Been having issues with ears, eyes and jaw again for last 6-7 weeks. Have Atypical PMR since Feb 2018. I spoke to a Rheumy last Friday, he was aware of the issues but had reduced me from 18mg to 15mg of Pred instantly at an earlier appointment with further 1mg reductions fortnightly. During our conversation last Friday he said he was concerned I was showing signs of GCA and told me to increase my Pred to 20mg (This was the dose where I was reasonably pain free from PMR symptoms) The symptoms haven't improved, in fact my eyes feel worse, very tired with feelings of pressure behind them. I spoke to him again on Wednesday of this week, he again increased my dose to 30mg. Still no improvement of symptoms, in fact everything seems to have kicked on, shoulders very sore upon waking, constant pain in lower back, hips and thighs. The Rheumy discussed the symptoms I had with a previous incident of scalp tenderness eye and jaw pain at my original appointment on 06/07/18, he said there was no point in doing a biopsy as I had been on Pred since Feb 2018. He then seemed to dismiss any talk of GCA and started me on his reduction plan.
I guess my question is; Are there any other scans/tests that I can either request or indeed look to arrange privately that would confirm if indeed I may have/not GCA?
I cant believe how vulnerable my eyesight is feeling and I'm a bit confused by his actions, surely if he does indeed suspect GCA a higher initial dose should be used?
As ever thank you for reading and any advice gratefully received
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Mike1964
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Yes. Ultrasound. Specif vascular untrasound. Got to ID thr right clinical set up. But untrasound will find the problem - should find the problem ! Others will pile in to advise. Take care - courage -
As they say : 'IF it looks like a duck etc etc'...!!
Hi Mike1964, like Ruadh said, an ultrasound is an option; however, it’s not always accurate. Also, since you’ve been on prednisone, you could have a false negative. All that being said, given your symptoms, I’d look into the possibility of getting it done.
I may be corrected but I believe the ultrasound, which has to be done by specially trained radiographers, is still affected by Pred after a time in the same way the biopsy does.
Have you had your eye pressures checked? Pred can affect this and ability to focus.
I would really want to know the rationale behind the about face in his diagnosis.
Hi SnazzyD My eyes were checked early May, no signs of CGA damage. The original symptoms started at this time; scalp tenderness, jaw pain, low fever, pain in temple areas, eyes feeling very tired with pressure behind them. Most of these then stopped after 2-3 weeks I just assumed I was being an old tart really (As well as being rather told off at the hospital Last 6-8 weeks am having ever increasing issues with ears, feels like full of water, funny sloshing noises. My jaws hurt 24/7, tongue tastes metallic, sometimes burns at tip, roof of mouth also sore but my eyes are again the worst, feel so tired, I just want to keep them closed really. The Rheumy changed his tune when I spoke to him again last week to say the above was getting worse.
Thank you DL, hoping you are feeling more comfortable today? Blimey a trip to A&E, after the last fiasco I suspect they have a photo of me up with a shoot on sight order! Still looking on the bright side, that would sort my aches and pains out. Flipping eck, why is this all so difficult?
Good for you. I have such happy memories of my Grandparents, they did so much for us when we were young. I too did lots of chauffeuring in later life, loved every minute. Sit back, enjoy, and reap your rewards my dear.
All that you describe sounds commensurate with GCA - and whatever the result of either a TAB or ultrasound most doctors would say that you have to treat it as GCA. Personally I think he is being a bit dilatory - either he thinks this is GCA or he doesn't. If it is GCA the dose should be more like 40mg - or more if that doesn't reduce the symptoms.
I don't know you need a private scan or biopsy (cost a fortune if nothing else) - you need a doctor who has the courage of his convictions and will act on them. A good doctor would almost certainly take those symptoms in patient diagnosed with PMR as being due to progression to GCA.
As ever, thank you Pro. It has been left that I will ring him Tuesday to update him. It is all a bit strange really, when he said to go to 30mg on Wednesday it was almost as if he was putting me on 100mg, he even said something like "You can't stay on this" He doesn't seem to realise I don't actually wont to be on 30mg or indeed any mg. I would be very happy to jump into my time machine and go back to that glorious day when I had never heard of PMR or GCA. I had a job i loved, I went out walking along the seafront 5+ times a week for 4 mile walks. I spent weekends cooking (A real passion) taking my beautiful children swimming, for bike rides, walks and picnics. I don't want to be ill!!!!!!!!!!
I really believe I'm being penalized because I went to A&E when my eye, jaw, temple pain first hit in May. The joke is I honestly thought I was doing the responsible thing, Every new Dr I now see questions why I went to A&E. I'm not an attention seeker, I've been to A&E 3 times in my life and to be honest I didn't enjoy any of it.
Wow, where did that lot come from? Sorry for the rant.
I agree with you 100% - we often tell people on the forums to go to A&E: GCA affecting the vision is a medical emergency, exactly the same as a stroke or heart attack. In fact it is the same as a stroke - just it only affects the optic nerve. It also sounds as if this rheumy has never met a patient who has gone blind because of GCA - because if he had he should have a much different attitude. That is what has driven Prof Dasgupta to do all the work he has done for GCA. In fact - there was an article in a newpsaper recently about Prof D having delayed a flight somewhere in order to see a patient with GCA symptoms before he went. THAT is how it should be - not making a patient feel guilty.
No quite agree A&E is not the nicest place to go -many trips with late hubby, and of course my own hiatus, but as overstretched as they may be, and lord knows they are at times, most of us don’t go there just for fun! We go because we are ill, and want some answers that our own doctors can’t give us. And as PMRpro rightly says, GCA should be treated as an emergency!
Pity that’s not widespread, but I have to say my visit was exemplorary. Maybe your previous visit was just a blip!
It came out of that little box inside yourself that you are hiding your frustration , annoyance and stress in to stop yourself from screaming at the next doctor that questions the validity of your symptoms and your actions , knowing that if you tell them the truth about the way you feel you are treated they would treat you as even more of a problem child and it could cause more delays in your diagnosis.
We all have this box, and all walk this tightrope between frustration and fear of loosing their help if we complain or query our treatment .
It guides every word we say in a consultation. It is the real cause of the stress that makes us feel worse.
I keep saying to people, " there is nothing that makes you feel more ill than trying to get better."
Not people at home , of course , there we don't want to tell our loved ones about our frustrations, not wanting to worry them anymore than we feel we do.
But this site is a great place to be able to let stuff like that out of the box, knowing you will have it heard by people who understand and support you. I bet it felt good when you got your feelings down in black and white.
Keep opening that lid, it is the only way you can reduce the stress of dealing with getting to a working treatment , and clear your mind and concentrate on what you need to ask or do, and I bet everyone here is happy to hear it.
And keep going to A and E if you need to, you are only doing what NHS guidelines and advice are telling you to.
Lol, thank you for that Blearyeyed, I did indeed feel better once it was all down. It is indeed true about a problem shared, and I think far more specifically a problem shared with somebody who will understand. Golly, its a mad, bad journey! I thought that was a lovely post, thank you once more. Kind regards, Mike
I went to A&E on a Sunday afternoon in desperation with dreadful headaches... thank goodness this lovely doctor immediately recognised the symptoms, sent me to another hospital to have an eye test where THAT doctor said vaguely that I should visit my gp in the morning!!! I did and was given 30 mgs of pred. A&E rules !!!
I'm nodding with everything said so far so no need to repeat. The dose you are on is not enough if you've got GCA. When I was diagnosed, and it took some time before I was sent to Rheumie, I had a positive ultrasound and was diagnosed there and then, put on 50mg Pred and all symptoms disappeared. It's important to say I had the US before taking the Pred. I had a TAB three days later which came back negative - so Pred doing it's job at the correct dose! Also I am lucky enough to have Professor Dasgupta as my Rheumie. Need some serious discussion with your GP...or a kick up the proverbial if he doesn't listen. Do you think he will listen this time? I'll not say good luck as this is serious and needs someone to take is as such. Best wishes, hope you get on okay.
Thank you Telian. My GP is a no, no sadly, suspect she feels completely out of her depth. Her only concern is to reduce the Pred regardless of symptoms, not helpful. Will be speaking to Rheumy Tuesday morning, certainly no improvement, indeed things just deteriorating, if he doesn’t then take significant action I will ask for an urgent 2nd opinion, really don’t know what else to do.
Lol 😂 Ended up getting a puppy after, taught it was a good idea to get me back walking 🧐🤔🤔 I was doing great was down to 7mg but started to feel fatigue and aches in feet, shoulder etc went back up to 8 mg still struggling a bit took injection today (Actemra) went for two hour stroll with dog just now. I still have aches in neck and strange but on the soles of my feet (mostly right on ).. anyway I see how I m doing tomorrow, if not any better might go up with steroids see will it help.🙏
Morning Lucy, Have you considered plantar faciitis as a cause of the sore soles of your feet? This is quite a common condition, it often gets mentioned on here so is sadly in the general PMR pot somewhere. If you Google it various exercises come up, it normally goes away for a while with these. Sadly mine is also just flaring up again, oh the joys of it all Hope things work out for you.
Was googling last night and that came up 😳🧐 I Also gone up 1mg extra in Pred this morning to see will my aches go away. O yes the joys of it all 🤔🤔 but I remember things could be worst. 🙏hope you get control of your flare.😎 are you going to rise your steroids ?
The Rheumy put me on 60mg on Monday, I'm trying to let my rather confused body deal with the joys of all that. Hopefully in a few days things will sort themselves out (Ever the optimist!)
You must.... sorry you're going through this...can't imagine you're frustration but try to keep calm as it will make you feel worse than you already do..
Hi Mike sorry to read of your frustrations won't bore you with my long story but if you are experiencing symtoms of GCA which to me sounds possible (been there done that) then 60mg is a good starting point you must protect your eyes at all costs. I did not listen to rheumatologist who was not really interested but followed advice on this blog and researched myself. If you can go privately. Good luck going forward.
My Rheumatologist thought I didn’t have typical symptoms of GCA although I had head pains, - unusual for me, tender scalp and temples, sharp inner ear pain with whooshing, stiff neck and double vision. I was sent for a CT scan which came back normal. My double vision, though still have, was ‘corrected’ by having a prism put over one lens of my glasses. Helps a bit.
It’s difficult, because you want an expert opinion, but hope that it’s one that you feel confident with. Obviously a condition that has to be taken seriously and one where you can’t be influenced by other people’s experiences. Just helpful to be aware of them!
Hi Mike I can't get you out of my head. I note that PMRpro is on your case, and is concerned about the treatment that you have received to date. So am I! A lot of sense comes from that source. When you see a black curtain starting to descend over your eyes - it's a bit too late, my friend. I know this. I am still taking preds to try to save the sight on my remaining eye. They are utterly horrid in very many ways - but better than being totally blind, I suggest. I agree with those who cast doubt on the A&E solution. It's a bit of a gamble on who is on duty at the time, and what they know - or don't know - about GCA. You must seek an expert, whatever the cost - and very very soon. If you don't feel well enough - get someone who loves you to sort something out now. Give me a call if you are in the UK. 01483 893567 - so that I can nag you! Today you can see your keyboard - tomorrow - who knows? Get on with it! Arthur (One-Eyed Jack)
You should undoubtedly already be on 60 mg prednisolone NOT 20 or 30 ! - as a precautionary measure, in case it's GCA. I think it is GCA. I understand that it's the standard response. Your symptoms are a carbon copy of mine. I too was misdiagnosed, and it has cost me the sight of one eye - so far. DON'T HANG ABOUT MIKE
Hi Arthur. I'm really sorry, I sent you a reply yesterday to your lovely, very touching message but now cant see it, am now wondering if it posted at all?
I was feeling so lost, not really sure what/who to turn too, your message really tipped me over the edge. After a rather restless night I spoke to the Rheumy again today, he has increased me to 60mg for a week then to discuss further.
I'm so very sorry for what you had to suffer, thank you for your diligence and perseverance to make sure it doesn't happen to others.
Well done Mike. All of my jaw and scalp pain went away within three days of starting 60 mg preds. I believe that this is usual if it's GCA. PMRpro may be able to confirm.
I do worry about your Rheumy. Don't let anyone cut your preds unless you really trust them. I have been five times in hospital with chest infections / pneumonia since I was there losing my right eyesight back last November ( immune system knocked down by preds). Every time, the various medics wanted me to reduce - or even increase my preds. I think that they were treating pneumonia etc., and maybe lost sight of my eyesight problem. Luckily I have a secret weapon - a Dragon Lady Rheumatologist who had given me a pred tapering programme, and warned me that others may wish to mess with it, and on pain of death, I mustn't let them - so I didn't. It caused a bit of disapproval - and a wife smuggling preds in on one occasion - but I had a pat on the back from my Rheumy.
I am being treated under the NHS - but at one point I paid for a private consultancy at a Nuffield hospital (£200) - just to reassure myself that the treatment to save my second eye was as it should be ( I was misdiagnosed at the outset after all). The Professor guy that I was given obtained my records and said that all was well in that regard. I Felt much better - Well worth the money.
I am still having a very bumpy ride with the preds. Others apparently have a better time of it. Better than risking blindness though Mike.
Stay in touch - and listen to PMRpro, Dorset Lady and the others.
Dear Arthur, Just want to say once more how much I appreciate your kindness. Thank you so much for caring, you will never know how much it means. Kindest regards, Mike
Dear Mike, It's a pleasure. I do hope all goes well with you. I gave you my phone number. My email address is arthuraxtell@tiscali.co.uk - in case you want a shoulder to lean on at some point.
Arthur - are you really sure you want your phone no and email out in public view on social media that is available to anyone who wishes to join? It is a lot better to use the private messaging function for that.
Too true, I went straight onto Cambridge Analitica, your details were only worth 5p Arthur which was a bit disappointing, still it all adds up I suppose!
Isn't it a sad reflection on life where you have to stop and think of the consequences before you just reach out to help a fellow suffering human being, truly sad.
Ho-Ho Mike. I am not a Facebook person, but I have had a look, and I cheer myself up with the thought that they swap everything from the colour of their wallpaper to the length of their wotsit on there. Extraordinary! It was kind of PMRpro though. Only 5p? Maybe a colour photo of my poor wotsit would "elevate" things a bit.
More to the point Mike - If you want an example of a pred tapering programme - I will type mine out for you - from the highly respected Dragon Lady. It's just an example.
Coincidentally, a friend of mine believed that he had GCA a few weeks after I contracted it. He turned-down the temporal artery biopsy test that may have confirmed it. Nevertheless, they slapped him on 60 mg preds immediately (just in case), and he is now on the long taper too. He, like me, now has the personality of a damp rag and the physique of a blancmange - But he can see. Is there still time for you to have the temporal artery biopsy test, before the preds demolish the evidence? Give your Rheumy a prod - again! On that topic, I am generally a mellow fellow - but since I have lost one eye, I am a lot more of a forthright fellow when it comes to cross-examining the Medics. I even frighten myself sometimes! You simply have to do it!
Here's a thought: There are only about 3000 cases of GCA in the UK each year (someone told me). There are 41,985 GPs in the UK ( just looked it up, but different websites have different numbers). So the number of cases per Doc per year is about 0.07. So each Doc would only see 7 cases in 100 years - if he was to last that long. I may have messed-up the maths somewhere, but it does make one realise why they fail to recognise it as often as they do.
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Last 6-8 weeks am having ever increasing issues with ears, feels like full of water, funny sloshing noises. My jaws hurt 24/7, tongue tastes metallic, sometimes burns at tip, roof of mouth also sore but my eyes are again the worst, feel so tired, I just want to keep them closed really. The Rheumy changed his tune when I spoke to him again last week to say the above was getting worse.
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