Vasculitis UK
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Difficulty getting diagnosed

Hello. This is my first post since joining. I have only been ill for a few weeks, an illness that seems to have come out of the blue. But maybe not when I look back.

I will outline my problems in the hope that others have experienced a similar story and in the hope that they can give me some support in what to do next.

Ten weeks ago I had what I thought was a simple viral chest infection for a week which seemed to be resolving. However it then got worse with onset of cough, chest tightness, awful wheezing and secretions so off I went to the GP.over the next few weeks I had three lots of antibiotics, inhalers, and steroids without much response and no history of asthma, increasing shortness of breath and ongoing cough and extreme difficulty coughing up secretions. Three trips to A&E resulted in bloods and X-ray which were essentially normal.

Next I managed to get a chest CT scan which ruled out lung cancer and showed some patchy consolidation but nothing conclusive for the docs. GPs still saying probable viral illness.however no real temperature or muscle aches to go along with this.

Out of frustration I arranged a private rheumatology appointment as I had read up about vasculitis and I have a nursing background. I took copies of my investigations with me which were mostly normal except for one blood test showing raised eosinophils when I wasn't on steroids. Sputum tests were also normal for bugs and allergens. I do have a raised IgE result.

I also have a history of small growths in my nose, biopsied fifteen years ago and showing only inflammatory tissue. More recently I've experienced spontaneous nose bleeds, sores in my nose and intermittent runny nose. I also had a month of aching joints and muscle pains last autumn after the flu jab which were unexplained with normal blood tests and explained by a supposed reaction to the flu jab.

The rheumatologist was not convinced I have vasculitis and since I had already booked to see a chest consultant privately ( as this whole thing seems to take so long) he was feeling he would be more help. I saw him five days ago. He stopped my long term antibiotics and wanted me to wean off the steroids ( currently on 25mg a day) which will take about ten weeks. He will see me in two months for review, he's not really sure what's going on but feels steroids maybe masking the picture as all inflammatory markers are normal.

I have real concerns about the length of time this is taking and the possible damage to my lungs. Thankfully my kidney function is good with no blood in my urine on dipstick. I have just ordered some online to continue to monitor it myself.

As an experienced district nurse I feel frustrated that no one is putting the picture together and joining up the dots. Most of the docs and even my family consider me neurotic and impatient. It's a bit of a lonely place right now. I do have a very good GP but his experience is limited in this area and he is bound by the relevant consultants knowledge.

I have reduced the steroids by 5 mg daily since Wednesday and already my chest is tighter and I am coughing more. The fatigue continues and my voice sounds most peculiar. I had another nosebleed this week out of the blue. And the breathlessness continues.

I can't believe I am here. I thought I was fit and healthy, enjoying Scottish country dancing three times a week and an active lifestyle whilst still working part time. Now it's an effort to have a shower!!

I apologise for the length of this post but I am just so frustrated. Do I push to see someone at a centre of excellence or do I just wait until the steroids are weaned and my lung function is obviously deteriorating? Any advice gratefully received. John, I did speak to you on the helpline and would be grateful for your advice if you have time

Thank you

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Firstly, welcome to the group but sad that you have to be here. If you have the time to read some of the posts on here you will realise that you are not alone in this struggle but also that a lot of people have similar symptoms and problems with getting a diagnosis. My thoughts would be that you need to be referred to a centre of excellence where they deal specifically with Vasculitis. Vasculitis does seem to appear from nowhere for unexplained reasons. You need to get a diagnosis from someone who knows this illness and then you need the medication to help cope with it. You then need perseverance, patience and an understanding family. I see that you've already spoken to John which is a good move. The Vasculitis UK website has a wealth of information and the helpline is there if you need more info. If you do Facebook, there is a page called Vasculitis Support (UK). It's a closed group where you can discuss anything that concerns you. Good luck with your journey.

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Thank you Nadine. It's sometimes hard to keep pushing for yourself, it's much easier to be assertive on behalf of other people. Thank you for your advice, will follow it up. Need to try to get the family on board, think they are in denial and just want me back in normal role! I'm usually the one that holds it all together.

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Dear Districtnurse,

I am sorry for what you are going through. You will need to be firm with your family and tell them you are sick. What you describe sounds like eosinophilic pneumonitis, another rare autoimmune disease. However, like you, I was a nurse (a long time ago) and I not a doctor.

In my opinion, you shouldn't be tapering. steroids that fast and at that high dose reduction .If I were you, I would not taper at all with your symptoms until dealing with both a rheumatologist and pulmonologist. However, you are your own best doctor. Your symptoms are already coming back, and that is what happens during some tapers. I lost vision in one eye for several minutes when I had tapered by 50%. I took it upon myself to return to my original dose of 16mg.a day until a Neuro-ophthalmologist who diagnosed, through Doppler of orbits, that I had a central retinal vein occlusion which happened while tapering. Luckily, my eye switched back on.

I imagine you are thinking there is a chance for a quick diagnosis if prednisone is not there to cloud the diagnostic picture which it can. But for your safety, go slow or wait until you can see someone at a "center for excellence." There is a tapering schedule put together by this group; maybe one of the other members will direct you to it. I was advised at a vasculitis "specialty unit" in thé United States to go down 2.5 and hold for 3 weeks before dropping again. There is rarely a quick diagnosis.

I also had 2 separate flu like episodes ( in between fine) before my symptoms began in earnest; impossible to ignore.

Theses diseases are so rare that I do agree with Nadine to aggressively push ahead for an appt. with both a rheumatologist with a lot of vasculitis experience and a chest specialist at a "vasculitis unit." Also, if not already done, you need blood testing for PR3 or MPO, the antigens to the antibodies C and P-ANCA antibodies Have you had ANCA testing yet?

Sounds like you may need some more specialized scans and pulmonary function tests as well. It is going to be a long and bumpy ride with a lot of conflicting medical opinions. Expect to be frustrated and angry at times. That's why we are here.

The bloody nose, sores in nose, voice change and listlessness and fatigue , coughing, are symptoms of some type of vasculitis. I hope you don't smoke.

At some point we all get to a cure or a remission and do well or "well enough." But it's not easy. This is one time in life where we have to put ourselves first. Keep a journal so you will remember what to tell doctors. Go slow and steady. If any type of crisis develops, go to your emergency room ASAP. Best wishes.....

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Dear Christophene47

Thank you very much for your reply. I will push to see a vasculitis expert. I have had ANCA testing which was normal which hasn't helped my diagnosis. I'm not sure if that included what you suggest, will make sure. I'm also still waiting for rest of blood test results to rule out a primary immunodeficiency as my IgE was quite high.

I've never been a smoker which is on my side.

I will let you all know how I get on.

With all good wishes to everyone that is also going through this illness

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Hi, I have also never been a smoker and your symptoms are same as mine although I also get swollen face and fingers too.iv had nose biopsy kidney biopsy and kidneys have iga nephritus(not sure watt that is) and my nose had some granulomas not enough to prove anything and the one that was in my lung has disappeared since been on predisolone n methrexate they are convinced it wegners but can't say definitely so I'm In limbo too c +a anca are positive so I sympathise hope you get a result soon x

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Dear Sue

It's a frustrating time. Thank you for your reply. I hope you get sorted soon. Best wishes

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:)

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Dear district nurse if I were you I’d ask our helpline to recommend a good Vasculitis specialist as close to you as possible. You don’t say where you live. I see both dr Bruce’s team at Manchester Royal for specialist advice & my local hospital rheumatologist is good too. But there are also good Vasculitis specialists in Birmingham and Nottingham and Cambridge and no doubt other places. My gp referred me to Manchester.

You don’t mention being put on any immune suppressants which is the normal treatment and really high doses of prednisone. If you are struggling reducing your steroids I’d stay on your current dose until you get to see a good Vasculitis specialist. Your symptoms sound like it could be Vasculitis and that it should certainly be investigated properly - but I’m not a doctor. I have churg Strauss and had sudden onset of asthma, a chest infection, viral symptoms. Good luck - it is true you do have to keep pushing to get a diagnosis and have patience throughout the treatment. I hope you get the answers that you need soon.

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Dear Katie, thank you for your response. I live in Wales so will have to travel out of country I think to get the expertise I need. Hope to discuss the best option with John on helpline tomorrow. I am in the lucky position of being able to afford to go private as Welsh GPs can't refer across the border on the NHS. It goes against my socialist principles but I need to get this sorted. It has been really supportive to have all of your feedback, I do appreciate it.

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Hi and sorry you're not well. I'm not diagnosing but GPA can have nose, lung, kidney and joint involvement as well as 10% of us are ANCA negative. I also have "remarkably unremarkable" blood results. The helpline and the vasculitis Facebook page will be able to help you find the vasculitis expert nearest to you so you can ask for a referral. My consultant, as all of them should, listens to how I am as she has nothing else to go on as my scans are also normal. However, to help her manage/adjust medication with me, I keep a diary of events such as nose bleeds etc, I've categorised the tiredness into 3 (tired means a nap helps; exhausted means I can do it but it's a huge effort; fatigue means I couldn't move if there was a fire); I photograph the rashes and keep them in a folder on the phone and just give her the phone as it's easier than trying to explain. I also take photos of both profiles as well as up the centre of my nose to monitor for any changes. I use coconut oil on a cotton bud to soothe the linings of my nose and it softens the crusting so less damage; others prefer Vaseline but it's personal choice. I have 2 consultants supporting my needs however, I made sure the one managing things overall was the one with the vasculitis experience. Let us know how you get on. 💐

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Dear Maria, thank you so much for getting back to me. Also sorry you are having such a struggle. The diary is a good idea. I will let you know how I get on. Best wishes

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Dear district nurse.

So sorry to read your post and the frustration at getting the correct diagnosis.

I’m an ex nurse and when I was diagnosed over 19 years ago I was in a similar position to you in going to the Gp being to be told I had asthma, depression etc etc until I finally demanded a referral to an ENT specialist as I had constant increasing nosebleeds, and my nose was collapsing. I was immediately diagnosed following a nasal biopsy, despite ANCA negative blood results, I have in fact never been positive.

Do not give up as you know your own body and I wish you all the best and please keep us all informed of your journey.

JIll x

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Hi Districtnurse61

After 11 years of attending doctors witch increasing symptoms of allergies, rhinitis, sinusitis, asthma, loss of smell,taste and hearing, voice sounding differently I was in so much pain in my arms and legs that I presented myself at QEUH A&E dept. After several days I was diagnosed with EGPA at the age of 55. Many of my organs had been damaged including liver, spleen, left eye, nerves and muscles in my legs and right arm and hand. Above all, my heart was damaged and I had to have a defibrillator fitted to my heart. The day after it was fitted I was allowed out of hospital - 5 weeks after going in. I have been a very fit man all of my life and played tennis 3-4 times and golf1-2 times per week as well as going to gym. I found that I was very tired, but, keen to regain my fitness. I was off work for 6 months recuperating but this allowed me to walk and go to the gym regularly and rest appropriately. I had an 8 week phased return to work and have been working full time for 5 months now. I can play tennis and golf but still can’t hold the racquet or clubs properly with my right hand. I get tired more than I used to and don’t push myself to do as much cardio exercise as as I did previously. Only now do I feel that I will get back to somewhere near my previous fitness levels despite being very positive throughout. I would urge you to try not to get too down about your illness. Hopefully, like me you will get to know and understand why you have not been feeling well for a long time. I am sure that the medication will work for you as it worked for me. I started off on 80mg of prednisone daily but now on 10mg. Also on azothioprine for the EGPA as well as lots of other medicines for heart, allergies and asthma. They are all helping and I am in a much better place now than before I was diagnosed. Good luck and good health for the future.

Harry

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Thank you very much for your reply, so sorry you have had such a journey. But a very positive story which gives me hope. Best wishes for the future

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