Instant Vasculitis

I woke on Monday past and noticed these red spots on both legs and feet. Within few

hours they had multiplied and I decided to see my GP. He diagnosed a form of vasculitis and instructed me to atten A &E at our main hospital here in Belfast. I was seen by a doctor fairly quickly and she undertook to get me an urgent appointment with a dermatology consultant which I am now waiting for. The Purpura has got even more dense and angry looking and I am in a lot of pain. I never slept last night. The hospital gave me Gabapentin for the pain relief but it's not doing much good. Is there a suitable cream that would help the stinging sensation and what pain killer might help.

13 Replies

oldestnewest
  • Hi,

    There are over 18 different variants of Vasculitis, yours sounds like it could be HSP

    vasculitis.org.uk/about-vas...

    Did the A&E Dr check bloods and dipstick your urine for blood and protein as HSP can be associated with kidney involvement.

    I am not surprised Gabapentin isn't working as it's primarily to treat neuropathic pain. I would go back to your GP and ask for some strong painkillers and get them to dipstick your urine. If thats ok then Ibuprofen can help. I would also ask for an urgent referral to a Consultant with experience in managing Vasculitis, not a Dermatologist!

  • This is the link to the local groups, I would contact the Northern Ireland representative to get the names of appropriately experienced Dr's.

    vasculitis.org.uk/about/fin...

  • Yes all bloods urine samples taken yesterday. waiting for call from dermatology.

    Get your point about a Vasculitis consultant. Biggest problem is the stinging,do you know of any creams that might relieve that.

  • It might be worthwhile trying a mild steroid cream and moisturising with an unperfumed cream. You need to be careful that the skin doesn't break down and form ulcers. Rest as much as possible with your legs elevated.

    Was your urine dipstick and bloods ok? HSP can be very tricky to treat in adults.

  • the only thing said was the platelet count was slightly low. That was on the first blood test. Other bloods were taken yesterday for dermatology. My legs are a mess never seen anything worse and the pain is something else

  • I am trying Kapake which I happen to have. Would Ibuprofen be better. Thanks

  • Only take ibuprofen if your kidneys are ok as it can be very toxic to them. Kapake should be fine.

  • You *urgently* need to see a kidney doctor in nephrology as they are the ones in Belfast City Hospital who look after autoimmune diseases like vasculitis. I am looked after by Dr Chris Hill. In others places like the Ulster Hospital it would be a rheumatologist.

    Creams and painkillers are not doing you any good - you urgently need specialist treatment before the vasculitis does more permanent damage.

    I was hospitalised in the RVH with Wegeners Disease 2 years ago and it was Dr Hill who ended up in charge of me.

    If you want to send me a personal message to get my phone number I'm happy to share my experience.

  • hi - i had a similar case, vasculitis which has now affected my kidneys. I am started on Myfenax hoping to treat my kidneys. can you share any info that can be helpful. thank you

  • I would strongly suggest that you talk to the Vasculitis UK Helpline. There are so many types of vasculitis and I really only know a bit about GPA. If you want to have a chat about Belfast-specific things feel free to give me a ring tomorrow on 078 1587 2010. Best regards. Cecil.

  • Hello,

    The experienced Vasculitis support on here (Keyes & others) helped us a lot when my wife started with Purpura on her legs (this spread upwards to arms, buttocks & chest) and joint pains in July. In her case, the Vasculitis went on to affect Kidneys, Sinus, Oesophagus, Bowel and other areas. HSP is still the "probable diagnosis" (we avoided a Kidney biopsy as the other symptoms and test indicators pointed this way). Read the VUK website papers and they will guide you. Go with your instincts, as what you learn about Vasculitis will probably be more general knowledge than most GP's and Consultants (I ended up telling them what biopsies to take or if they had not done the right blood tests). Please follow the VUK advice until you are satisfied you have the right medical team looking at you.

    The advice on seeing experienced practitioners asap (i.e today) in Belfast or Ulster is sound. Push your GP hard (ask for a dipstick test and result there and then and give them a HSP/urine/blood tests print out from this site). We were in hospital the same day (after a "firm" GP "discussion") as blood and protein were present in the urine, after I requested a dipstick test. I also asked for Immunology Bloods (following advice from VUK) and this showed elevated IgA, amongst other things. In Hospital we got the right daily precautionary urine (blood, protein) and blood tests (CRP, IgA, ANCA etc) & immediate test results. In our case, a few weeks in a Renal ward followed. Early diagnosis is key. Dermo 500, was given to help with the rash, other creams made it worse. Paracetamol helped. Elevated feet & rest is very, very important.

    A Dermatologist in our case, was lower down the priority list - although a skin biopsy may help to diagnose HSP. Few tests are definitive.

    We ended up fighting for a referral out of Wales to find an experienced Vasculitis Doctor (Salford Royal Renal Unit have a Vasculitis Clinic), as we felt that nobody was co-ordinating the issues (we had 5 Consultants not speaking to each other). Most GP's will find it hard to cope should the illness develop, but this did not stop the need to push them (you may be lucky). Post hospital weekly blood & urine tests were decided upon in our case and monthly test continue now.

    My wife has been lucky and has so far avoided any other medication. Contact us if we can help.

  • I was admitted to The Ulster hospital in Belfast after being refused admission at the Royal Victoria Hospital who ,in spite of a doctor's referral, to A& E did not seem to recognise the seriousness of the disease and were talking about an appointment with Dermatology in 2 or 3 weeks! I would not have liked to see the condition of my legs if left ubtreated for 2 or 3 weeks,they probably would have needed amputated. I am receiving steroid treatment and having a battery of appropriate tests done. pain relieve with c-codomol. Thanks for all the advice on this forum and I feel sure I will have a good outcome.

    By the way all this appears to have been sparked off by applying De.Ceuticals Foot Rescue SOS Cream from Boots. After 3 applications this severe reaction seems to have ensued.

    Has anyone else seen anything triggered by this or similar creams or lotions.

  • I was diagnosed with Hypersensitivity Vasculitis (Leukocytoclastic) in May 16 and is my case they were not sure what caused after changing medications to see if anything changed. It did not. My legs, feet and ankles were badly affected with the rash which resulted in me developing ulcers mainly on the ankles which were badly swollen making walking and driving impossible. I tried several courses of steroids, anti histamines and painkillers, the only thing that helped my feet was betnovate and my dermatologist getting me on dapsone (to take at least for a year) and complete bed rest for 3 months. I have unfortunately been left with quite a lot of scarring. Hope you feel better soon x

You may also like...