I'm fairly new to the whole vasculitis thing and am still going through the motions in order to get a diagnosis.
I have already seen respiratory, ENT and immunology consultants, and they strongly suspect I have either EPGA or GPA based on blood results and CT scans but as this is quite a niche area of medicine, would like a specialist (ideally rheumatology) opinion as well to decide what treatment I should have and which of the two it is.
Would anyone have any recommendations for vasculitis specialists in Churg Strauss Syndrome / EPGA or GPA in or near London? Ideally rhuematologists and doctors who also have private clinics
Any advice appreciated
Thanks
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citygirl1234
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I myself posted this same question a week or so ago.
I have an appointment booked next Tuesday morning privately with Dr Dcruz as per others recommendations from this site. I have to be there at 8.30am in the morning. I would travel to Hong Kong if I had too right now.
Past few days I’ve had an ulcer up the inside of my nose. Felt like it was going to explode. Physically and mentally drained from this all.
I will be happy to give feedback once I have attended the appointment on 07/08/2018
I totally understand... feel a bit like a human pincushion at the moment with so many blood tests... That sounds horrible : / Hopefully Dr Dcruz will be able to help you, fingers crossed for you. Would be interested to hear how you get on
My husband was diagnosed with Eosinophilic grandulomatosis with polyangiitis (ANCA positive) in 2017. He attends the Nuffield Orthopaedic Hosp in Headington, Oxford under Prof Rashid Luqmanii who made the diagnosis and has a specialist knowledge of this auto immune disease.
Prof. Alan Salama, with his team, at the Royal Free Hospital (Hampstead, north Lodon) has done very well for me. He deals with all types of vasculitis.
Given that the consultants you have seen so far suspect vasculitis, they (or your GP) should be able to get you an urgent NHS referral to a vasculitis consultant of your choice.
However Prof. Salama also works privately if that is what you want. A Google search will show him on many websites.
Thanks - do you know roughly what the waiting times are like for NHS? Glad to hear things are going well for you. The waiting time is the main issue for me as would really like to get this sorted as it's becoming very difficult to keep taking time off work for all of the appointments. I work full time so trying to fit appointments around work is a nightmare. My GP is lovely but has admitted not knowing much about vasculitis
I can't say for certain what the NHS waiting time would be, as my initial experience was almost four years ago and therefore may be out of date
However vasculitis is a disease which can lie dormant but can erupt at zero notice and might then cause major organ damage very quickly. Therefore once there is reason for vasculitis to be suspected - which in your case appears to be the position - a consultant appointment should be very quick.
I suggest you phone the Vasculitus UK Helpline - see vasculitis.org.uk/helpline - as soon as you can. I'm sure the experienced volunteers there will be able to answer your question. They may also be able to give advice on what needs to be written in a referral to ensure that it is treated with the necessary urgency.
Of course taking the NHS route may not mean that you see a specific consultant - after all if he / she is away then you don't want to wait. However in the case of the Royal Free I can safely say that Alan Salama's co-consultants Sally Hamour and Aine Burns are equally to be recommended; the three work as a very close-knit team.
Thanks for the quick reply. I will definitely ring the helpline - they sound very helpful. I've done some reading on CS / EPGA and WG / GPA and I agree, they are definitely things that need to have a close eye kept on them. Fortunately for me, I don't feel physically that ill but the CTs and bloods are saying differently and I'm well aware that things can change very quickly with vasculitis so I need to keep on top of it. Touch wood, no kidney or lung damage so far though, thankfully, so they think I am in very early stages as that ANA and ANCA results refuse to go away no matter how many times they repeat them.
I've gone down the NHS route at the moment, and the doctors themselves are great, but unfortunately every time I see one of them it takes a month or so for the notes and bloods / scans to be written up, which means it is hard to coordinate between the specialists (I'm currently still in the see saw phase going between all of them).
I'm glad you've had a very good experience at the Royal Free, I will bear that in mind. I'm based in East London so fall under St Barts, so I will have to ask my GP whether that will impact the waiting time. The main thing that the immunologist told me on Friday is that I need a treatment plan ASAP and for someone to decide which of the two it is. (ENT and immunology are on team Churg Strauss and respiratory think it's GPA / Wegener's)
1. As far as I can see Barts do not have vasculitis specialists. They do deal with Behcet's Syndrome, which I beleive is similar but not the same. The London hospitals which deal with vasculitis seem to be Guys, Hammersmith and Royal Free - but I'm sure the Helpline will be able to confirm this or otherwise.
For seeing specialist consultants the NHS does not limit you to any specific geographical area and asking to see someone of your choice should not cause delay - providing that if you ask for Mr. A and get offered Ms. B then you accept.
2. You should not have to wait for notes (by which I assume you mean the hospital letter to your GP) to be written up to see your blood etc. test results. There is an official website called Patient View which picks up your results and reports them to you direct - often the same evening and almost always within two days.
Patient View mainly operates for renal departments (it used to be called Renal Patient View), so if your vasculitis consultant is located within the hospital renal department then you can sign up for this service. This is the case at Royal Free - if you go there you'll find the Patient View leaflet at the renal clinic reception desk. Or you can look now at patientview.org and patientview.org/#/request
Also the people I see at Royal Free generally get the GP letter out within 8 - 10 days. Ocasionally I have to chase the consultants' secretary, but that usually does the trick. I would add that Patient View has a facility to give you the GP letter electronically, but this doesn't work for the Royal Free as their letter computer system won't talk to the PV one. So the letter still comes by snail mail, as the NHS seems allergic to using e-mail for official communications. However the vasculitis consultants happily talk to me by e-mail (and phone) if something urgent arises.
Sorry if I sound like a Royal Free salesman! Like you I'm fortunately not physically il, and they've succeeded for four years to keep things that way.
Hi, yes, those were also the hospitals also recommended to me by the help line, so I may end up being referred there soon.
That's good. Unfortunately for me, none of the hospitals that I am currently under use this system (or only for renal departments). I have several family members who are medical so I understand that the note write up time varies a lot from consultant to consultant, depending on their workload and the amount of secretarial support that they have available etc. so I just have to be patient.
Glad to here everything is under control for you, hopefully things will continue to stay that way
I have now been on the Vasculitis road for about 3.5 years. I started on 75mg of Prednisone and now down to 14mg.
Firstly how you feel is so so normal and is exactly how I felt. I wish what I know now I had back then.
My best advice is work with a group of specialists. I have a Neurologist and Immunologist and since now having started menopause an Endocrinologist.
My Immunologist started me on IVIg monthly Infusions which has been helped me considerably. After about 18 months I was not improving so was put on a 18 month treatment of a drug called cyclophosphamide which was traditionally used for Leukaemia. I had both oral tablets daily and Infusions.
For me I have found ensuring you have each professional talks to each other.
The other advice that sounds straightforward, but I have found is esential is to write down all your questions before seeing each Dr. In addition keep notes on how you are feeling in between appointments. I was seeing my Neuro every four weeks and my appointments aren’t long so he wants to know a summary on my past four weeks.
The other thing is be specific and direct all your questions RE Vasculitis that pertain to each specialist.
The other thing is my blood markers for example don’t show inflammation so was difficult to diagnosis Vasculitis initially. I had to have a nerve biopsy taken to understand what was happening following a nerve conduction study.
I have had MRI’s, CT Scans, Lumbar Punctures, Nerve Conductive Tests.
Thank you for your message and your advice. I'm doing my best to get the doctors to liaise with each other but it is much harder than it sounds, as I'm sure you know!
I'm 24 and female so the doctors have been optimistically rerunning various blood tests hoping (like me) that they would come back normal, as some of the remission inducing drugs like cyclophosphamide have some really quite horrible side effects (although they are effective at keeping the vasculitis under control). How did you find the cyclophosphamide?
I'm glad your neurologist was able to help you even if it was quite a long (and by the sounds of it quite painful) process. My sister had a lumbar puncture last year and I wouldn't wish one on anyone. My doctors were dropping heavy hints that they would like ENT to biopsy my sinuses to confirm, but I guess I will find out more on Monday when I see ENT.
Did things become a lot easier for you once you had a formal diagnosis?
Hi, I have just been diagnosed with Vasculitis (Churg–Strauss) and have just start the cyclophosphamide infusions. Your diagnosis was a year ago, I hope all is going well with you. I would be really interested in hearing about your journey. Kind regards
I hope your infusions are going OK, it must be a lot to take in! Fingers crossed for you that it knocks the Churg Strauss / EPGA into touch.
Thank you, it doesn’t feel that long ago but it must be! I ended up at Guy’s hospital (Prof D’Cruz at the lupus unit is also a vasculitis specialist) where they decided not to split hairs and just treat me for “ANCA vasculitis”. If you are not already being seen by all departments at one hospital, I thoroughly recommend it. Getting all of my doctors under one roof has made an enormous difference to me as I no longer have to lug a large lever arch file with me to every appointment and if my doctors forget to tell each other things (which unfortunately still happens) they can look it up on the internal system. My treatment took a while to kick in - the steroid high wore off quite quickly and I felt rubbish for ages (until this year), but do persevere. Things should improve as long as you stick with the treatments
Hi city girl, just been reading up on some of your posts and seen you have gone with Professor D Cruz. Did he treat you very differently to your GP/consultant in the past? I am asking as very unhappy with who I see (even though it is Addenbrookes) and would love to talk to somebody else about my treatment. (Privately) but don.t want my current consultant to necessarily know at the moment , I am so glad you are feeling better about your treatment plan. I am currently weaning off steroids and on methotrexate injections which are not working (steroids work but am cushingoid now with 3 stone weight gain in a year) I don.t think they know what they are doing and its just a guessing game for me. I need to be assertive and do something about who I see. I am in a lot of pain at the moment as reached the point with steroid taper where I need to stop. I am p anca positive but no name for my vasculitis.
I would recommend Dr Pyne at the Royal London who you could also see privately at BMI London Independent. I was diagnosed in April and am currently on cyclophosphamide infusions and prednisone. Good luck!
I found that the big difference was that he looked at the bigger picture, going through everything (all results and all symptoms) from the beginning but also letting me speak and not just looking at the results or whatever the previous doctor had written. I see him on the NHS and he was very generous with his time at my first appointment, but thereafter I see him for about 5 minutes at the end of each follow up appointment which is normally with another doctor. He does actually listen to what I say, and always tries to give me different treatment options to choose from so I don’t feel like I’m being dictated to.
I’m sorry to hear you feel so stuck. That really sucks. I don’t know who you see at Addenbrooke’s but I don’t see any harm in getting a second opinion. The only thing to bear in mind is that Prof D’Cruz is quite popular and you may have to wait a couple of months to see him privately (and longer if on the NHS). Personally if you can afford it, I would see him privately (make sure you bring all of your notes from Addenbrooke’s, blood tests, scan results etc) so that you can take your time, relax a bit and ask all of your questions without feeling like you need to rush. You don’t need a referral letter from your GP to the London lupus centre at London Bridge to book an appointment but you probably will do if you are using private insurance to pay for the appointment.
Regardless of whether you see Prof D’Cruz or another specialist and on the NHS or privately, they should not share any details with Addenbrooke’s without your consent.
Steroid tapering really sucks Is there any way you can ring Addenbrooke’s and get an appointment with one of the nurses if not one of the doctors? If you are in this much pain, and the methotrexate isn’t working your treatment needs to be reviewed. I know it’s hard to be assertive when you feel rubbish, but please push for an appointment (even a phone appointment). If you feel really unwell perhaps a friend or family member could call on your behalf?
Hi citygirl thank you so much for taking the time to reply and in such a detailed manner. I have a lot to think about and have an upcoming gp appointment next week. I am going to do some research and get as much information together as possible. I feel quite strongly that I am not seeing the best person suitable for my condition. But want to discuss with someone who has the knowledge and does not know me and not led by previous notes etc . Once again thank you and best wishes to you.
I have just been diagnosed with Vasculitis (Churg Strauss) after several months investigate and have just started the cyclophosphamide infusions - all pretty scary! I am currently under the rheumatology team at the Royal London Hospital. How are you feeling now that you have been living with the condition for 4.5 years? Kind regards
I saw David D’Cruz two years ago for WG at his London Bridge clinic. Really nice guy. He was able to confirm that the treatment I was receiving from my NHS consultant was the right way to go.
I was really unwell at the time and the thought of the 8.30 appointment as you have was too much. So to add a bit of light to a dark situation wife and I stayed at the shard the night before. Yes it was an arm and a leg but it did the trick giving a bit of fun in a tough time. Book a late checkout so you can go back after the appointment to get your stuff and take an hour to prepare for trip home.
Hope it goes well for you. Two years down the road I am much recovered, few nagging issues and constant background fear of a flare but getting on well. I hope you get to the same point but takes a lot of time and patience.
I'm glad to hear that Prof D'Cruz was able to help you. Glad to hear he confirmed your NHS consultant had everything under control, and I'm sure your consultant was glad to hear that Prof D'Cruz approved.
That sounds like a very good way to do it. I live in East London so I'm fortunate that I don't have to travel that far. Top tip for the Shard though, if you'd like to return and not spend an arm and a leg - Aqua Shard (one of the restaurants at the top) does a very reasonable brunch (by central London standards).
I spoke to Prof D'Cruz' secretary earlier and it seems he is very popular as he is booked through till October at London Bridge! However, his colleague Dr Natasha Jordan is available, fortunately and as she also works at Addenbrooke's I have no doubt she is also up to speed on this.
I'm glad to hear that your vasculitis is under control. I'm hoping to also get to the same point one day (hopefully sooner rather than later) but am aware that it's a long road to remission. Out of interest, as your vasculitis is under control, do you have to have any regular monitoring or tests to keep an eye on it?
I replied at length yesterday but I can’t see that here. So in brief I have bloods checked at GP every 2 months and see hospital consultant every six months and ENT every six months.
Not sure what happened to your other message, maybe a technical glitch? No worries, anyway. Interesting to know, glad to hear they still keep an eye on you even though your condition is under control. Hope that it continues to be that way
Hi citygirl1234 and Adochan. I'm catcall1 and this all sounds very useful. I was diagnosed with limited GPA in January this year after seeming to.have flu type symptoms and conjunctivitis on November 2017. My GPs just gave me chloramphenicol and nothing else. It was only because I'd recently had lens replacement treatment and my surgeon there recognised my symptoms and he asked my GP to refer me for blood test, full chest xray, urine test, and got mr referred to a rheumatologist. He did ANCA tests. Full blood tests, CT scan.
My ANCA test count was 85. My CT scan was completely clear although my sinuses were completely bunged up and I had very bad hearing in one ear.
My rheumatologist was bewildered but sent me for no other tests, just started me on 8 prednisolon a day, 10 methotrexate a week. Adcal, alendronate x1 a week, folic acidx2 a week.
To date my ANCA is now zero,and im now down to 3 prednisolon a day, plus the other pills.
Apart from a lot of steroid side effects like horrendous weight gain, fat red face and swollen neck, insomnia, complete lack of energy and strength, its not been too bad. My blood pressure went crazy causing my face to baloon and my skin to go leathery and purplish and feet to swell more, so I was on amlodipine.
At the moment I am completely bunged up, post nasal drip (?) Which collects on my chest and makes me cough constantly, top lip covered with cold sores, feet swollen more and painful, two days dysentery, and this time shins and calves with strange red risen red spots.
Twice ive had this and both times my GP hasnt had the faintest. He did prescribe the blood pressure tablets the first time and this time he has changed them again and given me one course of amoxyllan antibiotics, which are doing nothing. Noone.in my surgery know anything about Weggies.
My rheumatologist said he thought none of these things were vasculitus related and just kept me on the higher dose of steroids for an extra month.
I obviously don't like feeling so rough but my biggest concern is nobody seems to know anything. Going to the GP seems a waste of time and my rheumatalogist is dead chuffed hes got my ANCA down to zero. He intends to cut the steroids again to 2 a day and I will only need to see him every few months to check the ANCA and.have blood tests for the meth presc every two months. Otherwise it seems like keep taking the pills and clear off.
Has anyone else felt this lonely and unsupported or am I over reacting?
It does sound like your rheumatologist has things under control for the vasculitis side of things which is good, but it also sounds like you could probably use some help and a bit of reassurance with everything else. Have you tried seeing another GP at your practice? Some hospital trusts also run "Patient Expert" courses or similar (the names vary) which can help you learn about how to manage your long term conditions and meet other people who also have long term conditions, so you can get more support. I would ask your GP if they could refer you to one or have something similar or a support group in your area.
If you are having ENT problems, it might be worth asking for an ENT referral, especially as GPA is also linked to some ENT conditions.
If you are taking lots of different medications or have any questions about them, it might be helpful to speak to a pharmacist, as they have much more in depth knowledge about medications than most doctors. They can also help you make sure you are getting the most from your medicines. Your hospital should have a "medicines information line" or similar, that you can call and speak to a clinical pharmacist on.
Hope this helps, and sorry to hear that you are feeling so bad at the moment
I just thought I would give an update, in case anyone was interested:
I saw Dr Natasha Jordan this morning at her clinic at London Bridge Hospital and she was lovely and very thorough - I would definitely recommend her. (I think she also works with the other vasculitis specialists on the NHS at Addenbrookes hospital in Cambridge).
My other specialists had already run all of the scans, notes and blood tests that she needed, so she just needed to review everything that had already been done as well as my medical history.
She diagnosed me with ENT limited GPA, and she seemed fairly confident that now it has been diagnosed it won't spread anywhere else as treatment should keep it under control (which was what I was concerned about as I understand GPA can get very nasty quite quickly especially wrt kidney damage). She has referred me to Prof D'Cruz' NHS clinic at Guys & St Thomas' to start methotrexate, and I don't require any prednisolone at the moment as I'm otherwise well (apart from my sinuses for which I blame my grass allergy and now the GPA), so I feel quite lucky that things have been picked up early. I still have a sinus biopsy to go, but she feels that there is enough evidence to make a diagnosis even if the biopsy comes back inconclusive.
She was also very helpful about coordinating everything between the specialists and was happy to write to my GP with some guidance for how to manage it on the GP side of things.
Thanks I'm fairly optimistic that now they've diagnosed it I can stay at the milder end of the spectrum, but I guess we will have to see. I'm certainly glad that I live in London as there are so many specialists around. Hopefully you will get some answers as well soon xxx
If I lived in London I would see Dr. Watts! Saw a webinar he gave on ANCA -associated vasculitis (GPA, EGPA, etc) by the Vasculitis Association in the US. He is excellent. Great on diagnosis and treatment.
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Thanks for the tip xx
Is there any way you can ring Addenbrooke’s and get an appointment with one of the nurses if not one of the doctors? If you are in this much pain, and the methotrexate isn’t working your treatment needs to be reviewed. I know it’s hard to be assertive when you feel rubbish, but please push for an appointment (even a phone appointment). If you feel really unwell perhaps a friend or family member could call on your behalf?
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