No matter what way I turn I keep hitting a brick wall! After waiting 7 months for an appointment I am now being referred for testing for UV allergy!!! Whilst the sun can be my enemy , the doctor I saw didn’t listen to any of my other symptoms as my bloods are normal.
Please can you share your experience and offer advice, I can not cope with this. 14 years I’ve suffered , the past 4 have been a living hell. I’m open to the uv testing as it will be something else ticked off my box, but it just means more months are suffering.
Look forward to hearing how you got your diagnosis. Lisa
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Speak to someone on the helpline. My bloods were nearly normal. With some types of vasculitis bloods can be near normal. It may even be worth paying to see a specialist privately but only one with considerable vasculitiis experience.
I’ve got to do a 24 hour urine sample. I guess this is something different . I have so many symptoms and showed photographic evidence yesterday at the appointment . I get a lot of nose sores and symptoms worsen with hormones. Just feel tired of trying to be heare x
Don't blame you; nose sores and bloody scabs are a key symptom of Granulomatosis with Polyangetitis (GPA). As Amy said, call the helpline and ask to Be referred to a vasculitis specialist.. They most likely have been looking for for various inflammatory markers. Are you on Prednisone?
Yes I am on Prednisone, but I’m only to take them as needed, my doctor will not agree to me going on a daily dose. I have contacted Vasculitis UK and they havre been most helpful. I have many photos of the sores in my nose, always in different places ! X
Hi there fortunately for me I was diagnosed through my bloods but I went to hospital with a swollen leg at first thought it was dvd my problem now I've got a clinical diagnosis but my kidney biopsy came back negative so I'm only on steroids waiting for biopsy of nose now so not much help I'm afraid but I did have antibodies for vasculitis so my doctors are a bit petered best of luck glen
Hi. My bloods were and still are normal except for vit d. I'm also ANCA negative yet have vasculitis. I had sinus/nasal symptoms and a rash on my legs. Have you ever been seen by a consultant with vasculitis experience? If not, you could contact the vasculitis helpline, have a chat as they are brilliant with their advice, ask if they can advise you of your nearest specialist and then get a referral. I don't know if you already do, but keep a diary of events and a photo diary of rashes etc, ready for your appt. Vasculitis should be looked at as a whole picture and not just results of tests. Good luck.
I get nose sores , burning nostrils . Burning rash on face, legs and hands. I’m also loosing my hair, severe aches in my feet. I actually messaged the vasculitis page yesterday to ask which way I could turn. I saw a rheumatologist privately anc he wrote back to me with a possible vasculitis disease. That was all ignored yesterday . I wish people could just see past the bloods 😔x
I'd give the helpline a call as it is easier to chat to someone than message. They are a mine of information, so calming and Yelp you process your next steps. It's only a little step but Vaseline or coconut oil on a cotton bud applied inside your nose as often as you like, is extremely soothing. Please ring the helpline.
In the medical academic literature, there are articles about bloods inconsistent with suspected diagnosis. It also can depend on the laboratory; not all blood tests are accurate either; doctors need to do their homework, and open their minds.
I have PMR and GCA , but my Sed Rate and C reactive protein are normal; excellent doctors go by symptoms when there are mysterious inconsistencies.
Question: When you do take steroids, do you feel better?
Bloods were and still are normal for me! But a kidney biopsy identified the issue following on from a urine test. Recently they have also been looking at liver function and measuring vit d. Both are abnormal but have never been looked at before. It took me over 2 years of visiting consultants before they found these out. In the last few months I ask my GP surgery for print outs of my results and was surprised at how little variation in tests they had done previously. Ask for yours. Read them. Learn what they have been looking at and for and ask questions. It pays to be inquisitive. I don't expect my doctor to know everything but I do challenge them to tell me answers so I can understand as much as possible. Good luck x
Also just on the sun allergy thing... Has anyone mentioned lupus to you? I have a constant facial rash and despite being diagnosed with hsp vasculitis my GP is going to get me tested for lupus once I finish this medication as the medication can cloud the results of that blood test apparently. Sun can be a trigger for lupus.
I would say I show a lot of lupus symptoms. But as bloods are normal they won’t follow this up!!!! I only react bad in the sun when my hormones spike. The doctor yesterday was not interested in my hormones just the sun bit. I’m going to do a 24 hour urine sample as they requested. Just getting to a point where I’m loosing the will to live, my palms are bright red and covered in a rash which I showed yesterday. Apparently it’s the sun? But I have no rash on the back of hands which is the big that is exposed!!!!
Have you had a rheumatologist look over you? Sounds like you Def need a consult with one. Have you given the vasculitis helpline or the lupus UK helpine a call? They are excellent and really helped me when I was struggling to know what I needed to ask the doctors. They might also have some info on lifestyle and environment changes you can make in the interim before someone gives you heavy dose drugs? I have so much empathy for you. It was horrible when I thought no one would believe me. Those walls hit hard when you meet them
I paid privately to see a private rheumatologist, he asked me all the right questions. But my bloods are not supporting the theory. Highly frustrating. Thank you for your advice . I’m definitely going to ring the vasculitis helpline. The longer this is going on the worse my symptoms are getting
I don't know why these specialists do not realize that normal bloods are present in some people who are ill with vasculitis, and conversely as well . My new rheumatologist sent my bloods to more than one lab; results different . This is what happens. And doctors have lost their ability to look at the whole person.
When I was being examined by a vasculitis specialist, one of the first thing she was looking for was a scabby nose and sores.
We all do appteciate your frustration, really. Someone will post the hotline for you.I live in the US so don't know it off the top of my head.
Hi, have you had any biopsies done? I was diagnose from a skin biopsy from the persistent rash on my back, I get rashes else where like legs, arms and a few on my cheeks but the back is by far the worse. The skin clinic had been treating it as hives and an allergy but after being on a double dose of Fexofenadine (360mg daily) for about 2yrs with no change they went down the biopsy route. Thats when all the blood tests started lots of them, they showed abnormal results for 4 including b12/folate deficiency, 2 markers on DNA and c-anca that goes from positive to negative and back to positive, it seems to change at will.
I also have had camera's in 3 place's the sun don't shine, x-rays, a scan and CAT-scan because of abdominal pain's and blood in pee on a number of occasion's. They haven't bothered with the chest yet thank god, as I have late onset asthma and COPD. Nor have they started on why I keep getting pains in toes, spasm's in toes with no pain and sometimes one foot drop's down and can't be raised back to the normal position for a while.
So I've been diagnosed by the skin clinic as having Urticarial Vasculitis but rheumatology say Vasculitis but have held back from saying which one.
Rheumatology have been talking to a specialist at the CTD clinic, so am now waiting to find out what they think when I go back in the beginning of August.
All the best in trying to find out what's going on.
Hi Lisa my churg Strauss diagnosis was through bloods taken during an allergy test at hospital. The allergy reading was sky high. The respiratory consultant who organised them wasn’t planning on seeing me for 6 months but I was admitted after being in extreme pain and referred to A& E through my GP. They then referred back to the blood test and diagnosed me. I’m under rheumatology. Good luck as it is awful when you feel so ill and they can’t find out what is wrong
I’ve had allergy bloods taken during a flare and complete allergy testing, all come back normal . I’m at that point where I wish for something to show, so that all this can be explained. I feel so rough most of the time now, i dont see much point in even waking up. A broken bone is easily to see, these diseases are cruel in so many ways. Sorry to sound so negative
How was I first diagnosed, you ask? I'll tell you, I collapsed in Central London and someone- to this day I have absolutely no idea who- took me to University College Hospital. I was being violently sick, so I'm told, and was given, round about, an hour to live. VERY fortunately, for me, a 'Passing Doctor'- it's Teaching Hospital- recognised my symptoms and began treatment. That was twenty-one years ago, this month.
Since then I been on Dialysis, for four years (again almost exactly) before receiving a Kidney Transplant, in July 2013. I now live in Supported Accommodation which means, in my case anyway, that there is always 'Someone' available 24/7, should I need assistance. The Staff will also accompany me should I wish to 'Go Out', into Town, for example. Anyway enough about ME- YOU were the one asking the question!
Have you contacted Vasculitis UK, our 'Sister' organisation? If not it might well be worth your while. Both organisations are 'Run' by John & Susan Mills along with Jann. There is a VERY great deal, of information, available there including the 'Road Map To Vasculitis'. You can view it On Line or request a copy, there is however a charge for this. (I believe that the Download is free)
Have tried approaching Dr David Jane's Team, at Addenbrooke's Hospital Cambridge? Dr Jane is an Advisor, to Vasculitis UK. He is also the leading Expert on ALL matters Auto-Immune. Despite having an excellent Consultant, at Ipswich hospital- Dr Andi- I have opted to remain, under Addenbrookes for annual 'Check Ups'.
I hope that, at least, some of this has been helpful, to you, Lisalou. it only remains for me to send you my, indeed all of our, Best Wishes.
Thank you for your reply AndrewT. Hearing your story makes my issues seem so less important.
I’ve actually contacted Vasculitis UK on the advice from this page (thank you). It makes me so sad that I wrote a full list of my symptoms for the doctor to go through and they were ignored. I had a positive response from Vasculitis UK which I’m so grateful for.
Only I am sitting here thinking how much longer can I live with this. Since January my body is screaming to me to get help, symptoms have multipled, some times I panic because I can’t swallow, my hands feel numb and I can’t pick things up or I drop them. This is just a pinch of the symptoms but the ones that scare me the most.
I really need respite from it 😢. Sorry to be so negative at this time. Thank you so kindly for your reply
First of all, and I think that it's important to point this out to you, we ALL get Scared by our symptoms, future prognosis and our 'overall' Condition. However we are ALL still ALIVE, despite our all of this. Equally, rather like the Communists might say, no-one is better, or worse off, than anyone else- we are ALL Fighting this Awful disease together, hence this Support Group.
Finally, and I hope that this Does help, try to remain positive- for a start you will feel better, that's a Promise. I know that sometimes (often?) it hurts and, there are times, when 'Nothing' seems to bring relief. I have Strong Faith and, at these times, I turn to Jesus- I'm not saying that I don't do so often anyway, you understand. I don't want to 'Bang On', about Religion, and risk driving you away but maybe a 'Chat' with the local Vicar, Father or Rabbi?
What disease do you think has been the cause of all your suffering? Better to let us know your symptoms to get a good response. Just to say, bloods can be normal, and you can still be ill. Symptoms and blood tests do not always match up. You will see that come up a number of times throughout this website. If you give us a little more information, the group can help you more.
The list is quite long but reoccurring burning skin rash, mainly on the face but has now spread to hands and legs. Extreme fatigue before rash shows. Spike in hormones causes a more vicious rash , and if in the sun during a spike the rash is more aggressive.
Burning pains in soles of my feet and pain in the calves. Red palms which become more red during a flare and covered in a rash. Hands sometimes are swollen, numb or pins a needles. Lack of bladder control during a flare. Nose sores and excess mucus in the nose. Chronic sleep deprivation , hair loss , receeding gum lones. Most days I feel like I’m in a sedated mode. I have good days, which I make the most of. These are some of my symptoms, and sometimes I can’t swollen . X
Are you on any medications , either prescribed or over the counter? Are
you taking any supplementation? Looking at some of your symptoms, not all, you could have some nutritional deficiencies.
There are blood tests for that; your national health system might not pay for it, but you may want to see a nutritionist who offers these tests.
My daughter, shortly after having her baby had symptoms like hair loss, rashes, etc.and she had several deficiencies which were corrected with supplementation with the missing nutrient.
By any chance, if I may ask, did you recently have à baby ?
I have 3 children. After the birth of my 2nd child in 2003 I become unwell. They never found the cause. Then in 2013 I fell pregnant again, and all the rashes , fatigue everything just disappeared. It was heaven, I was hoping the new dose of pregnancy hormones had reversed it. Approx 9 months after my son was born , it all returned, but more severe, it has progressed some what since it all started again . I’ve been all around the houses to get help, even some health place where they plug you into a machine and the machine reads back what is wrong, a place where you hold different elements in your hands and they see how your muscles respond to it. I know it was prob the biggest waste of money but I’ve been so desperate to just get some respite.
I’m currently taking vitamins c & d and predislone at the onset of symptoms. These help and stop me getting to the point of uncontrollable burning but my doctor will not prescribe a daily dosage
I have been living with RA and Lupus (SLE) since 2008, but was just recently diagnosed with HUVS after suffering life-threatening swelling, hives, and extreme pain since January of this year, 2018. The first time I had an episode, the ER doctor said I had an anaphylactic reaction to Rituxan I was taking for RA. From January to May, the swelling, flushing, and hives continued to worsen, and I actually went into cardiac arrest and showed signs of a stroke because of the unrelenting swelling. Finally, in May, I went to an immunologist who ran very in-depth blood work on me. It was after the blood work results that I was diagnosed with HUVS. My immunologist put me on Xolair injections. It’s been 3 months since I’ve been taking Xolair, and I’m finally noticing a change. The swelling and hives have gone down tremendously, however, I still get flares. I am also in the process of weaning off prednisone, which has been extremely difficult. I am taking it one day at a time, though. I hope this helps you.
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