Hi everyone hope things are going well? 8wks ago I was seen by GCA specialist who said she would see me again in 4wks and I was to start reducing the pred from that week. I thought great I can ask any question I like b4 reducing. However the clinic I was full and I can't be seen til not week (5wks later than planned)) My local doc said just go ahead and reduce ( 40mgs, 5 each wk til 20 etc) even tho I was symptomatic (extreme stiffness and discomfort in temple even with soft food). I got down to 30mgs but felt rough and my feet, ankles and leg up to knee started swelling and became full of fluid (pitting oedema) I became very breathless enough for all my friends to notice and my legs became painful to walk but pain free when I stop (intermitant claudication?) my doc said could be heart or lungs let's run some tests. By the way the swelling didn't really reduce overnight. The lung function test was fine so as soon as I heard that I thought it must be my heart upset so I wacked the drugs back up to 40 then adding 5 extra a night to get on top of the swelling. 10 days on virtually no swelling (just a littl on left foot) and no breathleness, temple stiffness gone just pressure both sides. My left leg pain has reduced a lot too. Is there any other way the heart could be affected apart from it forming in the aorta and reducing the blood supply to the heart? About 5 days before reducing I got a sudden pain in my jaw whic moved down my chin to chest and thru to my back, it was very painful for about 10mns. Doc didn't think it was angina. Don't think the hospital will be happy and the specialist said if I had a flare up they woul put me on methotrexate ( which I don't want) their regime has me off pred in just over a year. I started with pmr in March. Thanks for listening and I hope you wake up to a fabulous day. Ps what would all of you lot done?
GCA in the aorta?: Hi everyone hope things are... - PMRGCAuk
GCA in the aorta?
Hi carrollee. I also have GCA in Aorta but don't have the symptoms you have like temple pain and swelling in legs and feet. But I have developed very high blood pressure and high pulse rate. GP suspects something going on with my heart. I have had an ECG which was inconclusive and this morning I am being fitted with a 24 hour ECG monitor to see what is going on over a longer period of time. I have tapered down to 10mg on Pred and as the GP thinks that these problems are due to Pred not GCA I do not want to increase the Pred. i asked how they could be sure and she said because my CRP has not gone up so inflammation is low. I started on Pred in January at 40mg and my planned taper will take about another year. Like you, Rheumy said if I flare we should consider MTX which I hated the thought of at first but now I would welcome it as a steroid sparing treatment. I seem to have every side effect possible with the Pred. Keep me posted on how you get on. X
Caro12line
Your GP is not clued up on Giant Cell Arteritis it is a member of the Vasculitis Group and can and does affect the Aorta and Pulmonary Artery and other vessels.
It is good they have done an echocardiogram, I assume on both the Aorta and Pulmonary arteries, as this should be done after two years with GCA, as showen in the BSR guidelines.
Your Rheumy should know better, the ESR and CRP are guidelines to 'something going on'. Clinical symptoms are what they should be going on, as some people's ESR and CRP are never ever raised and they have PMR and
or GCA.
One thing, I bet you do not have the 83 recorded side effects of Pred, nobody gets them all, but..........................
PS Remember you can always ask to see a Vasculitis Consultant if necessary.
Thanks Sambucca. The ECG I had took about 1 minute. Just a snap shot. Don't know what type it was. Today I have fitted a 24 hour monitor it is in the middle of my chest and for some obscure reason at the back of my neck? I go back to see the GP on Wednesday and my Rheumy on Thursday. My Rhemy is Prof Dasgupta. So I think I am in safe hands and I will discuss this with him. The nurse said today that the results of the ECG take about 3 weeks so they won't be ready but i did ask the GP if she was sure the heart issue wasn't a GCA flare as it seemed the most obvious to me with the Aorta. Thanks again for your feedback.
It took 45 minutes for my ECG and both the Aorta and Pulmonary were done. So you have not been ordered the correct ECG. I got the result immediately from the technician who went the extra mile for me.
Results of an echo should not take three weeks, if there was something awry, they would be expedited.
Sent you a PM/
Thanks. I thought that to... Problems started at the beginning of July, palpitations, chest tightness etc. I thought it odd that if it is a heart problem that it would have been investigated quickly. Because things have moved slowly this has also made me a bit anxious which probably is not doing the heart any good! A catch 22. I tried to tell myself that if the GP is not that worried then I should not be either.
I too have GCA and vssculitis in or around the aorta. Not sure exactly but the pet scan looked pretty scary. I was diagnosed in jan 15,and have been on 60 led now down to 20. I saw gp recently as I have been very breathless and get a pain in chest. I asked if it was vasculitis and he didn't really answer me. He thinks it's more like angina. Have had an echo but no results yet he gave me a spray to go under my tongue and a water tablet as he could see how blotted I was. Got to see him in 2 weeks and depending on results he will refer me to cardiologist. Does this ever end? I hope you get your results soon.keep in touch xx
GCA is part of the Vasculitis group of illnesses, it is the largest group in that range.
You both need to read up the Diagnosis and Treatments Guidelines, issued by the British Society of Rheumatologists, they can be found on the BSR website, the NHS website, Patient.co.uk, PMRGCAuk who run this thread, PMR&GCAuk North East Support and also PMR Scotland.
I have also tried to answer both individually.
Carrollee
When where you diagnosed with GCA?
When diagnosed I was started on 60mg per day and it took me 7 months to get down to 20mg.
I was pleased to read you had the sense to protect yourself by upping your dose of pred.
There is now way they can get you off pred within a year, I have yet to meet anyone who has had or has GCA and it has gone into remissision within a year.
I would really read up on the links I have given you below and visit the websites of the three charities.
The ESR and CRP rates are just guidelines to something going on, some people never, ever have raised markers at all, the rule is you go by the clinical symptoms.
Methotextrate is just a steroid sparing agent and the jury is out as to whether it works or not with PMR and GCA. It is brilliant for Late Onset Rheumatoid Arthiritis (LORA).
I would either:
download the guidelines and take them to both medics
or
change both GP and Consultant, they obviously know little or nothing about GCA.
sambucca, we've had some recent correspondence on a separate subject but I've been catching up on posts tonight and your 5th para. set me thinking. Please don't feel obliged to reply to me - I suppose I'm just sharing thoughts.
I had all the symptoms of GCA approx. 10 years ago - right side headache, particularly in the morning, extending down to my right shoulder, fatigue building into total debility etc. Blood 'deranged' according to my GP when I asked if it could be the mysterious ME, which shows nothing in the blood. Was sent to Oncology who, along with my GP, were convinced I had cancer of some sort. All tests proved negative and after four or five months I began to feel better. I can't remember the exact timing but six or seven months later I was back to normal and walking on air.
When it struck again nearly five years ago, I went through exactly the same process, with the same GP & Oncologist. My GP said she had had only one patient previously who she'd been unable to diagnose ( a bit older than me she thought!) and who had eventually reverted to normal health, with no medical intervention. "That sounds like me", I said and, sure enough, at my next appt. she confirmed it was.
It was the Oncologist who suggested, in the end, that it might be GCA and I was put on 40mgs of Pred. straightaway, which was like a magic potion. Nevertheless, I have wondered recently, when I just can't shake it off, if I should have persevered, wretched though I felt, knowing my history. I realise there is the devastating sight loss problem but, with a nil diagnosis over months followed by a 3.5 months' non-diagnosis second time around, I feel it was unlikely to happen to me.
All this is leading up to the question (to myself) would I have been better off allowing my body to fight its own battle once again?
Has anyone else on here had a similar experience?
Best wishes to everyone going through these horrible conditions.
Carollee, what rotten luck to have the rheumy appointment postponed, especially after a recent diagnosis of GCA.
Certainly, your GP's advice to reduce by 5mg each week down to 20, without even monitoring you in between, proves that he is not too familiar with GCA!
Any medic, especially a rheumatologist, who says that you will be off Pred in just over a year is proving his ignorance to the condition. I was told two years........it took more than 5 years, with the goalposts being moved at each appointment!
Everyone diagnosed with GCA should have a chest X-ray at the outset and repeat X-rays every two years for the rest of their lives to rule out aortic aneurism.
You ask what we would have done? When experiencing your symptoms, I would probably have presented myself at A&E. You might even have seen a rheumatologist with a bit more knowledge on the spot. If it was me, I would be asking for referral for a second opinion.
Hi Carrollee
Sorry to hear about the problems you are having. You spoke about a pain in you has going down to your chest. I get a very bad pain in my back going up my neck to my ears and across my chest which could last up to 3/4 of an hour, the pain was so bad I just held my chest and walked up and down, I must say it did feel like bad indigestion and made myself a hot drink after which I did pass wind and burp heavy. I had this a few times then went to the doctor he said the press could cause this and suggested I took gaviscon after every meal and at bedtime to start with and I must say it has done the job, so far anyway, as this is fairly new I am still monitoring it.
I hope you get things resolved sooner rather than later.
Sue
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