Vasculitis UK
5,723 members5,151 posts

Strongly Suspected Vasculitis Awaiting Specialist Appointment With rheumatology and hematology... Which form that is the question..

Strongly Suspected Vasculitis Awaiting Specialist Appointment With rheumatology and hematology... Which form that is the question..

Hi everyone,

Jeez where do I start... hmm

I've never joined a group before & I am at my wits end.. I have felt so unwell & even that doesn't give justice to how I really feel. I have always suffered with different infections kidney, respiratory, chest infection bladder Inflammatory & UTI & horrendous sinusitis, 7 years to this day I was sat at home feeling worse for wear. My skin became sore & inflamed a few hours later these lesions appeared on my lower limbs & then a few days after my arms. They became gaping holes & I suffered swelling/rashes/chronic pain/ I noticed my skin prior to the outbreak & it was glistening, small round circles all over my legs & I had no idea what they were, i thought I had an allergic reaction to an insect bite but it felt more than that, it was a deep burn under my skin, was unbearable I went to my gp & they looked confused & said I'm not sure what they are but here's some antibiotics come back in a week if it's not any better, i felt extremely tired no appetite just ate soup as it was easy to consume . I lost so much weight & look pale & gawnt. My parents became concerned & went back to the gp with me, they didn't seem concerned & didn't really help to diagnose anything & I felt like they were very judgemental but I went with it as I just wanted some help. I guess I didn't have the Energy to argue.

Weeks, months went by, no referrals no blood tests for almost 4 months after, a full blood count was taken my WBC was very low but this time no infection, antibiotic resistant.. & literally lifeless.. I begged to see someone else.. someone with some sort of compassion. The lesions become ulcers & the muscles in my legs hurt so much I struggled to walk. Bathing was a nightmare, if I got them wet they would sting like hot oil, and after when I was dry the skin would stretch & become raw & reopen so I was literally in tears, no help no creams no idea of what I could do to help myself as no one seemed to want to help me, It took almost a year to get some kind of acknowledgement, id been screaming for help & I was finally heard. I was Admitted to hospital on occasions had tests of every kind, I was told by a doctor I had a connective tissue disease..also inflammation in my bladder & lungs, I also came down with flu like symptoms, with a vile cough, & night sweats. no treatment no discussions.. I was told a letter would be in the post to see a rheumatologist I received nothing, i was at a dead end & I felt like I was dying.. In the end I was given morphine & salphodol for pain, but no adequate medication.. I thought to myself it must of been a extremely bad virus or something.. a bad bout of poor health & somehow it just went away.. it took a long while to get over it, but I did it as I had no other choice, my lesions healed somewhat but have left some awful scarring. I'm really self conscious about them now.

But 7 years on and right at this very moment its raised its ugly head & I feel terrible, this time it seems different to before. I've gone downhill quickly, I've lost a stone & im only petite anyway. I'm living off soups & build up shakes to be honest I'm not hungry at all, I'm sleeping the days away & im up all night with pain in my legs, my lesions are back & worse then ever, I have many more & my skin is glistening & sore, my arms are completely covered in tiny purple dots, & my poor legs have swelled with visible veins & a bluish tinge, I visited my GP this time with my dad, he had emailed & written to them without my knowing, & had been concerned with my health of late as I had quickly detiorated this time round, my dad mentioned a auto immune disease & they blankly agreed they checked me over & I explained the heavy feeling in my leg, and pain in my calf, I had been breathless for a few days & every time I took a breath in I had extreme pain, I was sat at home with my boyfriend when I had felt a pressure feeling in my chest, it felt like I was being crushed. I couldn't take a breath in & my jaw was killing me, it lasted for 3 mins but felt like forever. I was direct & felt some sort of control as I know my own body, I know in my heart there is something wrong, I got the same attitude the same look, but my dad pushed & pushed finally they said they would do a D-DIMER blood test, she said "its very unlikely you have a blood clot if that's what your worried about" but obviously we need to check, it's probably nothing, I was given a prescription of rivaroxaban 20mg, I was told I couldn't take them until I got a call from the hospital, it was Valentine's Day 14th Feb 2017 at 8.30pm. A consultant from the out of hours called me to say I had a blood clot my levels were high & needed to make my way to the hospital ASAP. I went with my dad as he's amazing.. direct & powerful in his daily work life so his help was most appreciated at all times, I was taken to a room had bloods, ECG, x ray for a PE. X-ray was clear, but my anticardiolipin ab's lgG 15.8 moderate positive. I had a long talk with the doctors there & I have to say I felt like I was being taken seriously this time, some compassion was there & I broke down in tears because it's taken so long just to be heard. I was told to take one pill a day, & in the morning of the 15th Feb 2017 I was taken to AEC - Ambulatory Emergency Care Unit. Wow they were amazing & such beautiful people! I had a CTPA scan. Which revealed tiny multiple granulomas & a leg Doppler scan was negative for blood clot. First degree heart block, & an episode of AF, I saw a dermatologist & straight away he said my skin lesions were a form of vasculitis, I zoned out because I was just thrilled that there could be end to all this suffering! It's been years & no one not any doctor has given me an idea of what it could be.. the word eureka!! Repeated over in my head... 🙏🏼 I met a wonderful doctor called Moses. Heaven sent ! He wrote a letter to my doctor asking for a urgent referral to haematology & demanded I see a Rheumatologist at the same time. His words were, THIS 30/yo, is waiting for a O/P rheum history of multiple joint pains, increased tiredness, paid for her own extensive blood tests -WHY? POSITIVE ANCA IMMUNOFLUORESCENCE POSITIVE ANA -speckled pattern 1:80 TITRE, ANTI Ds DNA POSTIVE & ANTICARDIOLIPIN - MODERATE POSITIVE. SPHENOID SINISITUS, URINE DIP BLOOD & PROTEIN. IMFLAMMATION KIDNEY NODULES GRANULOMAS - calcified - NEGETIVE. & TINY MULTIPLE LUNG GRANULOMAS NODULES WBC 3.9 4.0 - 10.0 NEUTROPHILS - 47.2% 1.84 RESULTS INDICATE MODERATE NEUTROPENIA SERUM FOLATE 2.0 ANEMIA. Needs Urgent appointment & review.

I was asked why my GP hadn't referred me for any tests & was outraged that I paid for my own blood tests £500 , he wanted to know why nothing had been done to speed up a diagnosis. Negligence.. & so much more at the hands of my GP. I was under his care & he's put a rush on everything! How kind!

I felt a little odd at 2am 15th February 2017 I had some deep pains in my chest that woke me, my leg was very heavy & I just felt strange. The only way I could describe it as something was moving up my neck.. & then I lost my superior vision in my right eye. Felt like a shade had be pulled down over my eye I couldn't see all I had was a small faint line of washed out view. It was so scary, no pain just loss of sight. I went to see my optician who did a few tests.

His words : reading from a letter

Single episode of loss of superior vision, sudden onset, with deep chest pain, needs monitoring no episode since.

Investigations for vascultis needs urgent attention

Benign hypermobility syndrome possible Vascular EDS??

Hx of Migraine & raynauds & Vascular Dysregulation, check endothelin levels?? Suspected TIA

I have had a recent consultation at the stroke clinic, classed it as a suspected TIA & to continue with my blood thinners.

I've been given folic acid for my anemia which doesn't seem to be helping referred to ENT For sphenoid Sinisitus, & I have recently been for a oral cancer check with my dentist & I have 1 benign tumour & 2 abnormal that need a biopsy.

Recourring mouth ulcers & abcesses.

Seeing the rheumatologist on the 11th April 2017.. first inital app but I've waited years ! I have so much Love & appreciation to AEC they have done more for me in the last 3 weeks then my doctor has done in 7 years! I feel lucky.. it's taken it's toll on my whole body from my eyes, throat lungs heart bladder kidney limbs, I'm now suffering with the migraines but I feel like things will be ok from here.. I've suffered in silence for a very long time & I feel glad that I'm being recognised & treated like a human being. If anyone out there knows of what I am going through please please reply, my family & partner & son are very supportive but it would be a blessing to hear from a soul like mine. Thank you for taking the time to read all of this it means More to me than you know. X

32 Replies

And they are calling this a medical system ?


Hi Laura

Why does your story not surprise me !!! Medics hate all the vague symptoms that don't quite fit in the boxes ..... the 'here's what I learned at medical school' (however many years ago) boxes !

The specialisms like Nuerology, Endocronology, Rheumatology, aren't always able to be exact and possible answers don't always exactly fit a set of symptoms. Their suspicion of Vasculitis could well be right. You're wondering, which bit of me is the root cause. It could be several forms of Vasculitis coming from several areas ?

That's the big Q - it's hard to diagnose !

I have found when they can't quite tick the boxes they either fob you off or dig a lot deeper .....a good GP will admit they don't know what it is ! A good Hospital Dr. will also admit it and filter you elsewhere.

I'll not tell my whole story, I'd be here all day, suffice to say I too am eventually seeing Rhuematology now for possible Vasculitis. I think it's probable Nuero Vasculitis. I believe,after much research, it's SVD (small vessel disease) Yours could be coming from a number of places or small vessels, large vessels, who knows !

I'm already seeing Nuerology but Nuerologist and Nueroradiologist don't agree on MRI findings (including Vasculitis) I'd a brain biopsy on the largest of the lesions and pathology still couldn't definitively diagnose Vasculitis ! (The Nuero surgeon doesn't agree either btw) I've several other bits of me suffering from autoimmune disease too though. The specialists don't often join up each other dots that's one of the problems.

I'm sure you'd love to see someone who would treat you a a whole person and not in bits and pieces ........I'm still looking for that magic Doc You'll be the first to know if I find him/her !

I'm also seeing an Endocronologist for Hashimotos Thyroditis and regular biopsies. I honestly believe it's all interconnected and I imagine yours is too. Vasculitis anywhere in the body is a result of an autoimmune response and you've antibodies present too so......

I too am exhausted being my own detective ..... with no diagnosis there's no prognosis ! My GP thinks I should see a completely different Nuero team in London to see what they can come up with ....I'm working on the logistics/travel/cost of it.

I do so hope you get some answers and the right diagnosis. After that it's a matter of adjusting life and mindset to live with it all ....that's one of the hardest parts !

Could I add one more thing - have you tried coming off the main irritants to Autoimmunity wheat,dairy, alchohol ....there are many more. It's worth a go, it definitely helped me. Boring, but a change in symptoms was worth it !

Good luck with your Consultations I'll be thinking about you ....and hoping you feel at least a bit better soon

S 😊


Hi Susan mac

If you are wanting a neurology second opinion on the possibility of CNSV then I can recommend Dr Desmond Kidd at the Royal Free in London

He is our " go to " Consultant when it comes to CNSV.

Dr David Jayne and the Vasculitis Clinic at Addenbrookes Hospital in Cambridge are excellent as well for a multi disciplinary approach.

I hope you manage to get a definitive diagnosis soon.


Thank you so much for the Ref.

I think I'd need to come to London for about a week to fit in all the specialists I'd need to see ....check out all the cross overs I'm sure there's bound to be !

1 like

Hi again Keyes I forgot to ask if you know if those Refs see Private patients ?


Dr Kidd sees patients privately, Addenbrookes don't.

Unfortunately CNSV us a particularly challenging diagnosis to make as it has many mimics and is very rare ( 1 case per million patients ). That's why it's so important to see a Consultant with experience in it.

You are welcome to phone or e mail the VUK helpline if you would like to talk things over, myself or John will help in any way we can.



Thank you so much !

I've read lots on the VUK site but it's even better to hear first hand.

Yes I did know CNSV is rare - I've a feeling mine is small vessel cvns ....even harder to diagnose !

I'm a terrier with a bone - I'm not just going to accept a 'non diagnosis' Life is too important to always have that "maybe it's ..... ? " on our minds !!!

Onwards 👍😏

1 like

Wow thank you Susan, I didn't think I would receive any replies but I'm so greatful !

What a nightmare.. so many people in this world suffering from this..


My doctors especially have now admitted they haven't done enough to help me over the years. Despite not having a diagnosis, I'm going ahead with Suing my doctors Surgery. I've spoken to a solicitor.. & requested my medical records from 2000 till now. 2017. Its barbaric how something can manifest itself & completely destroy your life, & when doctors patronise & judge it's very disheartening, I was taken into hospital Sunday 19th march 2017 @ 8pm as my head felt as if it was put in a vice & squeezed. The lady GP was Nigerian & so compassionate she made me cry.. she was disgusted by the way I have been left, & that I should demand my appointment to be pulled forward. You asked about cutting out wheat etc. I do smoke. Cut down from 20 to 2, as my breathing is bad. & now with my lung nodules it's a bit of a wake up call. I don't drink alcohol, & the only thing I have been eating the last few weeks is soups, I have this thing called magic mashed potato, if I feel unable to eat solids, I have buttery mash mixed with spinach carrots sweed broccoli & gravy. That way I'm getting my 5 a day :)

I haven't seen a neurologist or any other specialist just yet. I have spoken to the rheumatologist as I am now going private, I was told that they would like to do some tests on my bone marrow etc. Sounds daunting but I need to get this sorted. Thank you & I hope you find some relief & reassurance sooner rather than later. X


Hi Laura you'll see from the time of writing Immnot sleeping (just another problem)

Anyway.....well done you on the cigs from 20 to 2 !!! My sons, who both smoke, informed me today it only takes 5 years from stopping to reverse all the damage done ! I didn't argue was Mothers Day ! I think they're kidding themselves 😫I've never smoked ( Brittle Asthma, Bronchiectasis, Lung lesions) but I can imagine it's a very hard job quitting such a powerful substance !

Trick with mashed spuds - beat in an egg yolk and you'll get some protein, the hot mash will cook the yolk.

Have you checked out the possibility of cluster headaches (vile things) or Trigeminal Neuralgia ? Just a thought Q to add to the list 🙄

Bone marrow test is a lumbar puncture and is the definitive test for many conditions .....except mine ! Even a brain biopsy couldn't define a diagnosis for me ! I'm a mystery woman !!!

You've lost all faith in medics, they're are good ones, it's just finding them is difficult. Your 'history story' is like mine in that it's very long, detailed and protracted making for a difficult puzzle .....they don't always have interest in solving it 😑

Take care not to "demand" - in my experience it's best to be quietly assertive rather than aggressive - it'll only back fire on you .....with all the staff not just the Drs.

Caution too with the Private route. It's often not the panacea you hope it will be ....not always all the answers, just differing views ! Often too, the reports/records/notes don't transfer to NHS so it's the whole story again in you present at A+E Ask for copies of all your Private consultation notes and bring them with you to NHS appointments. If you need CTs or MRIs get these readings on a disc too.

I'd keep a hand in with the NHS. That way they know all about you .....EPR (electronic patient record) is available instantly and covers all the records of all the hospitals you've attended in your area .....well, it does in my area, I'm not sure if it's nationwide ? What I do now is accept the GP referred Nhs consult but go Privately as well ....Bupa are very good at covering me but for any one health problem you only get two goes two different Specialists.

Your Private options can quickly run out. I don't know if you've insurance but it can become v expensive if they decide not to cover you ! I've just had so many Private appointments and made so many wrong choices I'd hate to see you do the same. Some have been good I have to admit the end of the day, like yourself, I've still no answers 😩

Keep well and good luck with the next appointments. It's so hard to be strong when you're not well's exhausting !

S x

1 like

Have they ruled out EGPA for you if you have asthma?


Ah .... EGPA ?

Just when I thought I knew it all !


Ah ....I've looked it up !

Here we go another thing to research now 🙄 It's probably unlikely but ya never know

Thank you Keyes for your reply. You're very kind taking the time.

Susan 👍

1 like

Hey Susan, thank you for the heads up, I'm sure to take that advice on board. I think I sometimes speak from a place of pain & exhaustion. I will go to any appointment with the right attitude as I don't want to be turned away. I'm not educated enough & I think I need to brush up on my tactics towards my GP. I have mentioned a few things that I've researched & I am always polite, i just need a conclusion as I'm stuck in limbo. A bit of help is all I want. But it's a lot to ask if your a complex case.. mystery woman sounds awesome.. but it's such a shame they cannot connect the dots. I'm a bit nervous as to what actually happens on your first consultation with the Rheumatologist ? Is there anything specific that I should ask ? X


Oh gosh I'm not sure 🤔

Looks like I'll be going to one before long though as GP thinks I've developed Rhuematoid Arthritis 🙈 Whadayaknow .....another autoimmune disease !!!

Tactics hmm ....sometimes it's better to just remain silent and then when they assume THEY are done you hit them with the No hold on IVE got questions!

Write notes while they're talking as you're bound to forget things. Better still ask Mum/Dad/sister/partner/good friend to go with you and write the notes. You can then refer back to your 'secretary' for an answer to each point the Consultant has made.

I don't think they're all bad y'know ....I just think sometimes they can't be bothered talking ! Most of mine - Gp, Neuro team, Respiratory, and Endocrinologist got the message very quickly that I was a person who needed to know ALL THE FACTS .......because guess what it was all about me !!!

Remember YOU are the most important person in that room/surgery not the doctor or Consultant !!!

YOU are the one who's doing all the life changing suffering ...... so there 😉

Good luck 👍

Susan x


Dear Laura. I have read your story,partly in disbelief aswel as unfortunately being all too familiar with the lack of care from Doctors which you describe..I am so very sorry you have had to suffer so much for so long, and I truly hope that now you will get all the help, treatment and care that you deserve..

Although I can not confess to have experienced all of your symptoms, I have myself suffered and struggled with severe symptoms and incapacitating illness that has caused some disability, for over 10 years..

My initial 'flare' of symptoms caused terrible respiratory illness, and after an MRI showed brain lesions I was diagnosed with MS, but as I worsened and a lumbar puncture proved negative, it was retracted. I was diagnosed with Fibromyalgia and left, getting worse and more disabled..As time went on,symptoms increased -some of which you describe- and I had various blood tests that were normal or borderline.I developed kidney and bowel problems, admitted to A & E more than once, and given different labels of suspected individual conditions..But pains and some symptoms usually being put to Fibro or 'unexplained'.. From my Fibro knowledge I doubted it was all due to it, and wanted to know about the 'unexplained', so I asked my GP to refer me to other specialists which she did..But having an existing diagnosis meant rheumatologists didnt search for anything else and began judging me, this itself became demoralising..

In 2015 I was so ill after a 'flare'of various symptoms, and developed sudden new pain in my ankle with a frozen leg and feint ankle pulse. I was an emergency once again and it was taken very seriously by a GP.However, the rheumatologist I got referred to did not want to connect any of my symptoms and only diagnosed tendonitis/ tenosynovitis in my ankle. Once again left,desperately ill and now unable to walk and I later developed a drop foot..I knew I had to take matters into my own hands, do research and push for a result..

This lead me to VUK for help. With additional information I asked my GP to refer me to a named rheumatologist, but unfortunately they turned out to be unavailable and I saw a different 'Supposedly' knowledgeable one in vasculitis but they weren't. It was also a Lupus centre - a suggested condition once by one Doctor- and although the consultation wasn't ideal and the Doctor initially tried to put all down to my Fibro diagnosis before she examined me or did any tests. I showed photos of rashes etc and she had a different view😉.. I was told I had Hypermobility and 'some vasculitis' -and she confirmed Fibromyalgia which I knew already😖- It threw up more questions but I told her about my son who has similar symptoms,and she said he needed a referral as he will be affected also with the Hypermobility, EDS..

So I have researched and researched!..If I could leave it and live my life not having to see consultants for answers I would!! But like you know, when you are so ill and incapacitated, you have to push on for answers that will hopefully lead to treatment so you can live a half decent life!..

I recently saw an actual specialist in Vasculitis, it was a very good consultation and I have posted the outcome on here..My symptoms are a mixture of conditions.. and I was told they don't fit any one vasculitis condition..and that vasculitis is 'unlikely'.. The conditions I was told I have, do fit some of my awful symptoms and this was very helpful to me,although I have yet to see about possible treatments..They also fit in with Ehlers danlos syndrome which is a multi systemic condition..So my next appointment -along with my son- is with a specialist in Hypermobility EDS.This is at the other end of the country and a private consultation, as I learned only a specialist can diagnose EDS. This is also the case with vasculitis. A general rheumatologist can not diagnose these conditions, they don't have all the knowledge, so you have to see a specialist Doctor.

You have come a long way in your 'journey'. It can sometimes take that one doctor to recognise symptoms in order to kick start a change towards help and treatment. I compare it to 'looking for a needle in a hay stack'!.. I can relate to your heart felt appreciation of that one Doctor and the help that followed..

It seems that complicated, cross over conditions with multi- system symptoms are difficult to diagnose, and GP's and general specialists fail to make a connection to a particular condition/ disease, especially when it is rare..and we are just left rotting..So we have to take the lead.

I really wish you all the very best. Someone knowledgeable in vasculitis will reply to you, they're very supportive, helpful and kind.. You could also join the EDS health unlocked, everyone there is knowledgeable, kind and helpful also and will know about vascular EDS..

If you want to chat or ask anything else you think I could help with please feel free to message me.🙂 xx

1 like

Hey tillyray 🌟

Thank you for replying to me, it means so much. I'm sorry to hear your so poorly too & left in the dark Aswell. Life is a beautiful disaster!

Whilst Reading your story I had a tear & many followed, it must be so difficult for you, in a way finding VUK has saved me in some ways. I was so desperate yesterday & I needed someone to talk to, it's very lonely being unwell but also makes me quite low lately because I'm the only one in my family of 5 that has this. My brothers are 29 & 23 & they are fit & healthy. Just makes me feel like crap. You seem a lot like me, it's exhausting & expensive being pulled from pillar to post. & not really finding solid ground. I'm 30 & I feel like 90, I've been in bed today & I thought about my post I had written last night, & normally I'm very reserved but I'm so glad I didn't hesitate to send it. I think we're all battling are own unique war & no one not even GP's have a right to mock a pain that they haven't endured. If you ever want to talk please inbox me, I have lost many friends due to being so unwell the last few weeks, but a true friend in need is a true indeed. Take care of yourself & I hope you find the help & treatment & most importantly a diagnosis you so rightly deserve x


Dear Laura. Thank you so much for your very kind words🙂. I can totally relate to all your emotions, as I am sure many can. I will definitely contact you and please do the same. Very best wishes xx

1 like

Hi Laura,

Your blood results are very mixed ( you are positive for some of the Lupus auto antibodies as well ) and it's all obviously very complex.

Are you in the UK? The most important thing is to see an appropriately experienced Consultant who can make sense of all of this. Unfortunately not every Rheumy is equal when it comes to Vasculitis and Lupus.

VUK have a helpline that you can e mail or phone for a chat and hopefully we can point you in the direction of a Consultant with excellent knowledge.

There are over 18 different Variants of Vasculitis and as you have mouth ulcers Behcets should be a rule out as well.

Best wishes


1 like

Hi lynn, yes it seems systemic.. I think that's the word🤧

Yes I'm in the UK I live in Cheltenham Gloucestershire. A helpline seems like a godsend & thank you very much for your advice & your help is most appreciated.

I'm grateful you got in touch.

Many thanks



Hi Laura,

All systemic means is that you have symptoms throughout your body and not localised to one area such as the skin, it's not a diagnosis as such.

I am sorry to labour the point about appropriately qualified Consultants but the experience of the Dr you see will be the single most important thing towards getting a diagnosis and effective, evidence based treatment.

I am not sure that there is anyone appropriately experienced near you and would recommend that you ask for a referral to one of the large multi disciplinary Vasculitis and Lupus clinics such as Birmingham Queen Elizabeth Hospital and Prof Lorraine Harper.

You are likely to need multi disciplinary input and multiple tests so seeing someone privately may not leave you any further forward.


Thank you Keyes, your right. I think by going private I'll pay for the care that you think you deserve but it doesn't work like that does it. & I guess because I've not had any treatment or indepth examinations or extensive tests apart from the bloods, I'm just a needle in haystack. I think travelling as you said to another hospital is a good idea. & im sticking with the NHS Appointment in April. I really cannot Afford any more private care. Thank you ever so much x


I was so saddened and angry at the lack of gp intervention after your long journey of getting anything done and finding a diagnosis. I really feel for you and wish you all the best with your treatment. Your dad sounds amazing and like you, I don't have the energy to fight. I am still trying to get a diagnosis.

Take care of yourself and thank you for sharing your story. You really have been through it.

Best wishes

Suzy xx


Aww hey Suzy, Thank you ever so much, it's nice to have another appreciate what I'm going through & I also have the greatest respect for you, aww my dad has been my statue of strength through all of this, & our bond has become so much stronger. I'm very good at keeping things private but this time I need some help & I can't bare to go on feeling like this anymore. I've Carried this for a long time and I'm looking forward to some sort of outcome, & a better quality of life. I wish you all the best & if you ever need to talk please just message. Thank you x


So many people on this site (including myself) have had to battle with GP's to try to convince them you really are ill. Your personal battle sounds like its been a monumental one. I do hope things start to improve for you from here. Keyes is absolutely right that not all Rhumys are the same and you do need to ensure you see one knowledgeable in Vasculitis and/or Lupus, even if it means having to travel. Good luck.



Hi Chris, thank you from the bottom of my heart. Yes the battle is yet to be won. I think the money I saved & spent on private blood tests has got the ball rolling & I hope this first appointment with the Rhumy will lead to better things. I'm not expecting a miracle but all we can do is hope. I would travel the earth :)

Many Thanks 🙏🏼



Hi Laura I live near Cheltenham too and I'm under the renal vasculitis team at Queen Elizabeth Hospital. I attend the Oxfordshire support group and if it hadn't been for them pushing me to get a second opinion I doubt I would be here today. Despite my diagnosis of GPA by ENT at Gloucester Royal, I was placed under a chest specialist due to lung involvement. Unfortunately he had little knowledge or interest in vasculitis and I took 3 attempts before he referred me. By then my anca was off the scale so I think myself very lucky indeed to have found the support group.

I hope you get seen very soon by a vasculitis specialist and your treatment goes well. Best wishes.


Hey ludo,, ahh wow.. seriously. Nice that you responded! I'm just a bit stuck, & im aware from what I've heard that doctors in CGH are not specialised in vasculitis. But if you've had some sort of help there is hope. Thank you so much for expressing to me a piece of your journey so far & I hope your holding up ok, & your treatment & team are good to you. It's nice to talk to someone close to home & knowing Birmingham hospital is only across the pond makes me feel a lot better.

Take care of you & keep me posted please.

Laura :)


Hi Laura,you poor poor girl.....what a dreadful couple of years you have had...I was eventually diagnosed with Wergeners Granularmatosis after mths back & for to Drs,,,,caused by flu injection....a known side effect...this was in 2011 am still seeing Consultant every 2 mths in the Hospital the ANCA test is very important in my case (level of Antibodies)levels are down at the moment but I dont think I will ever be cured...lungand kidney damage too.....hopefully with you they will now get on top of your condition and will start making a recovery

1 like

Hey ehughs, Thanks for replying , gosh I know 😞 It's been awful.. I really appreciate your kindness may I ask what tests they did to help diagnose your vascultis? & how are you coping on your treatment? Me too, I'd like a little bit of my old life back :) x


I was on 80mg Prednisolone(steroid)am now onm 5mg..did come down to 1.5mg but had a `flare`again in June last year...aso am on Cellept(mycophenalate mofetil)750mg daily have been on that since the onset of the illness,also Calcichew.....numerous blood test,sputum tests due to blood in was the ANKA test that was the most important test and the most revealing re Antibody levels xx

1 like

Hey 07752152841

Sounds like your going through the wars too.

I still haven't had a diagnosis but I will find out this Thursday. Vasculitis U.K. /health unlocked has literally been a life saver.

I too was stuck waiting for appointments to land on my doorstep, years of being thrown from pilar to post & not really getting anywhere. As you can see from my first post to last I'm finally on the move in the right direction.

Before all this knowledge of Vasculitis came about, I was sat at home 7 years ago with lesions on my legs that turned to ulcers extreme weight loss, no appetite, joint agony, swelling of my limbs, complete exhaustion, rapid heart palpations, chronic sinusitis, vision problems, headaches the list in endless. I went to my doctor who only prescribed antibiotics, I took so many that nothing worked. I was always sent away so I tried to get better myself. It took a while to get back on track but I've never been the same since. So when it all started up again at Christmas 2016 I've just been on a downwards spiral ever since.

I haven't been on steroids. Only for my asthma that's been considerably bad since this all flared up, it's been under control for years.

I've never received any form of medication treatment.

So I am going to be open minded & hope they can give me something. I've got by with painkillers but it's just masking the problem I need to get to the root cause.

I can relate with horrendous legs. I've recently being looking at scar treatment ! But it's tooo expensive so camouflage makeup is good enough.

I am glad I went privately for my extensive bloods.,

I waited years for my doctor to do them & they never got round to it. It's helped me get to the point I am at now.

My specialist is amazing at Queen Elizabeth's Birmingham Hospital. She's been so thorough with all my bloods. Booking procedures, getting everything I need to have done sorted in a week. She's brilliant !

Maybe if you ask your GP to refer you to a private rheumatologist. & go from there. Or a specialist in Vasculitis. Thanks to some lovely people on this site they gave me some names of some lovely specialist so in the end my doctor referred me on the NHS.. the private route would of got me in debt.

As I've found out recently, all hope isn't lost, and I am glad to know there are doctors out there who want to help.

It's horrible suffering all the time & not knowing the outcome.

Despite there being no cure for Vasculitis treatment like steroids can help you, I will try whatever they give me because I've spent my life on nothing & not getting any better, so if I can have something like steroids that will help give me a better quality of life than I shall try. Despite its scary side effects Anything has to be better than how I feel now.. :) it's a risk we have to take to feel a human again.. :)

I hope you find some answers xx


Just to add to the mix - I spent over a year at my respiratory hospital telling them it “wasn’t just my asthma”. I was told I and eosinophilic asthma. I had never been asked anything else about Sinus,GI, skin, nerves fever,swellings And after paying to see a cardiologist I we referred to the Brompton for a holistic view of “me”.

Finally I was listened to and after describing by cardio vascular symptoms and a whole heap of tests I was originally told I had eosinophilia pneumonia. I week admitted on IV steroids, they advised that I most likely have anka negative EGPA. Finally someone listened to me. Sent back to my local hospital and spent 10 months trying to “prove” the diagnosis! Very frustrating but I have learned that it’s best to focus on the treatment rather than the label. My lungs are more affected than anything else, although vascular damage on brain scan , visual disturbances, skin problems, regular UTI’s and many other things still being looked into.

I was due to start Azathioprine yesterday but was too poorly with what consultant decided was a chest infection (I think that’s unlikely by taking 10days on antibiotics)and been to 40-50mg pred for three weeks.

It is very frustrating but I find by being well read and trying to understand what’s going on I can stay sane. Eosinophils still all over the place on steroids (between .7 and . 2 on blood tests. My only concern is Brompton advises that eosinophils should be no more than 0.003 yet my consultant seems happy to keep them in the “normal range of no more than 0.67!

Anyway, moving on and hope the Azathioprine will make a big difference!


You may also like...