Do you feel your present health status would have been better if you had:

[John_Mills]

a) Been diagnosed earlier

b) received more appropriate treatment and care

c) or both

Please leave any appropriate replies below.

Thank you

John

[Mirela09]

My health overall would have been better if I had been diagnosed earlier and correctly. I think the Vasculitis that affected my lungs initially and was diagnosed as Sarcoidosis would have not affected my kidneys ( if it would have been correctly diagnosed and treated) .But I also think that my lack of involvement and the fact that I did not took things seriously enough( felt better when I was put on steroids) did not help. I just wish my doctor would have been more prone to investigate my condition and more open to explain what is wrong with me.

But there is a big difference in care offered by the NHS in London alone.... better care in West London rather than East London.

Also it took three visits to the GP in 2018 when I was wrongly diagnosed to be sent to the hospital to be assessed. The GP in West London was not great either-saw three doctors complaining of joints pain and only the last one I saw reffed me to a hospital!

I think people like me - Zebras- should not have to wait that long and get lost in the referrals process....I honestly think it is a matter of luck when it comes to getting a correct diagnosis and a matter of running into passionate doctors that do this job as a vocation!

[Vqueen]

Definitely my health would have been better. However I was under 1 hospital in the Midlands back and forth for 18 months with a mis diagnosis of COPD and sarcoidosis. Eventually I was referred to another hospital and the care I've received is outstanding 👌 I feel lucky to be being seen and constantly involved with every step. Think mis diagnosis is a huge problem that needs to be addressed.

[Mirela09 in reply to Vqueen]

They also said I had Sarcoidosis...and that lung biopsy they used to diagnose was a terrible experience...I wonder if things would have been different if the doctor who diagnosed me would have done more digging and consulted with more doctors....maybe it wouldn't have affected my kidneys....but will never know!!

[Vqueen in reply to Mirela09]

Yeah I had the lung biopsy to, very unpleasant as for some reason sedation meds don't affect me. I had the highest dose I could but still 100% fine. Within having the biopsies I only had to wait a matter of weeks so consider myself lucky. Sorry to hear things aren't that great for you. Its so hard to stay positive as everyone seems to say but the massive positive in my life is family 👪 hope you have a good support bubble around you 🙏

[artists]

Because l was undiagnosed for many years it has had a negative and positive effect on my whole life . I did everything l could while l felt well , as l had always been told that l was obviously healthy . My symptoms came so severely and suddenly that l was never well enough to go for help at my worst . How do you convince the medical profession how very ill you feel when you look so healthy. Now that l have few well times it’s been easier to get a diagnosis. I wonder if l would have pushed myself to do so much if l had been diagnosed earlier . On the negative side maybe l would not have been as unwell had l been diagnosed earlier . Sorry this all sounds a bit muddled, but maybe you get my drift.

[Hoofprints]

Option C.

Took at least 20 years to diagnose.

And I still do not think I'm on appropriate treatment as my rheumatologist considers immunosuppression/steroids to be unnecessary based on blood results, even though the symptoms are increasing 😔 My neurologist suggested immunosuppression, but it seems the rheumatologist is boss!

[Mirela09 in reply to Hoofprints]

Yes the communication between departments and doctors in the NHS....needs improvement badly....plus they should conclude and agree on something together and then let you know what's what....makes you loose faith in them and is unprofessional!

[Hoofprints in reply to Mirela09]

Totally lost faith in just about all doctors. Don't know where to go from here, bit guess I'm not alone in feeling that way.

[vivdunstan Volunteer]

c) My diagnosis in 1997 was delayed by 3 years due to an initial ME misdiagnosis. And then even when treatment started (by which time I was already severely disabled from the late diagnosed brain damage) the strongest treatment then (Cyclophosphamide) was ruled out for fertility conerns. I relapsed hugely in 2004 and my cerebral vasculitis disease has become stubbornly active and progressive. I finally demanded Cyclophosphamide in 2012. It helped hugely. But my disease is too entrenched now. I'm facing a rather bleak future. I fell ill at just 22 in 1994.

[juli-pa]

I definitely think my health overall would have been better if diagnosed earlier especially my kidney function. I had chronic inflammation in my gallbladder when it was removed over 2 years ago. Chronic inflammation in my eyes which i was under Moorfields for 8 months. Crusting of my nose inflammation in my ears causing me to go death in one ear. This was then followed by gradual joint & muscle pain which I got to stage where I could bearly stand. Doctor said over phone without seeing me due to my age osteoarthritis. Eight months later &a lots of blood tests for RA finally got to see rheumatologist whom I think couldn’t believe I was left in so much pain. Referred ,me to kidney specialist biopsy confirmed GPA. The kidney specialist beloved from my gall bladder all symptoms were linked to the GPA. There needs to be more awareness as I was googling everything & nothing ever came up with suspected Vasculitis.

[Chris-Bromsgrove]

Whilst there was an avoidable delay in getting my diagnosis, I dont think it was significantly detrimental to my final outcome. However I do think there was an element of luck getting referred to the right place and getting the proper treatment.

[winfong]

I feel I was lucky. I went from scary, weird symptoms to docs with no clue to a couple of docs who were on the ball and got me diagnosed and treated. For me, it's more a matter of what might have happened. My wife and I speculate if I would have gone blind (GCA) or maybe not even around anymore (aortic dissection with LVV).

[Main1234]

My OH was first treated with 4 lots of antibiotics increasing in strength and then referred with ? Ca lung and had various tests which came back negative. In the mean time he was becoming weaker and seriously ill. Eventually after approx 6 weeks when his chest x ray was becoming worse he was admitted into hospital for more antibiotics. He then got the classic rash over his legs and eventually diagnosed by a rheumatologist and began treatment. I guess 8 weeks in total.

His treatment since diagnosis has been excellent.

[stuc]

Most definitely both, in fact diagnosed at all in uk would have been good. it took a holiday to France to get diagnosed. 18 months of suffering in the uk, not so much as even a blood test, just repeat after repeat of antibiotics, anti inflammatories and more. No interest in trying to find the root cause of repeated infections, severe ear and nose pain and inflamed joints. 2 days in France and I ended up in intensive care, my lungs packed in, 24 hrs later I was in a coma, diagnosed with GPA

On return to the UK 6 weeks later I was advised that I was very lucky to have been in France as the UK don’t test for GPA

The treatment I have received once diagnosed is first class but there is a fundamental problem in the NHS where GP’s treat the symptoms and not the cause

[Investigator1]

The GP I repeatedly went to with severe headaches and burning eyes (5 times) was flummoxed but didn’t ask anybody’s advice at the local practice which meant my condition advanced. I took it upon myself to go to eye casualty at hospital and by pure luck a junior doctor thought she had an idea, consulted and there we go. I was referred to the Renal Unit at James Cook in Middlesbrough they have looked after me since with my cyclophosphamide and now Rituximab. They are absolutely fantastic. My consultant is top drawer. How I got there though is a miracle.

[Boss302Fan]

B: I was prescribed 80 mg/d for treatment of PMR having no symptoms whatsoever of GCA and believe the side effects* of such a high dose could have been avoided.

*hypertension, ocular hypertension, osteopenia

[2013mayo]

Hi, Wow, can’t believe how many people have replied all saying the same thing. I too had been going to my doctor for a very long time before being diagnosed with GCA/ large vessel vasculitis .

I had severe headaches for so long I just thought it was normal, also chest infections continually, antibiotic every other month.

I was feeling so poorly and just never got anywhere, I had night sweats, lost a lot of weight, vision problems, strange rashes.

Eventually I became so ill on holiday in Spain I spent a week in bed, when I came home my doc gave me another course of antibiotic, but my sight had become so bad in one eye, huge black spot in field of vision, headache like never before, I went to eye hosp, a junior doc discovered I’d got GCA, and the rest is history.

Since being on pred the headaches stopped, the rashes stopped and the chest infections stopped. I’m still very weak, I don’t think I’ll ever go back to how I was, my vision has really gone downhill, but the headaches have gone, I can control the PMR with pred to a certain extent.

Take care.xx

[foweraker]

C, definitely

[Tbrz]

Both - it took 18 months to diagnose me, despite repeated trips for infections, all getting worse, a stay in hospital, discharged while coughing up blood! Finally, by chance got in front of a doctor who actually looked at my X-rays -and saw my lungs - initially thought it was lung cancer. Over a week later was diagnosed. I do think my late diagnosis snd subsequent treatment, 9 rounds of chemo and maintenance immune suppression drug, which didn’t stabilise me. Finally, a year later got referred to Addenbrookes and was put on 6 monthly Rituximab. This has stabilised me so I am able to reduce the steroids; however, all of this has left long term effects to my health, which I am cross about. I have not been able to return to work, deeply upsetting for me. I struggle with walking, due neuropathy in my feet and legs. Struggle to read, once a great passion for me, due to brain fog. Basically, I have had to accept a lot of my life has changed and yet I have no come back on any of the doctors or consultants I saw. I really feel I was ignored and dismissed whenever I kept saying how ill I was feeling with sinus infections, which were getting worse and worse along with a continuing cough, burst ear drums, severe tinnitus (which I still have). I am just lucky it did not get to my kidneys. I know it is a rare condition, but when someone is repeatedly going to doctors/ consultants other questions need to be asked and surely you do not discharge a patient when they are coughing up blood.

[amms43]

I feel sure that had I received better interest and care from my GPs my current health would be much better. I started with idiopathic pneumonia in 1998. It was only after 4 appointments over 4 weeks that I became so ill I planted myself in the surgery and refused to leave until I was examined. I was sent immediately to Papworth Hospital where I remained in HDU for eight days. Even there the violent rash on my legs was said to be a reaction to the i.v. antibiotics despite having appeared well before I received the antibiotics.

Perhaps the most difficult part of the process has been not being believed. The various symptoms - mostly invisible - progressed and multiplied and it was only when I was told I was mentally ill and obsessed with my health that I lost my temper and went privately to a series of specialists in London recommended by a doctor friend. Within a month I had a diagnosis. I (I again - not the GPs) discovered the wonderful clinic at Addenbrookes and transferred to Cambridge.

Sadly the GPs still have no interest and I think do not really believe there is anything wrong with me. I was not diagnosed until 2006 and transferred to Cambridge in 2007. As a specialist explained to me, by the time I called the fire brigade to my house the roof had fallen in. They were able to quench the flames but too late to save the roof. An accurate analogy I think.

As Mirela09 (below) describes, it is a matter of finding a doctor with passion, curiosity and a vocation. I am so grateful for the care and treatment I now receive from interested and empathetic doctors and wonderful specialist nurses.

[ErnieP1960]

In my case neither really apply. When my symptoms started I was referred to Rheumatology at James Cook hospital. There was a gap of a few months between referral and getting a rheumatologist appointment when I was in some considerable pain. I was diagnosed and treatment started for GPA within a few days of that consultation. Although unpleasant I don’t feel that the gap between referral and first consultation has made a great difference to my present health status.

[Rodelinda]

In spite of being a retired anaesthetist, I too was dealt with badly by local GP's for over 2 months. I was referred to Moorfields for my red painful eyes but they missed the diagnosis also. All the usual symptoms but no blood tests until I demanded by which time I was taken by a friend to a private unit where I was seen by 5 specialists I was so ill and finally a diagnosis made. ANCA was 400 and Creatinine over 400. I have recovered well with only occasional symptoms and my renal function is back to normal but still on Prednisolone 5mg and Azothiaprine. I have only had telephone consultations with my Specialist ( as now under NHS) since COVID started. I phone the GP and ask for blood tests to be done 3 monthly.

[Oakwillow]

replying with what I think my sister would say in that yes, it was missed. After a bout of pneumonia in 2017 whilst still an inpatient she developed a runny nose and it was dismissed. subsequent ear problems, seen by multiple ENT consultants, deafness, tinnitus, otitis etc. Dry eye? Meibommian gland problems -again ignored by NHS. Then joint problems, weight loss, fatigue. Finally admitted to hosp with presumed pneumonia again which coincided with red eye and worsening pain. Eventually vasculitis diagnosed bu they seem unsure what type as nose biopsy inconclusive despite typical nose symptoms and pain. Lung and kidney problems. We both thought something was ongoing but not what = as initially it seemed confined to ears and eyes though ongoing.

As an ex nurse it wasn't something I am familiar with. I thought it might be in the arthritic family eg polymyalgia rheumatica/plus an anaemia. Wondering if I might have early symptoms. As her twin we sometimes get the same things and I have another autoimmune disease, mucous membrane pemphigoid (mild). Wonder what GP will say?? Wish there had been a way for all of you to diagnose this earlier.

[Chipper03]

Both. My asthma got progressively worse over 9 years, not responding well to usual asthma treatments. A respiratory consultant said I had atypical asthma and didn’t pursue it further. About 18 months was spent finding out if I had allergies, which I don’t. The last three months before diagnosis as I went into the acute phase, I was so ill, dreadful pain and skin rashes and barely able to breathe, GP insisted it was chicken pox, which I’d had before, and rheumatologist implied it was psychological. Neuropathy in my feet was progressing fast when I was finally admitted to hospital (my family took me in) and started on steroids, and I’ve never regained those nerves. If I’d started steroids earlier I would definitely have less neuropathy.

I’ve been told subsequently my eosinophils were incredibly high, and I now know that would shown up in all the blood tests that were done. It seems incredible nobody looked up what high eosinophils might mean. The rheumatologist finally diagnosed EGPA while I was in hospital and moved me to a respiratory consultant for ongoing treatment. I take prednisolone and azathioprine.

[eh66]

Actually no. I am currently in remission which considering I was hospitalised December 2020. Until I went down hill rather rapidly I had joint pain diagnosed as mild arthritis and sinusitis. I was however very fit. I am now almost back to same fitness levels judging by a resting heart rate in the 50s and normal blood pressure. To diagnose my condition prior to collapse, would have been searching for a needle in a large hay stack. I got the care I needed when I needed it. I have a got consultant based in the renal unit who very dynamic. I ate well before but I do try to ensure I eat at least five fruit and veg a day, plus daily exercise. I currently take no steroids, just a general antibiotic, statin and blood pressure meds. I see the consultant again next week so hopefully I might reduce my meds further,

[Paprika60]

Option B! Despite diagnosis within 3 months of referral, I was prescribed too many wrong drugs which weakened my system. It is not the case of doctors not knowing what drugs work better but more the case of trying the cheaper drugs first to see if it might do the tricks. A huge waste of so much time (my life) and costly to my condition and suffering. NHS is wonderful in so many ways but not in efficiency of treatment and prevention.

[Katie18]

If I’d been diagnosed earlier I wouldn’t have suffered nerve damage. A respiratory consultant picked it up from some allergy tests as it was in my notes but then went on and decided not to give me an appointment to tell me or start any treatment for another 6 months

[ZiggyDiego]

I was diagnosed relatively quickly (4 months from first really alarming symptoms). But even in that 4 months I had two cancer scares. The first one was for oral cancer as I had lesions on my tongue and mouth, and I had to have a tongue biopsy. That was by far the most traumatic investigation I’ve experienced and was awful to deal with at a time when I was also struggling with serious eye inflammation, severe joint pain and alarming neurological symptoms. Looking back, what really didn’t help was the cancer target process which meant symptoms hit red flags in isolation. The impact now is that I question doctors repeatedly about what they are going to do and why, because part of me is still convinced they just don’t really get it, especially as they tend to specialise in separate body structures/functions, or in general practice which by definition doesn’t usually include vasculitis.

My care and treatment has largely been excellent with one exception. It’s obvious now to me that prednisolone gave me an elated mood from the very early days - I was so unwell I didn’t realise I was manic. After awful experiences I know now that prednisolone is a very dangerous drug for me. I do feel if I was better monitored in the early days for my mental illhealth as well as what my blood tests & physical symptoms were indicated, the subsequent problems might have been less severe with prednisolone.

[LizzieAFib]

Although I had excellent care at QEH, Birmingham I would probably have had less ongoing problems (eg AF) had I been diagnosed earlier. Took many months, including being in Hereford hospital before I was referred to QEH.

[2534]

A) yes, by several years

C) yes. Now have excellent treatment and care (Addenbrooke’s) but failure to diagnose Vasculitis meant years on damaging but useless drugs. Also until then, unwillingness to offer Rituximab saying it couldn’t be prescribed by NHS for Vasculitis (not true)

Two further points:

1. Was originally diagnosed as sero-negative Rheumatoid arthritis. Had maybe 6 years on a succession of drugs which have a heavy impact (MTX etc without success) Only then was I offered Cyclophosphamide (very heavy impact on me and in my case it didn’t work) and finally a TNF inhibitor Humira

One of the specialist nurses said there was research to show that if someone was given a TNF inhibitor early on the RA may be arrested or at least significantly reduced. Now we have to go the route of taking a series of unpleasant drugs with little hope of remission so the lack of success ‘qualifies’ you for a drug that will work! Crazy logic. Spend the money soon after the first proper diagnosis and save money later, save patient and clinical staff time, and in the case of the patient years on drugs that don’t work and risk of depression

2. In the early years I was bundled round the nhs being passed from one consultant to another. Even though they said their brief included Erythromelalgia (secondary to Vasculitis) they did not take me on, in one case clearly wanting to only accept patients with scleroderma as they wanted such a cohort for research. It took around 20 referrals before a neuro physiologist recommended David Jayne who put me straight away on RTX. The money and waste of clinical specialist time and my time and well-being was enormous.

(Have kept details drugs dates etc if they would help).

All best

A

[Galaxy2]

Both, I was misdiagnosed and feel much damage was done by this by not being on immune suppressants, when I was eventually diagnosed I was put on mycophenolate which I don’t believe was strong enough as I had a big relapse once I returned to full time work, I suffered permanent nerve damage for a second time as a result. I am under brilliant care now , under neurology at the Royal Free but I do wish I had found this earlier.

[Nell]

Most definitely to both

[John_Mills Volunteer]

Thank you for all your replies which we are currently reading and digesting… will get back to you with more information ASAP….If anyone is still struggling with getting a diagnosis or appropriate treatment please contact the VUK helpline vasculitis.org.uk/helpline

[Theidealistrealist]

b) for me. I appreciate these things are very difficult to diagnose but I was dismissed repeatedly in A&E, and by NHS doctors, my 'blood work was fine'. Finally went to a private GP and got the ball rolling - went back into NHS under rhematology. I've ended up spending thousands, and doing alot of my own research into autoimmune conditions. For my experience, it was here's some hydrochoriquine and steroids, good luck!

[Red-head44]

A) noB) no

[Chesca64]

C sadly 😢

[ReidyWG]

Most definitely a) because of three years of investigations massive doses of antiinflammatory medication.

[HereToLearn]

C for me.