, osteopenia and no treatment required. Being previously fit and healthy and active could well mean your bone density is fine.
LizzieGuinn, my first indication that something was wrong with my hearing was the sound of running water in one ear....and I agree, very distracting.....the tinnitus came later.
Cheers
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