On this page, top right hand corner, Pinned Posts. NEW GCA Guidelines 2020, read them.
Inflammation markers are not, repeat not the criterion for diagnosing GCA some people's ESR and CRP 'markers' are never raised. BTW , neither is the Temporal Biopsy, which can come back as negative.
Medical symptoms over rule everytime. One sided headache, jaw claudication (difficulty in chewing), deafness, etc, all listed in those guidelines.
Was it a Consultant Rheumatologist who told you or?
If at anytime you get blurred vision, infrequent times when vision disappears, off to A&E and ask for the Consultant in Charge of A&E.
In the meantime you need to talk to your GP like yesterday and do not be fobbed off by the receptionist.
Please remember there is not always a bad headache. I did not suffer with that but my scalp was so tender. I had a GCA relapse last December and, fortunately, I discovered this at an early stage by noticing that my arteries above my ears were enlarged. My rheumatologist called me in the very next day and confirmed my suspicions with an ultra sound.
In August 2018, when I was first diagnosed, three doctors had told me I did not have GCA because I did not have a bad headache. They were all wrong.
We will all understand what feelings you are going through , especially those of us who had delays in our diagnosis or more have complex problems that require more investigations before we get the answers we need.
While the symptoms are not properly under control and you are still waiting for answers the best thing you can do for yourself Mentally and Physically is to talk to others , on the forum or in your circle , seek help to doing practical things and , do as you have been , and take sick leave from work. Then you job is to give yourself as much TLC as possible , rest , try to stay calm and positive , and don't feel guilty about leaving domestic or work chores until you are physically able to do it again.
Keep a Diary of your symptoms , both Physical and Mental , and your Pain , including when they are worse , or if anything makes them feel a bit better. This Diary will be valuable information for all of your Doctor's to try to diagnose what is happening.
We all feel scared by the unknown . The positives are that the Doctors usually rule out the things you are most worried about with your intial blood tests or any scans you may have had already.
It's possible that they are still inconclusive about GCA , and that your response to reducing Steroids may make them think again , especially after your other tests have been done.
You can get rather nasty symptoms from Tapering down your steroid dose , particularly if you were on a high dose for GCA and are being told to reduce it quickly.
Your can have withdrawal but it should improve over the week , but you can also have a Rebound of old symptoms. If you feel that everything is getting worse despite extra rest , Paracetamol , fluids and general care call your GP and ask to see them immediately.
One reassurance is that as you are on current Steroids and have not reduced below 25 mg that your eye sight will be more protected.
Take care , keep in contact with us , and go back to your GP at any point you need support.
" Latest clinic appointment indicates inflammation markers not high enough for a diagnosis of Cga"
Up to 1 in 5 patients has GCA (and PMR) with markers that are within normal range.
But whatever it is you have - you have something, And someone needs to listen - beyond the CT and the renal referral. Neither of them affect your lungs.
Knowing that inflammation markers can be in normal range with PMR was a great help to me, since two rheumies cut my Prednisone way down because mine “weren’t that elevated.” My GPwas the one who looked at symptoms for dosage. But do we know why inflammation markers stay low with some PMR patients, even though we’re in crippling pain.
All I have ever been able to find is that "Some people do not mount the acute phase response that leads to the raised markers." In some cases it is there but the patient's normal level is very low single figures which have risen to upper teens - elevated for them but not in the stratosphere that it appears they expect. There is such a lot we don't know - and that is something too many doctors either don't know or won't admit. Which is greatly to the detriment of the patient.
I have been seen by a rheumatology clinic and it's been a rollercoaster of I have gca I don't have gca.
Mainly because my inflammatory markers are not what they expect to see. After my first appointment the leaflet they gave me with symptoms ect showed I had them all.
I had a biopsy which came back negative but I had been on prednisone for 2 weeks
So what you would expect.
I have tapered before down to 20mg which brought back all my symptoms.
Back upto 30mg where Ive been for a while I've had an ophthalmology appointment which showed some eye changes age related. But different from the gca type symptoms.
This was enough for the dr at the clinic to send me back to my gp.
No real plan for tapering apart from drop to 25mg just over a week ago
I ve stayed with 25mg this week to see if some of these symptoms will settle.
This is the part I don't understand about this disease. Inflammation is what causes the pain when PMR has been diagnosed, so surely once the Pred is used why doesn't the inflammation go away and the pain too.
It will only do so if the dose is high enough in the first place and you take that for long enough. There is some pain that is not directly due to PMR, longstanding bursitis will often take some months to resolve on oral pred, local injections are far more effective there. But if there isn't a global improvement in excess of 70% within a couple of weeks after trying a higher dose then there must be serious doubts as to whether you have the PMR we talk about here. There is a range of causes of the symptoms we call PMR - in our case it is an unidentifed couse of an autoimmune vasculitis that is pred-responsive. Not all the causes fulfil that criterion.
Not everyone is entirely pain-free - but there should be a definite improvement. I've been lucky, apart from flares I am near enough pain-free and have been since a few months post starting pred once the bursitis had resolved. It returns intermittently - and responds quickly to a local steroid injection.
It's frustrating, I know. Autoimmune diseases can be very difficult to diagnose in the early stages.
But if you don't have a diagnosis, what are they treating you for? What's the plan? What's the next step besides minimizing the only treatment that's been helping you?
Perhaps if you let is know where you live, someone can recommend a doctor for you. Even if you have to go private, it may be worth it to at least get a diagnosis.
I live in between maidstone and t wells. Any help with a consultant would be gratefully recieved . When you go to the clinic you see a dr who goes to speak to a consultant . But I've not seen one face to face yet 🤷♂️
Put a post up asking for a recommendation - Kent is the end when it comes to rheumies, I know, has been for years. Could you travel? Have a single private consultation?
Had I meant a specific hospital I'd have said so. It is merely experiences had by several members of the communities over the last 10 years have not been encouraging in the care of PMR and GCA - unable even to diagnose them for a start.
Mr Saha is my consultant who is at Maidstone hospital. Really nice young man and so helpful. I saw him at Kim's in Bearsted privately, where thorough tests were done. I was diagnosed in Dec 2019. He started me on 15 mg of Prednisone, but due to lack of sleep after 16 nights he reduced to 10 mg which I stayed on for a further 21 days. Then he told me to taper by 1 mg per month, which I started to do beginning of Feb. I do get a little achy on some days but it does go off. I'm hoping beyond hope that I manage to continue to taper without any real pain returning....but not holding my breath after reading so many posts on the forum.
Sorry to keep repeating myself but I had to end up going private and self funding (no health insurance) I was being treated for Osteoarthritis, but knew it was more than that. Thank goodness I did as I'd probably I'd still be waiting to see a Rheumatologist on the NHS. If I have any worries I ask for my rheumatologist to call me and he puts my mind at rest. I will now get a referral to see him on the NHS for future concerns.
Definitely put up a post asking for recommendations - there are some good people in the SE who do private work and would add you to their NHS lists if they thought it was reasonable. One lady from Kent got the right diagnosis by getting an NHS referral to Leeds! Bit extreme maybe but the doctor doesn't do private but she did get it right! I'd choose Chertsey - but possibly a bit more complicated for you.
As I've mentioned above Rheumatologist in Maidstone hospital, so not need to go up to London. You'll obviously need a referral letter from your doctor to see someone of your choice....but again I recommend Mr Saha.
I was in remission for 9 yrs.Had a flare in Feb.2019 but because my esr was normal he said i had rheumatoid arthritis.Come back in 3 months.When i got my blood tests back i didn t have arthritis.So i called back cause i knew its was pmr.Its an illness you never forget.Went back on prednisone and i feel much better.Sometimes reumys are wrong.
I can recommend my consultant rheumatologist Dr Pamela Mangat. I see her at the Royal Free Hospital which is the wrong side of London for you, but she also does private clinics in central London.
Hoobabes you mentioned muscle spasms and cramps. I too suffered that and I think they were caused by poor circulation. I have PMR and am now on 10 mg of prednisone. My inflammation seems to be well controlled and I haven’t had any cramps in a few weeks. Based on your scalp tenderness and jaw/neck pain it certainly sounds like you have GCA. This is a very helpful forum.
These cramps ect seem to be linked to the diagnosis/prednisone. When I reduced to 20mg previous. They were off the scale as was my head pain jaw ache ect .
I did see a dr at that time and she could see what I was experiencing. But in usual fashion I've not seen her since. Fyi my potassium was elevated at that time too and I was asked to stop eating bananas.
My levels are back normal but I'm not eating bananas at the min.
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