I thought that I would share my recent, and still ongoing, experience of vasculitis which has made me realise just how fortunate I have been in getting a speedy diagnosis and first class treatment.
(BTW: I have a degree in Physics so am used to doing tests and monitoring trends etc, so this write up is quite detailed based on my high level of observations and daily spreadsheet recording).
First a bit about my medical background which has an extensive history of other autoimmune diseases as listed below. Of these only Sarcoidosis is not definitely an autoimmune disease but involves inflammation of any part of the body (in my case it was lymph glands). So I have quite an extensive history and in addition have had other allergies over many years, including adult onset asthma, hay fever and also nasal polyps.
- Diabetes Type 1 (age 27) - 43 yrs insulin dependent & no complications
- Asthma (age 35)
- Sarcoidosis (age 40 ... but no longer active)
- Addison's Disease (age 66 ... take 25mg Hydrocortisone for this))
- Vasculitis (age 70 - Apr 2013)
I also have Atrial Fibrillation for which I take Warfarin. So my heartbeat is fast (140 beats/min) and irregular.
So how and when did this latest condition start to develop?
My asthma has been well controlled for many years, with the latest range of inhalers and so I've never had a major problem with breathlessness even after heavy exertion doing garden projects and I regularly go caravanning with coastal path and hill walking. However in the winters of 2008 and 2009 I ended up in hospital for 2 and 3 weeks respectively with severe chest infections rapidly developing into pneumonia. However after the normal inpatient oxygen, steroid and antibiotics treatment, I left hospital feeling back to normal with no breathing restrictions and no need for follow up appointments.
Then next two winters (2010 and 2011) I had no problems, so I was starting to feel optimistic (how wrong was I !). Then this winter, at the end of Nov I noticed that I was starting to become breathless when walking briskly upstairs or other exertion. I also noticed that my left ankle and foot has swollen, so I had to raise it to reduce the swelling. Also noticed puffiness around my eyes on waking. My GP prescribed antibiotics, but still no better, so had two more courses of antibiotics .. still no better. This was very unusual based on my past experience.
By mid-Feb breathlessness getting worse so got myself checked into local hospital respiratory ward (Frimley Park Hospital, Camberley, Surrey .. excellent hospital which was runner up in the Dr Forster "NHS Hospital of the Year 2012" awards recently ... frimleypark.nhs.uk/ ) for five days where the usual course of oxygen, steroids and antibiotics got my SAT level (blood oxygen saturation) back up to 94% which is about my max these days (normal is 95 to 100%).
Then .. five weeks later, coming up to Easter, all sorts of strange and unusual symptoms started to occur:-
- lesions appeared on my hands and fingers
- breathlessness started to get much worse
- thigh muscles started to be really painful on climbing stairs etc
- a rash appeared on my lower left leg
- sore throat and sneezing as though I had a heavy cold
- severe nasal crusting
- numbness on side of right thumb
This was really strange since, although I am 70 years old, I am very active and generally fit, and I had never experienced so many unusual symptoms all at the same time .. I was getting worried
By Easter Monday (1st Apr), with no local surgery open, I decided to visit A&E for advice since things were rapidly getting worse, particularly the spread of skin legions which now appeared on my feet and elbows also. All they could offer was another course of antibiotics and hope that would work .. it didn't of course! Also noticed my blood sugars, normally well controlled by four insulin injections per day, started to go high. This is often a sign of uncontrolled infection and all I can do is inject larger doses to bring the blood sugar down into control.
Over the next 3 weeks, despite yet more antibiotics from my GP, nothing improved, but got worse .....
The key date in this story is Mon 22nd April, since on that day I visited my GP, yet again, when she took some basic blood tests and prescribed different antibiotics. Later that day was also my follow up appointment to see the chest consultant following my hospital stay in mid-Feb, and my GP quite rightly said I should mention these symptoms to him in case they were related .. they were! The discharge notes (I get a copy of all letters sent by consultants to my GP on the conclusions from the appointments) contained the following comment ...
"Bloods showed raised inflammatory markers. Interestingly, bloods also showed a raised eosinophil count of 1.4 - ? cause" .. HR HT Scan needed.. follow up appt in respiratory outpatients made (22nd Apr)"
So .. when I had my appointment with the chest consultant later that day, I immediately mentioned about the lesions and other symptoms I was experiencing. He gave me an examination, and then said .. "This is an allergic type reaction and I'm almost certain I know what this is .. it is an autoimmune disease called Vasculitis".
I of course had never heard of this condition before, but realised just how lucky I was to have this wide range of symptoms showing on the exact day of my appointment with an specialist consultant. So it was only 3 weeks since the condition had really started to get active (early April), and I now had a diagnosis ... wow! Judging from some of the stories on this web site, that would appear to be a very quick time to get a definitive diagnosis of a disease which is rather rare and hard to track down for quite some time. So hopefully not too much damage had already been done to any organs affected, which in my case appeared to be mainly my lungs .. how lucky was I then!
The chest consultant immediately prescribed 25mg Prednisolone plus a full blood test. He also got me an appointment 4 days later to see the Rheumatology consultant, who then prescribed Mycophenolate (CellCept) and strongly suggested it was Churg-Strauss Syndrome. He then got me an appointment one day later with the Dermatology consultant to inspect the lesions, and then a biopsy from my left calf was arranged to confirm vasculitis rather than the possible autoimmune skin disease called bullous .. it was confirmed as vasculitis. So in just one week I had seen THREE specialist consultants, a defined diagnosis, had multiple blood tests, medication prescribed and already the symptoms were starting to subside.
Regarding timescales, it was 10 weeks ago that the hand lesions started to appear, and the diagnosis was 7 weeks ago yesterday, so I'm now entering the 11th week of vasculitis and 8th week of treatment.
Medication Timeline & Symptoms
wk 1 (22 Apr) - diagnosis: SAT 89% (low); Pulse 140!!. Prescribed Prednisolone 25mg.
- bloods showed high inflammatory marker eosinophil count of 5.2
- coughing thick green phlegm with blood
- by end of week: breathing improving & lesions drying up.
wk 2 (29 Apr) - Pred reduced to 25mg + added Mycophenolate 500mg 2/day.
wk 3 (6 May) - Pred up to 30mg + increased Mycophenolate 1000mg 2/day
- bloods showed inflammatory marker eosinophil now normal at 0.1
wk 4 (13 May) - Pred down to 25mg
wk 5 (20 May) - Pred down to 15mg
wk 6 (27 May) - Furosemide 20mg added to treat bad leg/foot retained fluid (oedema)
- Inflammation marker: CRP 101 (up)
wk 7 (3 Jun) - Pred down to 10mg. Inflammation marker: CRP 48 (down)
wk 8 (10 Jun) -
- breathing much improved, but not back to what I would 'ideally' like: SAT 94 - 95% (up); Pulse 110 (down from 140). Phlegm now clear and white
- lesions have long since gone and no new ones
- slight rash on lower left leg
- biopsy sites (x2) still healing & dressing changed every 3 days at medical centre
- leg/foot swelling: still some on left leg/foot but totally gone on right leg (why is only one leg affected?)
- leg muscle pains: totally gone
Like most others on this website I had never heard of this autoimmune disease before, and consider myself very lucky in my experience of it so far, because:-
- diagnosis was very quick
- just by chance my chest consultant's follow up appt coincided with the eruption of symptoms
- my GP admitted that otherwise it would have taken her sometime to get a consultant (dermitology) appointment to further investigate, with possible organ damage due to delayed diagnosis. She had only experienced vasculitis very rarely
- Frimley Park Hospital are quite rightly rated amongst the best hospitals in the UK. The Dr Forster rating is based on inpatient mortality rates and efficiency of operations and financial control, but their OPD and consultants are also really good. The inpatient food is also excellent Well done NHS
- Appointments with three specialist consultants within 6 days is really impressive
- My regular consultant (rheumatology) sees me every Wed at the start or end of his clinic.
He also emails me regularly to update on latest blood test results and I email him on Friday afternoon on my current status.
Any questions or comments?
I have related my experience of vasculitis in some detail here so as to provide any newly diagnosed patients on what possibly to expect through their early journey in this disease. I realise that this disease manifests itself in a very wide range of severity and symptoms, and what I've related here is just my own experience of a not-too-severe case of Churg-Strauss Syndrome.
If you have any questions or comments .. please feel free to add them.