I have been trying to get a diagnosis for unexplained pain for many years. Have seen a rheumatologist and am awaiting follow up. My blood tests results were negative for esr and c reactive protein but I have noticed that I am getting increasing pain in my blood vessels - arms legs and temples, Does anyone else with any type of vasculitis ever have negative blood test results for inflammatory markers? My gp wanted to treat my condition without going through the expense of investigating it due to the lack of these markers and I am worried that although I am now seeing a consultant I wont be any better off. My concern is that I am sleepwalking (painfully) into something more serious so I would be interested to hear of your situations.
Thank you
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braincurdle
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In both polymyalgia rheumatica and giant cell arteritis "normal" blood levels are found for both ESR and CRP in about a sixth of patients. When I say "normal", for ESR for example I mean a result under 35 which is within the normal range for the general population, the range is 0 to 35. Mine is and always has been (however ill I was) between 4 and 7 - for me a figure of 40 would be 10 times "my" normal, for someone else it would be their "normal"..
It is not known why but some people never develop this "acute phase reactant". They are not gospel - in PMR and GCA it is the symptoms, the clinical picture which should be taken for the diagnosis. These blood results might be the icing on the cake for the diagnosis - but they are non-specific, especially the ESR - and that can shoot up with a urinary tract infection or a viral infection. Or it might stay obstinately low.
You mention typically PMR symptoms with the arm pain - and a GCA symptom with the temple pain. Is that what your GP thinks? Does he want to trial prednisolone? If the symptoms respond dramatically to pred (within 24-48 hours or even less) it is more a confirmation of his diagnosis than the ESR and CRP are.
Hi PMRpro, your post is very interesting. Because my siblings both have auto immune disorders my gps (various) do initially expect me to have one as well but lose interest in this when my esr and crp are 'normal'. Also I have been having the problem since my early thirties and although I have only seen gps about it in the last ten years, they are generally baffled when they realise I have been walking around with this problem for over fifteen years and I think some conditions are ruled out as inappropriate on the basis that I would have been too young in the beginning. To be fair in many ways it started as a minor annoyance that waxed and waned but over the last year has become very painful, but even so i'll have a few bad weeks and then a few good days or more and then the pain will reappear sometimes in the same area and some times other areas. They find this strange as well, but I do not as my sister's rheumatoid arthritis diagnosis was delayed as it was always on the move. At one point my gp told me it was too expensive to investigate it and they would just treat me for osteo-arthritis. I spent four months on drugs for the condition and went back to say they didn't help and I was advised that blood tests indicated this was not the problem after all. It was at this point I felt I had to insist on seeing a rheumatologist and it is this person I am currently baffling. I waited more than four months after the referral for a first appointment and I went in a week when all was going very well. To be fair they did blood tests a scan and a hand xray but two months later I am no wiser and am awaiting a follow up. When my eyes began to irritate again I realised I could see the veins by my temples and if I touched them it hurt, likewise my arms. The attack lasted several weeks but has now passed so one minute you feel bad and the next you feel like a fraud. Does your situation come and go in this way?
I have eye and arm pain RIFHT NOW, that's why I came to Google for answers. The first site which came up was this one. And how interesting.
I have chronic pain. It mostly began in 2011.
My rh factor is "slightly elevated" but I'm "young" so it seems to not be taken with seriousness in all honesty.
My pain was so horrible this last flare up, for the first time ever in my right deltoid muscle, I could not raise my arm higher than my chest for the life of me.
It's relaxing slowly after three days. My eyes stung with sensitivity.
The blood test to determine imflammatory markers came back as normal. I had screwed up and taken a DIFLOCENAC. Maybe it inhibited the results? I told the Dr.
hi yes i can sympathise i was diagnosed with wg 8 yrs ago after a lot of treatment they say im in remmision because my bloods are coming back ok.im still in a lot of pain and swelling in my knee and i keep getting told its not the vasculitis im feeling angry and upset no one is listening to how i feel,hope you have better luck
Hi Tracey, Sorry to hear that you are not receiving the help you need. It seems sometimes as if their main focus is on cost rather than patient care, I have been told by more than one gp that referral for tests is expensive and cannot be undertaken unless they have good reason to expect a particular illness. In the end I had to insist as they were not able to provide a suitable treatment for the pain. I hope your knee improves.
Hi sorry hear that. I have wageners granulamatosis abs on 6 monthly Rituximab infusions. My bloods come back ok too. Except Anca which is positive. I was hospitalised for seven weeks couple of years ago with lung and kidney involvement. Bloods still on acceptable level but still get pain fatigue and swelling.Hope today helps
I had back problems for many years through my 30s and 40s as well as fatigue. At one point my doctor in Germany tried me on HRT and suddenly I was able to walk up the stairs without having to stand at the top and get my breath back (not in terms of being breathless but a sort of sigh, that's done, now what). Pred didn't remove the fatigue - but I was typically a PMR patient apart from age (51) and normal bloods.
I believe (and so do a few medical experts) that the autoimmune disorders sit along a spectrum and which you are told you have depends on the clinical picture and the blood tests and then they choose a label. Autoimmune disorders are very difficult to diagnose - there is no one test that will identify any of them, it requires some lateral thinking on the part of the doctor and one may say "that's it" merely because they came across something similar while doing their training. They are very rare.
I'm intrigued to know how they decided they'd treat you for OA - it has nothing to do with autoimmune disease and there is, when all is said and done, no drug treatment except pain killers. Or did you mean RA - though I do appreciate you are only too well aware of the difference.
As a codicil, I know this is slightly depressing but last year in South Wales a man of 37 (I think) died of a stroke and when the autopsy was done it was identified that it had been untreated GCA. 100% certainty - pathologists are the only people who can have that! If you have a vasculitis of any sort the blood flow through the arteries is likely to be affected and could cause muscle and joint problems just because of poor oxygen supply. I had some fairly typical GCA symptoms such as cough and sore throat (happens when upper chest arteries are affected) and jaw pain from time to time when chewing. For a few weeks I had the typical scalp pain - but it went away. No one ever asked me and at that time I didn't know its significance. I do now and discussed it with an ophthalmologist and a rheumatologist who are experts in GCA - who expressed surprise at such a symptom going away. My rheumy here in Italy agrees I almost certainly have something between simple PMR and GCA but hasn't done any further diagnostics since the pred dose controls everything and we have no way of monitoring it.
Hi PMRpro thanks for all this info. I shall bear it all in mind when I see the rheumatologist next. They diagnosed osteo arthritis based on my symptoms although I knew it was not appropriate. My pain often recedes or disappears when I am exercising then comes back as soon as I stop and I know that with osteo arthritis it is round the other way.
I had negative inflammatory blood results for many years. This is very common in the form of vasculitis I have - cerebral vasculitis. In later years my inflammation markers started to follow the disease activity, with plasma viscosity (similar to ESR) following flares/relapses, and my CRP constantly running high (often about 30/40). But even then we couldn't rely on them as a sign. The consultant uses my symptoms as the ultimate guide. Any doctor or consultant who assumes there must always be high inflammation levels in an auto-immune/inflammatory disease is putting their patients in danger IMHO. But it happens too frequently.
Absolutely Viv - but they seem desperate to have something "measured". Personally I think it's because they either didn't listen in their medical science classes (physiology and biochemistry etc), didn't understand them or decided in their arrogant ignorance that it doesn't matter and forgot it all. The idea that the ""typical" patient is all they will find is irritating too - a total lack of understanding of the bell-shaped normal distribution curve in statistics! Some of us occupy the tiny little triangles at the extreme left and right. Grrrrrrr!
Hi Viv, Can I ask what your symptoms are? Thanks for the message of support. I have been told more than once by a previous gp that I was wasting his time and depriving other patients who urgently needed him. Although I realise that he was wrong to make me feel guilty I still do feel uncomfortable about asking for medical help.
An enormous range of neurological ones. Probably best if you read the article about my case that was in the Vasculitis UK newsletter and is on their website at
"The consultant uses my symptoms as the ultimate guide. Any doctor or consultant who assumes there must always be high inflammation levels in an auto-immune/inflammatory disease is putting their patients in danger IMHO. But it happens too frequently."
I cannot agree more. I often mention re. doctors over-reliance on these laboratory tests whenever I see a Neurologist. He doesn't like me speaking this way. He's a man in authority and his authority should never be questioned. (I have not decided if I should go to GMC - I probably wouldn't) I have known one doctor (he's an old school medic and is a very caring and wise man) who knew these lab tests weren't anything as good as taking symptoms from patients. Sadly, this man of grace had to retire due to his old age and illness.
Hi braincurdle,
Don't know if this will be helpful or not but having read your comment above about your pain going away on exercising I wonder if you have ever been tested for ankalosing spondilitis/ spondyloarthropathy?
It quite often presents without raised inflammatory markers and the pain associated with it improves with exercise. It can also present with polymyalgic type symptoms.
I hope you manage to find a dagnosis/ answer soon.
Hi Keyes, Thanks for mentioning this. I used to take my dad to a pain clinic at the local hospital and I remember that this illness had it's own booklet. I read it while in the waiting room but this was a few years back and I dismissed it as not being quite right, but now I shall look at it again. Cheers and regards K.
Pain going away after doing some exercise could mean that your body gets warmer and your circulation gets better? (I know what you mean)
I have a terrible circulation problem. I literally feel the cold weather affecting my circulation as soon as I'm exposed to the low temperature like yesterday. I start getting horrible pain in my hip etc.
Hi Omega, thanks for all the info. I'm sorry I have not replied sooner but I appear to be having trouble accessing my post. What you have said about circulation is interesting as I keep having periods whereby I am very cold although the heating is on full blast. Hopefully I may know more when I get my next appointment. Anyway all these points that have been raised make me feel a bit more confident about fighting my corner. Thanks everyone.
Hi i am a 48 year old male and I suffer from something perhaps similar. I have been with this condition for the past six years. Different parts of my body get inflamed ( eyes, temporal arteries, joints, and others). The inflammation process does not seem to follow a pattern. It is a bit random and the inflammations do not stay in one place more than a few days continuously. I have already got some permanent damage caused by these inflammations My problem is that all my blood markers are negative. So no doctor wants to treat me because they are not sure of what i have and they do not want to investigate. I am very scared of what further dsmage will these inflammations produce. It may have been just a coincidence but these problems started a few weeks after I had a vasectomy.
If I were you I would let the doctor treat me with immunosuppressive drugs while you find out the source or cause f your condition. It will at least prevent further tissue damage. Although they also come with risks. I am trying to convince my doctor to treat me. Let me know if you would like to exchange experiences with your problem. perhaps our situations are similar. The larger the group the larger the probabilities if finding the cause
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