Hi. I'm new. I've recently developed the classic symptoms of PMR, but only after decades of struggling with eczema, asthma, sinusitis, allergies and steadily worsening, widespread, undiagnosed pain and fatigue (the whole sorry saga is in my profile). PMRpro and DadCue have kindly suggested I look into vasculitis.
After tapering off prednisolone, my symptoms are raging again, but my ESR and CRP are normal. I'm due repeat tests soon. What tests should I expect for suspected vasculitis? Any suggestions would be appreciated.
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AtopicGuy
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Since your Condition has, very clearly, Not been Fully Diagnosed then, I might suggest, that a Considerable Number of 'Tests' might need to be performed. If, for example, you had said 'I have ANCA negative Vasculitis, with Heart & Liver Complications' then I could perhaps have advised you.
The majority, of the Tests- certainly in the First Instance- will be on your Blood and Urine... though you Might, be asked, for a 'Stool (poo)' Sample perhaps. The 'Scan' Tests, may well follow. Only then will any 'Invasive' Tests be carried out- looking Within your body.
By this time however, your Doctors/ Consultants (and you yourself) will have a MUCH 'Better' idea of your Condition- and it's Diagnosis.
Please, try at least, Not to worry... You WILL be 'Fine' AtopicGuy- Without being, in any way, 'Funny' with you, WE have ALL 'Been There'. We All recognise your Fears, Confusion, Apprehension AND Just How Baffling this ALL is. Until a few Weeks/ Months ago you were a 'Normal' person.... with 'Nothing' more than the Household Bills to worry about..... I know that, we all do. (How 'Trivial' some of it all seems now....)
Feel 'Free' to contact, any of us, again- should you want/ need to. Please DON'T Worry about being a 'Nuisance', This IS What We Are Here For AtopicGuy.
I seem to be stuck in a catch 22. The rheumatologist won't see me unless my bloods reveal a problem and my GP won't do anything other than basic ESR and CRP.
I can only suggest One Way Out, of your 'predicament', and it's probably NOT one that you would normally employ... but it Might Work.
You need to be 'Sad' no, more than that, 'Overwhelmed' by this ALL.... so much so that you are IN TEARS.... you just can't Cope, you Really Do Need HELP.... (this is often 'done' by the Girls, far better than us, but) YOU CAN DO THIS.
Appeal to Your Doctors 'Caring Side' (and hope to God (s)he's got one!) Your REALLY 'Unsure' and you are Just Being Given The Run Around.... can (s)he PLEASE 'Help'. Could (s)he not JUST Have Some Test Done- For Your Own Peace Of Mind- Please? (how Good are you at 'Puppy' eyes?)
If, and it IS a 'big' If, the Doctor gives you an Explanation- of any sort- DO Listen. My 'Bet', will be that, by now feeling 'A Bit Guilty And Sorry, For you', Your Doctor Will Send you for ALL the Tests.
I'm ahead of you there! My GP is very aware of how low this is dragging me. I have long suspected (and since the PMR appeared, am now convinced) that my history of anxiety and depression developed from the struggle of keeping going while feeling unwell every day (see my profile). I succeeded in the sense that I have stayed in employment and off benefits. But now I am contemplating spending my pension lump sum on a private rheumatologist, simply because the Scottish NHS seems uninterested in pursuing any disease with a difficult "presentation". I know two people who are in a similar position, one my age and the other only in her twenties.
No. I've never been referred to a rheumatologist, despite my atopic immune system suggesting an auto-immune problem might be the most likely cause of my long term symptoms. It looks like ANCA is a key test.
ANCA is not necessarily conclusive, but it is a good a indicative test. Your GP can request it, so it's worth asking (especially if they are doing other tests anyway).
Yes ANCA is one blood test they could do but it only applies the the ANCA associated vasculitis and is only an indicator. Personally my CRP is only raised when I have an infection and my ESR is slightly raised so again not helpful. As AndrewT has said they should check your urine. They should also be checking your kidney and liver function and a whole host of other things. If I was you I would be insisting on a referral to a rheumatologist. You would need one that specialises in autoimmune diseases. A call to the vasculitis helpline should help there if you can’t find one. I know this is not easy, especially in the current situation but if you do have vasculitis you need to start some treatment as soon as possible.
What should my urine be tested for? Traces of blood? I had that 10 years ago and despite an ultrasound, x-ray and cystoscopy, they never got to the bottom of it. They did find some sort of minor congenital kidney abnormality but then dismissed it. I intend to ask about that as PMRpro and DadCue have suggested adrenal insufficiency and vasculitis might underlie my long term symptoms. I will call the helpline. I've already decided to stop work this summer and, as things stand, I'm not even well enough to take a holiday. I'm surviving, not living.
Yes they test the urine for traces of blood amongst other things and it is tested every time you visit clinic. I think the usual way of finding out if your kidneys are affected by vasculitis would be a kidney biopsy that is how I was eventually diagnosed. I was at a support meeting where the rheumatologist suggested that PMR can develop into vasculitis so they could be right. PMRpro is very knowledgeable and I would certainly listen to what she is telling you. I’m sorry to hear you are so poorly but if you are at this stage you are definitely overdue to see a specialist. If you do have vasculitis and you get treatment you can look forward to a better quality of life. If it’s not vasculitis it needs to be investigated in any case. I’m sure the helpline can give you some tips on how and who to get referred to.
I've already told my GP that, since we know it responds to prednisolone, I rather go on that long term, despite all the implications, than hold out much longer for a diagnosis. I'd rather expire on steroids in fives years than struggle on for thirty like this.
That’s your choice if you are well on steroids there’s no problem. I’m not sure why you think you are going to be stable on steroids until you expire in five years.
It's been drummed into me by doctors, the whole of my atopic life, that topical steroids - ointments, inhalers and nasal sprays - are okay, but taking oral steroids for a chronic disease is a drastic step, because of their side effects: diabetes, weight gain, skin thinning, etc. Then there's the fact they lower immunity to infectious diseases.
Your urine should be tested for blood and protein. You should have a kidney function blood assay, which will include amongst other things a test for creatinine.
The level of creatinine yields a value for how well your kidneys are functioning: eGFR (estimated glomerular filtration rate). If there is a problem then a biopsy would show the nature and extent of any kidney abnormality.
Hi everyone. It's been three months, so here's an update. I rang the Vasculitis UK Helpline and had a long, wonderfully productive chat with the Chairman, John Mills. Sadly, despite my GP's best efforts to refer me, non of the rheumatologists JM recommended in Scotland would see me, but I did, finally, get to see the one for this region. He listened carefully to my whole history and the long list of chronic, sub-acute or sporadic symptoms I've struggled with. I explained how the slowly worsening fatigue had affected my home, work and social life for decades; and how the tell-tale PMR symptoms were the first signal of a possible cause. He physically examined me to prove I really don't have any arthritis or mechanical injuries that would explain the pain and stiffness I feel every day. He noted my eosinophil levels are mildly raised (as you'd expect for atopy), my inflammatory markers low and my chest X-ray is normal. I have a trace of blood in my urine, as usual, but no protein. He agreed to have ANCA tests done and these came back normal. His conclusions were: a) he cannot diagnose PMR because my symptoms came on steadily before the age of 50 and b) he can't diagnose any form of vasculitis without more hard evidence (such as organ failure, I suggested).
I can't hang on any longer and so have given up pursuing a diagnosis. My GP prescribed 20mg of prednisolone last week. After 2 days the fatigue eased noticeably and after 4 days the morning stiffness and pain (including headaches) eased a bit, too. I can now raise my upper arms 30 degrees above horizontal, though it's still exhausting to try. Without going mad, I'm already more active than I've been for months. The only side effect, so far, is light agitation. Last time I tried steroids, this eased along with my symptoms after a couple of weeks. Early days, but I feel much less debilitated. Off for a snooze, now. Thanks for your help and support.
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