In May 2011 I had a terrible rash on both arms which was very itchy, red and spotty which when scratched joined together. Several visits to my GP surgery finally resulted in being referred to Glos Royal Hosp and I saw a dermatologist who said you have urticaria vasculitis. Full blood count, high dose steroids, antihistamine and a biospy later and thought OK at least I now have a diagnosis. In July when I saw him again for the results he said I had a TSH level of 22 and therefore an underactive thyroid. The result I was put on thyroxine.
Ten days after finishing the steroids I had the rash back on my legs as well as my arms, and swollen feet and ankles. An out of hours GP referred me to our Minor Injury unit where there was concern over my kdneys so a further referral onto the general hospital. High blood pressure and blood in the water sample and was told the vasculitis was 'attacking' my kidneys. Back on high dose steroids, and told I'd be sent an appt to see a renal chap. I'd also need to take calcium tablets and would need a bone density scan
Have had scan on kidneys and all apears to be fine. By this time my mobility was horrendous. It was taking ibruprofen and paracetamol just to be able to walk my son to school and then I knew I was useless for the rest of the day. The fatigue is something else that I don't think I can even begin to describe even today. How can you fall asleep mid morning, again mid afternoon, immediately after tea and then sleep all night?!
In all this my GP was great. She decided to refer me to a Rheumtologist. The Nuffield Orthopaedic in Oxford wasn't interested - apparently my blood results was normal for them?
Now time to use my private health insurance through my employer. I had now been off work for 3 and a half months. A nice chap in Warwickshire checked out my oedema, my rashes and came up with mild lupus and rheumatoid arthritis for which I now take hydroxychlorquine.
So I now have an underactive thyroid, mild lupus, rheumatoid arthritis but does all this still come under the heading of vasculitis? I currently take calcium tablets, thyroxine, 10mg steroids a day as well as the hydroxychlorquine.as well as drugs for depression which I many years ago. I know from looking at the vasculitis-uk web site that I am lucky in my rashes aren't as prominent as others. The worse is always a 'butterfly' style rash over my cheeks and the bridge of my nose and the heat which comes off of them I am sure youcould fry an egg on. Would be interested in your thoughts.
Written by
Dawnanna
To view profiles and participate in discussions please or .
Hi Dawn I could say from some of your sypmtoms that you have a vasculitis of some sort but that really doesn't help. Susan and John Mills play a bigh role in helping people with problems like yours. They can give you tips on the questions to ask and who to ask them of. I'm sure they will respond to your question soon. Just remember you are not alone with these symptoms - although it may seem that way at times.
Hi Dawn, what a journey you've been on. You mention the butterfly rash, is that the one associated with lupus? I agree with Aud above, Vasculitis can have so many symptoms, I was told I didn't have it, to be diagnosed 4 months later. Susan and John are great and their support and knowledge has really helped me.
Sarahjh2004 I have just been told that Lupus has not shown up in blood test but would not be surprised if I am diagnosed later. Did they do a different test second time?
The butterfly rash you describe is a symptom of lupus and often indicates the start of a lupus flare. Lupus and rheumatoid arthritis often go hand in hand and vasculitis is also often associated with lupus, all of them are auto immune diseases and its often the case that one leads on to another. Lupus is a systemic disease and the list of complications can be long and it seems it rarely follows the same path and varies so much from person to person. There are so many forms of vasculitis as I'm sure you have discovered and what I find so hard to know with my own symptoms is what is caused by the vasculitis itself or my other auto immune conditions or sometimes i wonder if some of my symptoms are side effects of the medication. I hope that helps a little.
Thank you all for your comments which are helpful. I've been trying to go back slightly further in my health history to see what the trigger may have been. The only thing which stands out is several episodes of 'flu like systems' of aches, sore throat, headaches and general lethargy only months apart in Aug '10, Sept '10 and April '11 which the GP queried glandular fever because my glands were up. Would this ring a bell with anyone.
Sorry for all these questions. Still getting use to the condition xx
YES!! I Believe that is when my problems began!! - I had a very bad dose of Glandular Fever followed by non viral Hepatitis!! (I was told the Hepatitis was a secondary from the Glandular Fever Episode being so severe!!
Now - looking back I am absolutely positive that this was the trigger!!
I have never been well since!!
I also now have the butterfly rash on my face and get so extremely exhausted that I have even slept right through a whole day and night!! (quite scary!!)
Hi , In the three year run up to finding I had Microscopic polyangiitis, Up to 2 or 3 time a yearI had the flue like symptoms as you describe plus a very bad cough, ,
Talking to others,,these seem to be a not unusual symptoms in the run up to vasculitis.
Hi Dawn, All the symptoms you describe are consistent with vasculitis but the buttefly rash on your face is highly characteristic of lupus. Some people have a cross-over and as Jenny has said, you can get vasculitis as part of lupus. The thyroid deficiency and RA are both auto-immune diseases, like vasculitis and lupus. David Jayne at Cambridge runs a combined lupus & vasculitis clinic. He is probably one of the top experts on these two very similar diseases. A referral there might make it clearer what disease you have and get a more directed treatment regime in place. Your GP could arrange a referral. It doesn't mean you have to keep going there, you can continue your treatment at Royal Gloucester with guidance from Cambridge. The team there are always happy to support other doctors in diagnosis and treatment - provided that the doctors at Gloucester are prepared to take advice! Both vasculitis and lupus are very complicated to diagnose and treat and there is no shame in taking advice from experts who see dozens of cases every week. I should also check out the Lupus UK website and Lupus HealthUnlocked sites.
Thanks John and Susan. Will mention this to my GP when I see her next. I must admit it is nice to 'meet' fellow sufferers through this forum and discuss issues. Dawn
Hi Dawnana. I found this site (and John via the helpline) one of the most helpful I've come across a while ago and have now come back to try and work out skin issues.
I have a diagnosis of RA and of autoimmune hypothyroidism. My blood markers are not indicating Lupus although many of my symptoms are apparently and my ESR (inflammation marker) is usually high. I currently take Hydroxichloraquine (400mg) and Levothyroxine (100 mg) and antihistamine plus Ranitidine and Amitriptyline (20mg) and AdCal D - and eye drops for dry eyes too. I feel like autoimmune central without a proper home to go to just now!
My rheumatologist saw me last week and I gave him a symptom sheet, a Prednisolone journal (I was recently on it for five weeks for RA flare in feet) and photos of various visible goings on about my person. He seemed to find this useful as he asked if he could keep it. I recommend this approach of recording your symptoms if you do decide to follow John's advice.
I wish I could see experts who know more about Vasculitis and mixed connective tissue/ neuro/ dermo problems but I live on a Scottish island so have to trust that my rheumy knows
what he is doing. It is so hard when you appear to have bits of everything but nothing really clearcut or obvious I know. You have my sympathy. RArebird
hi ive been suffering with vasculitis and got diagnosed with it august 2014 when i had this rash starting to appear on my lower leg and i didnt think much of it as thought could be a heat rash but then the next day it spread and got more pinker so i decided to go to the doctors and she had no clue what it was. to be honest she was useless and told me to put e45 cream on it so i did and the next day it spread really bad to both legs, both arms, pubis, and stomach and they were covered in huge rashes and u couldnt see my skin so saw a different doctor and he was good. he prescribed me prednisone 50mg which brought the rash down but i ended up getting multiple leg ulcers on both legs and ankles so i was put on oramorph 4 times a day and 400mg of tramadol and 3600mg of gabapentin and it helped the pain.i was also taking multiple antibiotics because of the ulcers getting so infected. it took 6months to clear up and heal properly. it was agonising. my feet and legs were so swollen i couldnt hardly walk. i was also keep getting severe adominal pain with it and that wa so painfull. i had so many blood tests all my full blood count was always inflammed they did so many test by bloods. now this year about 2 weeks ago it came back but not as aggressive but thats because i was put on prednisone straight away and a steroid cream.touch wood its cleared nearly but my gp is sending me of to have a CT scan and an ultrasound for my kidneys, pancreas and liver as im getting adominal pain again. im now currently on 80mg zo-morph which is a slow release morphine, naproxen 1000mg a day. 240mg of slow release dihydrocodeine a day and still on 3600mg gabapentin. it depresses me having this illness as u feel really run down and the burning pain is hell and it feels like u have been dragged through a thorn bush its an awful disease. hope things r going good for u.
This is me sorry for your suffering but so glad you posted this. It has taken me 18 months of constant problems to the docs and AE. Last night conclusion is on horizon.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Recently diagnosed with ANCA Vasculitis.
Is there always a rash with vasculitis? 
HSP / Vasculitis skin rash
Just Diagnosed with Systemic Vasculitis
Leukocytoclastic vasculitis - is that a full diagnosis?
