Just Diagnosed with Systemic Vasculitis

I was Diagnosed earlier this month with Systemic Vasculitis, ive been having problems since sept 2012, I suddenly got severe Raynauds, with 4 finger ulcers, freezing hands etc

Eventually i got to see a Rheumatologist in Dec who admitted me straight away, for 6 hours a day for 5 days an iloprost infusion, which opens up my veins arteries etc worked very well, my ulcers are nearly gone now.

Went to out patients, Dr told me id got systemic Vasculitis, and id need treatment straight away as an out patient, im on Cyclophosphamide IV every 2 weeks and steroids IV. ive

had one treatment so far

Ive had weak legs and my feet have a really funny sensation, i really cant explain

Dont know if its side effects or is it Vasculitis, I dont know which Systemic Vasulitis ive got

either,

16 Replies

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  • So sorry to hear this Kate... you really need to know which type of Systemic Vasculitis you have ... where do you go for your treatment? It sounds as if the doctor is starting you off with the correct Initial treatment but it would be helpful to know a little more... have you had regular blood tests? if so what are these blood tests for? Are your kidneys beeing monitored? Has anyone mentioned an ANCA blood test at all?

  • I go to Sheffield Royal Hallamshire Hospital, ive had all sorts of tests, blood and urine, ECG, MRI, Pet, ultrasound, angiogram Xrays etc

    i have had loads of blood test, nobody has mentioned ANCA,

    ive had 2 urine tests, apparently i had an infection while i was in hospital, nobody said anything to me, what are the symptoms of kidney problems

    When he asked if ive any questions i did say no,

    its only now 3 weeks later and ive loads of questions now

  • Hi,

    Sorry to hear this. I am a recent diagnosis and started on the steroids just before Christmas. It is all very scary and new when you start out so do use us for support. I have early TA,

  • Hi i have a systemic Vasculitis, i don't know which one yet, im going to hospital Monday for treatment IV which im dreading cause i will be ill for a few days,

    I agree its very scary, i have fantastic support from family, friends and work,

    How are you coping with it a

  • I was diagnosed with Systemic Vasculitus 3 years ago, I had hives all over my leg, my legs and hands and fingers doubled in size, I was in agony, my legs went blotchy brusing like and I had no energy at all and became breathless on walking, all my joints were painful, I had steroid injections for a year and a half, put on 4 stones, everything has settled down now but one thing that has never gone, was my sheer lack of energy, they did discover sleep apnea so now I am under papworth hospital, but my lack of energy is bad, some days I get a flushed face across my cheeks, yet the doctors now say my Vasculitus has gone, they ran blood tests, each blood test different GPs ran said the test before wasnt the correct one, they all contradict themselves, but no one wants to listen to me, I still believe I have this condition and I believe it manifests itself in a small way, I wish I could get an ANCA test done but the doctors wont let me, they keep telling me I am ok, they wont let me visit a Rhumatologist because they believe I am 'Cured from Vasculitus' I find it hard to believe because I know full well when you get over a flare you can be in remission for a long while, if then the doctors think its gone, then why do I still suffer constantly and have done for the last 3 years from lack of energy, its been crippling my life now with joint pains for the last 3 years, well they blame my weight now, but I put 4 stones on with steroids, I was like it before that but they wont listen. Make sure you are persistant with your doctor and dont end up like me still getting nowhere, you have a right to get yourself well, these GPs get paid for their living and all want to comply with NHS cutbacks, and in the long term it is people like us who suffer so badly.

  • sorry to hear about your problems, im finding it hard to accept ive got Vasculitis, maybe im in denial, its all happened so quick

    I also have tiredness, weakness specially lower legs and feet also weird sensations

    on bottom of feet

    Ive done the opposite ive lost 2 stone and a bit over last 3 months ive no appetite

    I had the ANCA test no one told me the results yet.

    I do hope you get the treatment you need

  • Kate, I really hope these doctors give you some treatment soon dear, keep pressing them and dont give up, I keep complaining Im so drained and exhausted, now they are saying its weight, and not Vasculitus anymore because they say 'its gone', from what I have heard from others I am probably in remission, you will get yourself right, you just need the right treatment, John and Susan are great people and will give you all the support and help you need, good luck dear and I hope its not too long before you get the help you need

  • Sorry i started treatment 7th Jan im on cyclo,,,,,,,and steroids IV have my next treatment is Monday, I only know ive got a systemic Vasculitis Thanks Kate

  • If you would like to talk to John about all of the above please send him an email he maybe able to help john.mills@vasculitis.org.uk

    take care

    Susan

  • Thanks i will do

  • Hello Kate,

    I have MPA, and started with symptoms very similar to yours. I lost a lot of weight quickly and had no appetite. My legs were very weak, as all of my weight loss was from my muscles, and I had pins & needles and a creepy crawly-type sensation in my feet, which my renal consultant says is nerve damage from the MPA. It's lessened over the past year, but flares up every so often.

    The signs of renal involvement for me were frothy urine and a strong smell. The doctors will look for protein and blood in a urine sample, and then may do a biopsy to confirm what type of vasculitis it is.

    Hope your treatment goes well today.

    SusannC

  • Hi Susan, Been for treatment, i feel ok for now

    I had a word with Dr about my feet and legs, she didnt seem too worried, i couldn't describe how it felt

    had urine test and it showed there was white cells, Protein, blood, they didnt seem worried,

    If no one is worried, why am i? and why am i on cyclop and steroid IV

    i asked which vasculitis, they said its like a finger vasculits nothing to worry about, if there isnt anything to worry about, why am i on a drug that the side effects is cancer etc............sorry im just very confused.....Kate

  • Hi Susan My Dr thinks it MPA, my feet and legs still feel weird

    My urine infections gone now, and cyclops etc is once a month now

    Hope you are well Kate

  • Hi Kate. Have you had the results from your ANCA test yet? This will at least tell you whether you have any inflammation going on. It's good to hear that your urine infections have gone - one thing less to cope with! The weirdness in your legs is probably due to the weight loss being muscle, rather than fat. It takes a while to get your strength back in them, but you need to keep doing gentle exercise like walking to stop them getting worse. Hope you're feeling better today. Susan

  • Hi Susan, they didn't mention ANCA, just that they have improved, I know I should ask, but I forgot, I'm going on Thursday for Cyclops and steroid, I will ask them about it then,

    I need to strengthen them as I'm going back to work on 31st but only as very part time, Kate

  • I would suggest you make a list of questions related to your worries and ask yor Consultant to answer them. It's your body, you have aright to know! ATB.