Happy to be diagnosed.
Posted , 8 users are following.
I was diagnosed with Polymyalgia and GCA almost by accident. I had a chest infection and a week of antibiotics but four days after finishing them I went back to the GP with a sore throat, swollen eyelids and a swollen ear canal. In the discussion on swelling I just happened to mention that I had a swollen ‘vein’ on the side of my head. To cut a long story short; 10 hours in A&E, rheumatologist appointment within the week, immediate start on 60mg prednisolone per day and today I go for a biopsy.
When I look back I realise that I have been in trouble for some time. I have osteoarthritis but my osteoarthritis didn’t seem like everyone else's. I had pains everywhere for about two years, fatigue, sweating, shooting pains, sore areas etc. It seemed to come on very suddenly after going on a short walk and realising I was having trouble walking back. It was downhill from there and I put it down to, rightly or wrongly, starting statins. I was in such a mess that I told my GP I never wanted statins again.
Because I have multiple health problems It was very difficult for anyone to diagnose the problem but looking back I see that signs had been evident for some time but no one, including me, had put two and two together. Because of my health problems I have kept notes over the years, and looking back over this last two years there are multiple comments such as ‘pain in front of ears’, ‘headache on lhs’, ‘I think one of my veins is swollen’, ‘can’t sleep on that side’ etc. I seemed to be on a downward spiral of pain.
Fortunately I have a very good GP who always takes me seriously and tries her best to find solutions, even writing to my consultants to see if they could throw any light on anything.
So here I am, I’m not looking forward to the biopsy but I feel strangely happy that at last I have a diagnosis and if all works out well I can look forward to better health.
The steroids have been great, not a joy to take but the swelling was gone within 48 hours as was the stiffness and a lot of the pain. I have been on high steroids before for another reason so I know it is no picnic coming off them but I managed it and I will again.
0 likes, 19 replies
Devonmichael Lizfor
Posted
Good luck with your recovery!
Lizfor Devonmichael
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Thank you for your good wishes. I too was very concerned about sight loss as it was the first time I had heard of it in A&E.
MrsO-UK_Surrey Lizfor
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Lizfor, so sorry to read about your diagnosis but at the same time so pleased to hear that you have such an on-the-ball GP who has diagnosed you and promptly started you on the correct treatment.
Don't be surprised if the biopsy reveals nothing - it is quite possible to have a negative result but still have GCA affecting the temporal artery, and the immediate resolution of the swelling and reduction in pain and stiffness following the first steroid doses can be taken as confirmation of the diagnosis.
Good luck with the biopsy and your continuing improvement - your very positive sounding nature bodes well. Just to add a little boost, I am one of many who came through both PMR and GCA, with both going into remission over 4 years ago now.
Lizfor MrsO-UK_Surrey
Posted
Just got back from the hospital after the biopsy. Not anything like the ordeal I expected. Very switched on and professional doctor, explained everything as he went along, with just enough chit-chat to provide a distraction. So far no pain apart from the initial prick from the anesthetic going in and that was a lot less than at the dentist. He did say the biopsy might reveal nothing which is somewhat confusing. I am pleased to hear of your experience of going into remission.
EileenH Lizfor
Posted
The giant cells they are looking for don't always appear: they aren't evenly spread through the arteries, they may not even BE present in the temporal artery, although if it was swollen and painful you would expect to see something, not necessarily giant cells though. The bigger the piece they took the more likely but even then there are what are called "skip lesions" so there are areas that don't have them, and if they look at the wrong slides - no cells! The surgeon has to be good and so does the pathologist - they aren't always. And if you have been on pred beforehand - they may have disappeared in the meantime.
So a positive biopsy is 100% certain that it is GCA. A negative one only means they didn't find what they were looking for - so they will go on the symptoms. And probably your response to pred.
EileenH Lizfor
Posted
Good for your on-the-ball doctors - it makes a pleasant change to know it can work right at least sometimes!
In some ways the getting off pred with GCA is perhaps easier - the slow-down is due to the illness you need them for being still there rather than the problems of getting off long-term steroids. Because - just in case your doctors never mention it, pred doesn't CURE anything, it just manages your symptoms until the actual cause of the symptoms burns out and goes into remission. The positive thing is that, although it is an autoimmune disorder, unlike most of them it does for most people burn out and go away. In some ways, GCA is easier to be rid of than PMR.
Good luck - and looking forward to hearing more of your adventures.
Here's a link to our useful reading and sources of information thread:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Lizfor EileenH
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Lizfor
Posted
Prednisilone Problem
12 days on from starting 60mg of prednisilone I seem to be having problems. I was fine until yesterday morning and then the soles of my feet began to ‘burn’. They kept me awake most of last night. The next morning after getting up I realised I wasn't feeling well as I moved around so I took my blood pressure. The night before it had been 123/63 p67, perfect, but this morning it was157/74 p74 when sitting down but, 96/54 p99 when stood up. I was so surprised I took it again, 141/91 p111 sitting, 95/58p103 standing. It was all over the place for most of the morning.
I have stage 3 CKD so I began to wonder if the prednisolone had upset my salts, I seem to have been passing urine all night. So I took a Dioralyte, some apricots, 6 squares of chocolate and a banana. So far things have improved during the day. I was a bit worried that I may have got the wrong end of the stick and perhaps my salts were higher and not lower than they should be. I did contemplate ringing 111 for information but couldn’t face the thought of their flow-chart questionnaires.
I see my rheumatologist next Friday so I would like to hold out until then. Has anyone else had these problems?
jae61606 Lizfor
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EileenH Lizfor
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However - check your BP a few more times before going to the doctor because that is something that happens in postural hypotension. It may need keeping an eye on. But I doubt your rheumy will be much use! And if your salts are out of balance - an earlier blood test to check would be better than waiting until after next weekend - which is what it will mean.
Lizfor EileenH
Posted
I had an ablation for AF last year, one of the best things I ever did, it was haunting my life and so unpredictable. Now I have it very rarely and when it does happen it is a lot intense.
I an continuing to take my blood pressure and I think you may be right about the medication as it was after I took mine that the drops occured. If I have the same trouble today I shall go to the GP in the morning and see what they can sort out.
Thank you for your input. It's early days yet, but yesterday, for the first time in about three years I was able to sit on the floor and get up unaided. A million miles away from what was achievable before.
EileenH Lizfor
Posted
Here in northern Italy they like to keep ablation for as late as possible and use medication - whihc for me has worked perfectly well so far. I just get the odd episode late at night usually, never during the day, they last a few minutes and are barely noticeable. But they had been a bit worse and I'd upped one tablet and had reduced another. It worked far better once I changed the time at which I took the half tablet - and the BP problems subsided.
Lizfor EileenH
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All that Italian sunshine! I'm in the UK. I had the ablation because I was always having to go to A&E. I have had problems since a teenager and now 70 it is just a relief to have it mostly under control. There was just one little bit they couldn't reach without another procedure but it bothers me rarely. A big day in Italy today - good luck with the election.
EileenH Lizfor
Posted
Not sure which is the worse prospect, the Italians saying no and Renzi (who is the soul of sense compared to most) going or the Austrians voting the right wing bloke in as president! Everyone we know in Austria has been apologising and insisting it isn't them! The 5* leader here is an absolute comedian - he has even less clue than Trump or Berlusconi!
But if he wants to leave the euro that also has to go to a referendum - and 67% of Italians realise they need the Euro.
I can't imagine having had a/f for that long - was it treated at all beforehand? When they realised that mine was not just a drug reaction I wasn't allowed out of hospital until I was stable on warfarin. But that went haywire last spring and eventually I was put on one of the new generation anticoagulants - saves the blood tests every month.
Lizfor EileenH
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As a teenager Not much was done about it, it tended to be transitory and short and I just lived with it. As I got older I saw consultants who told me that I could control it with drugs, but wasn't offered an ablation, I think it was Atenolol. I didn't have blood thinners possibly because after years of treatment for another blood condition my platelets just scrape into the bottom end of normal or below. About 10 years ago I was told that there was this thing called an Ablation which was now perfected and that was a possibility. We moved counties three years ago and the people down here were much more switched on and offered me the ablation (probably got fed up of seeing me in A&E where they used drugs to stop it). Once again, a very good team, very professional and very informative. I got my full after procedure report and it was very detailed. Apart from a 'settling down' period I didn't have any problems. I take 2.5mg Bisoprolol a day and I'm fine.
Politically we are living in interesting times. Tomorrow our Brexit high court case starts. I am very interested in politics so shall follow it with interest.
EileenH Lizfor
Posted
But if people think the NHS is overrun now by young and healthy immigrants - what will happen when all the UK pensioners who can no longer afford to live on their devalued pensions now they are without any healthcare from the UK have to return to the UK? They will be using the NHS again but no longer contributing as pensioners... You never hear that mentioned though.