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PMRGCAuk
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Sore ear

I seem to have a sore right side ear that wakes me up this has been going on all the time since diagnosed with GC/PMA , my neck only hurts at night as well when in bed, I'm tapering down I'm now on 15m predisinone from 40m but until a week ago I was finding the tapering distressing feeling so ill, but now I'm not so bad, still have pain in my right side it's been like this from the beginning, I was wondering if this is to do with my illness or something else? I only have an appointment with my rheumy middle April, also my eyes are getting so blurred yet specsavers say cataracts not ready yet! That was3 weeks ago, my blood pressure keeps going up and down I have appointment with the nurse Wednesday to check ! But I do worry about my blurred vision yet ok when I put my glasses on, hope I'm not being dramatic as have personnel stress going on as well. Can you advise me please

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Hi Jamie345,

Think you’ve probably hit the nail on the head with “personal stress” factor. Stress is the overriding factor for most with our illnesses.

The blurred eyes could be a side effect of the Pred along with the cataracts, so mention to Rheumy, you might find drops help - and keep in touch with optician regarding cataracts - I found mine deteriorated quite quickly.

Also mention the right sided pain to Rheumy, albeit that PMR/GCA is usually bilateral, it might be that.

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Thank you for your quick reply I have been using drops regularly my eyes seem to be watering a lot as well, I thought I'd go to another optician I used to use small shop but trained by his father who I used to go to, but vanity got the better of me this time and i wanted more stylish glasses(his are old fashioned designs) plus need to help the moon face and double chins ! Just don't know how I'm going to tell him that! But hey ho!

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Those are typical signs of dry eye - yes, they water when you don't produce proper tears! If I were you I would go to him for the prescription - you can go anywhere to get the specs.

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Hi jamie345, The personal stress should be at the top, it magnifies everything. This pain in your ear, has it been examined separately for the possibility of infection? Are your neck glands swollen? My mother always checked my glands when I got frequent earache. They were up like plover’s eggs.

I know that the jaw pain of GCA can extend to the ear but that doesn’t sound likely. I would imagine it would have been one of the first symptoms to go on 40 mgs. I used to get a dragging pain in my right side, I was examined and told that there was no mass there. I came to the conclusion that it was a Pred thing - it’s harsh on the digestive system. Blurred vision is a known side effect of Pred. I’ve just invested ( I hope) in new prescription eyewear. It will probably change in 6 months, knowing my luck.

That cataract advice worried me too when I got it. At this last comprehensive eye examination I was told that actually I didn’t have cataracts. There is something that happens to the poor aged eye beforehand that I have got that may or may not become a cataract. Great! I’d been depressed about it because my grandma lost her sight due to cataracts in the days before they could deal with it.

Have you sped down from 40 mgs to 15 mgs? I don’t like the sound of feeling so ill on a taper. I don’t think you should suffer if you go slowly and carefully in small amounts. Did you feel ill all the way down or just after say 25 mgs? There is a case for going back up to the last dose you felt well at and then tapering gradually when everything settles down.

As for sounding dramatic, well you don’t, but we love a bit of drama on here, ask mamici.

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My earache is not inside the ear I get it with the neck pain in bed at night , but diagnosed by GP as a symptom, but the whole process of tapering down to 15m from the 40m was awful, I did not know what was the cause as the whole time since they told me my illness and put me on predisinone, they are still trying to decide what is the underlying problem, but I've had this last week for the first time able to walk virtually pain free but not without a walker or stick! Yet! Still can't turn over in bed usual problems as most of us have,

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Not dramatic at all, Jamie, but I’m sorry to hear about the stress you are experiencing- not a good bedfellow at any time let alone alongside PMR/GCA. If there’s any way to offload that, you will feel so much better and your blood pressure likely to settle as well.

It would help to know when you started steroids and how long you remained on the 40mg dose.

I experienced very blurred vision in my early days of treatment - definitely a side effect of the high dose Pred. It will improve as you reduce the dose. Also developed cataracts but now some 6 years after stopping Pred, they are still there but obviously slowed in advancing and am not at the point of needing surgery any time soon. However, if you need further reassurance then do seek an appointment with an ophthalmologist - I’m sure most Specsavers branches are fine but a friend had a totally false diagnosis recently at his branch.

Can you further describe the pain down your left side - for instance is it down the whole of your left side or from the hip down?

If you haven’t already done so, perhaps you should get your ear checked by the GP. Likewise, the neck pain although if it is only overnight, perhaps a simple pillow adjustment might help. I attended a pain management course during my PMR/GCA days where we were shown how to support the neck overnight by pulling the corner of the pillow down to sit snugly under the neck when lying on the side. Difficult to describe long-distance!

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I had my GP look at my ear as it was an early sign although I did not know then and I had it syringed, but was not inside only all around the actual ear. When all began for me last May 17, I had head neck and shoulders pain then seemed to be squeezing my lungs that's when I went to see my nurse and she was the first to diagnose the polymyalgia put on pred/ by my GP but no relief just got worse eventually rheumy diagnosed GC as well, still no pain relief but the pains seemed to travel around the body but the pain in my side it's is literally on my right side just under ribs going round to a partial part of my back I've been leaving my bra off as pressure hurts, to lay or put pressure on this side is very sore, it never goes, I thought maybe kidneys? I just don't know but not nice .

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Jamie, it sounds as though you are in need of some expert investigation to find out exactly what is going on, whether it is inflammation that has never been brought completely under control or whether something else is going on. The symptoms you describe at the start of your illness do sound as though it was GCA from the start rather than ‘just’ PMR. Did you have a chest X-ray at the outset? If not, then do request one now to rule out aneurism - in the case of GCA, that is a recommended procedure to be carried out every 2 years both during the course of GCA and following remission. A scan for that side pain wouldn’t go amiss either, Is costochondritis a possibility although I doubt that would prevail for such a long time? Fibromyalgia is another syndrome to be ruled out. There are so many possibles and that is why you should seek expert advice.

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'we were shown how to support the neck overnight by pulling the corner of the pillow down to sit snugly under the neck when lying on the side' - THAT is EXACTLY what I do !!! (LOL)

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I am not great on where our organs are exactly, but isn’t the gallbladder under the ribs on the right hand side? It is the most appalling pain I have heard. Has anyone done any investigations?

My pain was low down in the intestinal area, so quite different. I have had that awful “PMR hug” pain as I called it, squeezing around my ribs. That was in the early days. It seems to me that although you have experienced some relief from symptoms, your mobility could be a lot better. I can remember the painful 3 point turn in bed only too well. If you do have GCA/PMR you can expect better relief than you are currently experiencing, on the correct dose of Prednisalone. You need to be badgering your doctor.

Marks and Spencer’s do a nice lace bralet with no fastenings, very light but just enough support. You may find that more comfortable than the usual bras.

I hope you feel much better soon. Let us know how you get on.

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I had my gallbladder out yes it is in that area , was very painful , I'm going to seek further investigation after replies from my friends on this forum.

Thank you all

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Jamie345 I too get sore ears . Generally it is the right ear and it is the cartilage/outer ear. I have pmr not gca and my instinct tells me it is related in some way. It comes and goes and is very uncomfortable to lie on. The doctor showed no interest when I mentioned it.

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Interesting - I get pain when lying on the outer ear at times. Not all the time, very intermittent. Can't say I've noticed anything to go with it - but it is rather sore when it happens!

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I agree I'm sure it's a symptom I have to put up with, my doctor not interested either. Thank you for replying

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I have started to get ear problems since the last horrible cold virus I had. I have GCA and PMR and initially thought it was an ear infection but had it checked by GP and it wasn't. It was just the left ear at first but since has been the right ear and on occasions both. I have as well pains up the side of the neck to the ear. I did have steroid nose drops from the GP to ease any ear problems but after consulting my Rheumy we decided to up the steroids a little as I'm sure the ears, pains in the back of the neck plus other small problems were due to the inflammation rising. Are you under a Consultant or just GP? If not improved or gets worse maybe you need to go back and seek further opinion and help.

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I have already mentioned to rheumy but it is intermittent and he did not seem worried about it, at the beginning of this illness it was very active in fact it does still wake me up I will ask the question when I next have an appointment.

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Could be a relative of costochondritis. The outer ear is almost entirely cartilage.

emedicine.medscape.com/arti...

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This started with me a few months before other pmr symptoms developed. It has always been both ears but the right one is worse probably because that would be the side I would tend to lie on. It is extremely painful and certainly disturbs my sleep. If you ever find out what it is please let us know 😀

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