Symptoms of peripheral vasculitis

I have pins and needles in my lower legs and feet, and the skin looks very blue. I also get what seems like electric shock feelings in my legs and feet, and they sometimes feel numb.

I also have GCA which was diagnosed 15 years ago at the age of 54 and been on Pred. ever since, with frequent flares of GCA. I assumed it was the long term use of steroids that has caused my leg/feet symptoms, or could it be peripheral vasculitis ?

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  • Good morning, from the symptoms that you are describing this is very similar to what my partner suffers from. He was diagnosed with CSS 2 years ago and his consultant described this as peripheral neuropathy. He was prescribed lyrica for the nerve pain he experiences.

  • Hello eognij

    thank you for your reply, as I am new to this site { I have giant cell arteritis } my usual site is the pmr/gca site, I am also trying to get use to all the abreviations.

    I will look up CSS and lyrica

    bowler

  • Apologies for using abbreviations, it is difficult understanding the condition and treatments available as there are lots of forms of vasculitis and different treatment options depending on type and severity of condition. CSS is churg strauss syndrome, or also more recently known as EGPA or eosinophilic granulomatosis with polyangiitis. This is imflammation of small and medium sized blood vessels. Lyrica is an anticonvulsant drug used for neuropathic pain. My partners treatment plan consists of steroids as you have mentioned, IV treatment of cyclophosamide and IV treatment of rituximab but everyone is different. Not sure if you know but there is a facebook site - vasculitis uk which I have found very useful since my partner was diagnosed.

  • I have quite severe peripheral neuropathy with very similar symptoms to you, particularly in my feet, which started with a flare in my GWP/WG (although I'm C-ANCA negative and al other bloods are fine). I also have severe, persistent headache which is also a result of nerve damage caused by the low-level active disease. Prior to that I'd been steroid free for three years and whilst they did damage to my joints and eyesight back then, I have no reason to suspect they have played a part after all this time.

    My peripheries are extremely cold for most of the time but my heart, blood flow and capillary reaction are all fine so it would seem it's nerve damage causing the 'wrong' signals to be sent. It is possible it's CNS/PNS vasculitis but suspect the symptoms are simply related to my GWP.

    The two articles below may be of interest.

    Healthy wishes.

    Martin

    hopkinsmedicine.org/neurolo...

    ninds.nih.gov/disorders/vas...

  • Thank you for your reply and the 2 articles.

    I have just started to look into vasculitis, and by the sounds of it, and regarding my symptoms it doe's seem as though I have periheral vasculitis ? I didn't realise there were so many forms of it, [ vasculitis ] It seems that steroids are the treatment for most of them which I am already taking for my GCA. [ Prednisolone ] I am seeing my Rheumatologist in Sept., so will tell him about these new symptoms I am having, I assume that that IF I do have vasculitis, I would have to be refered to the vasculitis clinic at Addenbrooks. I often have wondered, if GCA is a form of vasculitis why is it treated in the Rheumatology clinic,? all very confusing.

    best wishes

    bowler

  • GCA is mostly seen by rheumys in the UK - but in other countries it can be eye specialists or neurologists. It's a historical thing, probably because the PMR part of the symptoms have always been thought to be a rheumatism. Good centres have close links with other departments within the hospital who are brought in to consider other options without the patient being sent away and having to start the referral all over again - one of the less helpful reforms several years ago that doesn't take the reality of illness into consideration. Patients rarely only suffer from one problem!

    It is only in the last few years that the majority opinion has become that GCA is due to a vasculitis of some sort in the arteries - mainly because the imaging techniques (PET/CT and ultrasound in particular) are now available to show the inflammation. They would be the ideal way of diagnosing them really but they are very expensive and only available in a relatively few big centres - so the waiting lists are long. There is hope of a more targetted blood test though after some of the most recent research was published a few months ago.

  • Hi Bowler

    Historically vasculitis was generally treated by rheumatologists but as specialist knowledge has advanced there has been a move towards a more multi-disciplinary approach. e.g. At the specialist vasculitis clinic at Addenbrookes there are 14 or more consultants who work together in various numbers according to the type of vasculitis and what regions of the patient are affected so you could well be seen by three or four consultants. Where ever you're treated, the main consideration has to be whether your consultant has the knowledge and experience to diagnose and treat your condition. Without doubt, that expertise exists at Addenbrookes and at other similar centres around the country.

    The V-UK website has a great section on the different classifications of vasculitis (http://www.vasculitis.org.uk/about-vasculitis/types-of-vasculitis) and the routemap (http://www.vasculitis.org.uk/content/downloads/r-m-july-2014.pdf) is a fabulous document to help you understand more.

    'Welcome' to the enigmatic world of ANCA Associated Vasculitis ;-)

    All the best.

    Martin

  • Hello Martn and PMRpro Thank you for your reply's and info,

    I'm so thankful that I attend Addenbrooks they are so good , the only problem is I have a 40 mile round trip for my appointments, but well worth it.

    I live near Cambridge and there was something on our local TV news [ I didn't see it ] regarding some experiments on a new drug [ they were testing on mice] for the treatment of vasculitis instead of steroids ?

    Like you say PMRpro.... patients rarely suffer only one problem, like me I also get PMR which comes under rheumatology.

    regards

    bowler

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