Vasculitis UK
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WG cannot confirmed??Worried

Thank you for anyone who can help answer my questions,this is a nightmare that has no ending and it really effects my life knowing about WG .

I had 3 blood tests done to confirmed C ANCA level and PR3 ANCA they were positive every time! The PR3 value was double the mean value in different name of test:

1st test in May2015 I had ref value <1 result 7.6 , C ANCA is weakly positive ,MPO ANCA normal

2nd time in July 2015 ref value <20 result 43 , C ANCA is positive, MPO ANCA normal

3rd time Aug 2015 ref value <5 result 11, C3 is low ref 0.9-1.8 result 0.68,.

I had seen 3 rheumatologist and none wanted to treat me saying that I had to show symptom.They test CRP and ESR value and mine are normal. One of them order CT scan on my lung,sinuses and the result are fine.

No other test was recommend! I dont want to wait until it is too late and the symptom will show!

Is it possible that the PR3 Anca value cannot confrim WG?

Can the doctor give some medication as a precuation since the blood test shows abnormal value?

What type of specialist can look into more detail of WG since the rheumatologists seem to concern only

on my joints which i never have problems.

I am having shoulder pain radiates to my shoulder blade and back, night sweat, dry cough,weight loss,headache and they saidnothing to worry yet!!

What should I do? Should I wait til the symptoms appear or seek more specialist diagnostic?

Thank you very much.

11 Replies
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Hello. Firstly can I ask why you are so convinced that you have WG? I ask this because I have had the same worries but my autoantibodies don't support WG and skin biopsies and other nerve tests don't support it (or other types of Vasculitis) either.

My new doctor seems to know that I'm not making it all up at least -and my ESR and CRP are often very high so I'm the opposite to you in terms of blood results. I did have the symptoms of Rheumatoid Arthritis for two years but these have gone now after a few years on disease modifying antirheumatic drugs and steroids. My last rheumatologist didn't dismiss me off his list but just said non erosive RA and too mild to risk more drug side effects for. This was quite reasonable to me but for the fact he was dismissing the nerve pain/ pins and needles and sensory issues and nose bleeds.

I do know what you mean about rheumatologists focussing mostly on joints but my new consultant also tested my eyes and mouth for dryness and felt my tummy and asked all sorts of questions no one has ever asked before.

I do get nose bleeds and sores a lot and have a nasty discomfort in my teeth and gums 23/7 which is why I thought of WG - and have had some very strange rashes and have paired ogliclonal bands in my Cerebral Spinal Fluid - which indicates a systemic process.

I've had pneumonia and severe wound infection and UTI sepsis this year but still my chest X-ray is clear, only mild atherosclerosis and raised cholesterol to show for myself - which worries me re possible strokes but doesn't seem to worry any of my medical team much so I think I just have to behave like I'm healthy until I'm really not. I've decided that whatever it is will either go away if I am busy enough or reveal itself properly. I hope not by causing a stroke - that's my main fear. But I'm being throughly tested now and if nothing shows up still then I will accept that whatever is going on is occurring slowly and I will try to stop worrying or finding a disease and fitting symptoms to match - which is very tempting with Google at my finger tips.

Worrying has got to be worse for me with confirmed autoimmunity I feel.

A lot of people with Sjogrens Syndrome have the symptoms you describe re shoulder pain and symptoms can mimic mild WG. Have you looked into this as a possible alternative I wonder?

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Hi NancyP,

It is all very confusing! You can be ANCA positive but not have Vasculitis and ANCA negative but actually do have an ANCA associated Vasculitis. Bloods are only part of the picture, the symptoms that you exhibit are just as important.

If you want to phone or e mail the VUK helpline then we can delve into this in more detail and try and give you some help and advice.

vasculitis.org.uk/helpline

Best wishes

Keyes

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If you have no symptoms that are relevant why are you so desperate for doctors to treat something they aren't convinced you have? The medications are not sweeties and without a much better idea of what is causing it they could use drugs that do nothing except lead to side effects. Giving you the wrong drugs won't necessarily stop something developing but could harm you.

The symptoms you describe also fit polymyalgia rheumatica or giant cell arteritis - where 1 in 5 patients has a normal ESR and CRP. As Keyes has said having positive tests isn't always a positive diagnosis - sometimes it is a "rule out" piece of information and sometimes you have all this information but there are some jigsaw pieces missing and you cannot see a meaningful picture.

I had symptoms like you - and was able to improve some of them with Pilates and using Bowen therapy while I waited for a diagnosis. There are things you can try in the meantime to help yourself - not least to help you relax a it because getting yourself into a state of panic will only make the back pain and headache even worse. But it will do you no good travelling from doctor to doctor implying that your previous doctors were no good and couldn't get things right. Eventually you will have exhausted all the possibilities and when you really DO have symptoms there will be no-one left to see.

I get the impression you are not a native English speaker - do you live in the UK? If so, take Keyes advice and call the helpline.

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Hi , Thank you everyone who gave me lots of advice. This is a support group that I found myself lucky to have joined.

I am so desperate to seek medication because I have read from articles that WG is best treated early to control the disease not spreading to vital organs like kidney ,lung,eyes, etc.

I am also have read that when you have both PR3 ANCA and C ANCA positive it is most likely(90%) to be WG. The longer you waited the harder to control. Some people have to wait for years until their vital organs had been damaged and symptoms became obvious.

I might have been too stress and trust everything I have read from the internet more than what the doctors told me. But when you have read so many delay cases that end up in tragic when life could be saved by proper and careful treatment , you cant help but worry for your condition.

I am in Melbourne, Australia and it is not common among GP here to be willing to discuss about this condition.

I am now trying to stay positive and keep myself fit by walking.

My eyes are burning on some days and getting red. I am not sure what to do.

My opthalmologist was the first one who ordered my ANCA blood test when she examined my eyes in April this year.

I will keep searching for more information here .

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Dear Nancy,

The best person to ask is John Mills, he has this condition, he, and his wife Susan, also 'runs' both Vasculitis UK and this 'forum'. Contact them both at 'jandsmills@btinternet.com' you will, I'm sure, find them very helpful indeed.

I send you my best wishes as we all do.

AndrewT

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Hi Nancy

I agree with the comments here. It is worrying to be ANCA positive but if there are no major symptoms I would not be keen to start potent drugs with side effects unless needed. At the same time you do need follow up by a specialist regularly.

As vasculitis can affect the kidneys it may be an idea to get a urine dipstick test done regularly (may be every 8 weeks) from your GP just to make sure its clear.

If there are focal symptoms a biopsy would be helpful, but there has to be a site they can biopsy

NZ

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Hi Nancy,

I realise this thread is two years old but if you are still around did you get to the bottom of this. I'm a bit similar to you. Positive PR3 and c-anca result on last two blood tests but have no symptoms of anything. I'm seeing an immunologist tomorrow. I don't really know if it is possible to have raised readings and no disease. It's discomforting thinking that something may be brewing. I too only came to the vasculitis site because the dr google pointed me this way.

By the way, I have been able to gleen that 90% of WG have +ve pr3 but that doesn't mean that 90% of people with +ve pr3 have WG. There is a difference. Guess I'll be a bit smarter tomorrow.

Hope it works out well for you.

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Hi croc099

Yes, I can understand the worry you may have!

My level of PR3 still abnormal (40-70)

and the ANCA still positive but I have had the need to take any medication until today. I need regular blood test though.

I saw few rheumatologists privately at the beginning until I

have the appointment at Royal Melbourne hospital.

I saw rheumatologist and it was not very helpful as they all concern with my joints which I never have concern. I had 3 time inflammation on my eyes and finally was referred to Eye hospital which I am continuing my appointments regularly.

Medication I took often is my migraine tablet and ibuprofen.

I have various symptoms such as sudden hot burning sensation , burning eye pain, muscle pain but I can go to work and having normal life and my doctor said I have a limited WG / undifferentiated WG. Doctor said the risk of having potent medicines to treat me with my only minor symptoms doesn't worth it.

I am under regular care with the hospital and my GP and they are kind and supportive.

Hope you can stop worry a little bit and sleep more! I think sleep is the good treatment for my WG! ( I used to sleep only 5hours a day but not anymore )

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Thank you Nancy, I'm in Australia as well, Sydney. I saw the immunologist today and she could find nothing wrong with me. I have no signs of WG or sclerosing cholangitis. Kidney and liver tests were fine and I don't feel sick. I asked whether it was normal to have an elevated PR3 and c-ANCA and have no disease. My PR3 is 5.1 and C-ANCA titer 20. She said that it was highly unusual and it may be a sign of something brewing and definitely needs monitoring.

I'm having another blood test in a couple of weeks and if it hasn't come down I will have some exploratory scans inside and she said that she'd be inclined to treat it with immunosuppressants to try to bring it down.

Guess I'm not so worried now that at least I'm having regular checks. I think she is interested because I'm an unusual case.

Thanks again Nancy and I hope things look up for you.

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Hi ,

Nice to hear from you.

I am in Melbourne and all specialists here I saw privately and public just ensure me not to worry and do not want to treat me with anything. They all said medicine for this disease is so toxic and it can damage my kidney and liver. I had lots of test done at the beginning CT chest and sinus,special blood test,lung xray.

I am 55 years old woman and had no other condition apart from migraine which I had since 30 years old.

My PR3 in the range of 6-7, C anca positive. It will be interesting to see if your doctor will treat you with anything.

Looking forward to hear your journey.

Cheers,

Nancy

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Thanks Nancy, I'll keep you posted when I know something. She just said immunosuppressants but didn't hint at type or dose or even if it may come to that. My c ANCA was positive but only just at a titre of 20. Looks like a life of regular blood checks for me now. I'm 60 yrs old and actually feel pretty good with no symptoms of anything. Must be why they think I'm interesting. At least I have their attention now.

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