Hi, my GP thinks I may have Vasculitis and referred me to local hospital, they contacted me today and have an appointment with Vascular surgery next week.
Since Christmas I’ve had a swollen hand on & off, with sore fingers and sores/bruising with small red/purple spots along fingers and fingertips which are very sensitive to the touch. GP said it’s inflamed blood vessels. Started with little finger, then index finger and after a while they improved but now it’s starting on a new finger and feels like other fingers getting sore again too.
I’ve had problems with cold and sore hands and feet for years and take Nifedipine for Raynauds, but this feels different. The sore/bruising stays the same if you push it and doesn’t feel better if I’m warm. I also have chronic migraines and take Amitriptyline, so both of these medications should help me with these symptoms I think? Attached a photo but doesn’t show up too clearly.
I posted here recently when GP first mentioned vasculitis and appreciated all the responses and info provided.
I’d like to be prepared for this appointment so thought I’d ask for your suggestions please, if there’s anything I should do beforehand or questions to ask.
Thanks for your help 😊
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ShonaGreen
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Nb a Vascular Surgeon does not specialize in vasculitis. I am writing with considerable knowledge etc. Contact Vasculitis UK telephone helpline for advice. Vasculitis consultants work at large hospitals and usually specialize in renal disease or Rheumatology.
Thanks AmyS1 would it be better to keep the appointment to get the ball rolling, hoping they could maybe refer me to someone else? Worried that if I cancel that appointment, GP might not be willing to make another referral as they think this is the best course of action ?
To be fair, when I worked in a vascular lab, our vascular surgeon worked closely with the medical rheumatology consultant and in a similar situation of ignorant GPs the referral would have been sent back with a redirection or the patient would have been sent to the vascular lab for appropriate tests so they were available in case the vasculitis was causing PVD symptoms.
But isn't it worrying when a GP doesn't know the difference between vasculitis and vascular disease.
I am amazed and pleased your GP has got you to see a consultant. My GP eventually sent me to A&E for tests for which I was initially diagnosed with Reactive Arthritis and referred to Rheumatology. After further rapid decline in my situation and another blood test, I was re-diagnosed with Vasculitis and moved to the Renal Team under a specialist in Vasculitis(important!) . Then it is a case of figuring out how much damage (scans and kidney biopsy) has been done, and stabilising the condition. Questions: Ask about damage to kidneys, lungs and heart plus other damage. What type of Vasculitis you have? The impacts of other medication? Treatment timelines? Dos and don'ts? Impacts of treatment? Diet requirements?
Hi eh66 I'm pretty amazed too! I've seen this GP a few times in the last few years with abdominal pain, bloody stools, headaches, and the same problems with my feet that I'm now having with my fingers. I've had lots of tests (found out that I'm hypothyroid too) including with Rheumatology and negative for most things apart from Thyroglobulin antibodies and ANA. I'm now on a lot of medication if feels like but still having a lot of the same symptoms so think the GP is a bit stumped and thinks maybe menopausal too (I'm age 44).
I was reluctant to go to the GP with my hands as thought it was just chilblains or Raynauds playing up, but the sores just keep coming back and getting more painful. So when I found out my appointment was with the same GP I just thought he'd change my Raynauds medication. He's actually questioning whether I've got Raynauds now as it was never officially diagnosed. He seemed pretty convinced that the sores on my hands are from vasculitis but said he didn't know much about it so he'd refer me.
Thank you for the questions, I'll be sure to ask them and I'm going to call the vasculitis helpline too. I'm thinking it's a good thing that it's just my hands that are a problem and maybe that's all that will be affected, and as vasculitis is so rare there's a chance that it's something else anyway? Thanks again for taking the time to respond, take care!
Hi Shona. I’m no expert on Vasculitis but just wanted to let you know that the sores on your fingers look very similar to what I experience on my toes. I have had issues with cold hands and feet for years but then started to experience intense foot pain, swollen and painful knees and dactylitis (known as ‘sausage toes’!) a few years ago which led to a referral to Rheumatology and a diagnosis of Inflammatory Arthritis. At the same time the sores on my toes became far worse and more frequent, but I have always associated these with Raynauds (diagnosed by Rheumy after he saw a photo I had taken of my half-white fingers during an attack), which I have since learnt can be secondary to another condition, and my Raynauds symptoms definitely seem worse when my arthritis is active.
So I’m definitely not saying that this isn’t vasculitis, but just wanted to point out that it’s possible that your Raynauds is being exacerbated by another underlying condition? For instance I believe dactylitis has a strong association with psoriatic arthritis?
In terms of your appointment with the Vascular surgeon, I think I’d be tempted to keep it also, the more views you can gather at the moment the better it seems to me, and if he/she doesn’t feel best qualified to advise, they may well recommend that you see a Rheumatologist again anyway.
Thank you Monkeysmum , I’ve had similar problems with my feet too, not helpful when you like running! My toes are bluish and swollen pretty much all the time, especially the big toes. Luckily they’ve not been too sore recently, but they can get so sensitive that even putting on shoes hurts and have to walk carefully so nothing touches them. That’s what my sore fingers are like now, can’t have anything touch them.
Thinking about it, I’ve had random problems with both of my hips and knees over the last 5 or so years, and just recently my shoulder, where I just blamed it on running.But almost overnight I’d wake up with a very sore hip, etc with no real explanation, so I’d just keep on doing everything as normal but if it got bad I’d see a physio, which I’m doing now for my shoulder.
We’ll see what they say next week and hopefully they can point me in the right direction, or send me on my way, onwards and upwards as they say!
Great that you got an appointment just a shame it’s the wrong department but then I had a tour around different departments before getting a diagnosis. If the vascular department think they can’t help you they may refuse the referral depends what your GP has put in the letter. Expect to be asked for a full history of all your ailments going back to childhood and any illnesses in your family particularly your parents. You should also have expect to give an armful of blood. Whoever you see it’s doubtful that you will get a diagnosis there and then. Good luck. I hope you get some answers.
Hi Shona I’ve been diagnosed with Behçet’s Disease which is a type of Vasculitis. Over the years I’ve had a lot of trouble with my fingers and toes and I must say your photo reminds me of my fingers. I was once told by a haematologist that it is common to have problems with the extremities in Vasculitis because the veins and arteries are getting smaller and easier to get blocked and damaged (made sense at the time). Another doctor told me to slip different diseases into the conversation such as, “could it be Behçet’s?” Hope that helps, Lesley
Hi lesleyg I got to see the Rheumatologist yesterday and she saw my hand when it’s pretty bad, index and other fingers so swollen that can’t bend them at the moment. Having a lot of blood tests so will see what comes out from that.
I have found it is best to see a Rheumatologist for Vasculitis treatment. Vascular surgeons only care about whether an artery or vessel is stable and if a stent is needed. I thought when I was told I had Vasculitis that a vascular surgeon was who I needed to see and when I couldn't get much help there I felt desperate and contacted my Rheumatologist for his advice. He told me to get to his office right away because Vasculitis falls under him for treatment. I was in such bad shape with many lesions and stenosis in my mesenteric and other arteries that my Rheumatologist told me I shouldn't be alive. He gave me his cell phone number and told me to contact him for anything and told me he wouldn't let anything happen to me. That was 2018 and he got me on a treatment plan and I am doing so much better. I wish you the best in getting treatment but highly recommend getting referred to a Rheumatologist.
Hi staylor875 thanks for taking the time to respond. The vascular surgeon was no help but I was lucky that I was able to see a Rheumatologist yesterday. She was really helpful and had lots of tests done so will see what happens next, onwards & upwards I hope, take care!
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Seeking clarity of doctors' roles since diagnosed with vasculitis.
Get a second opinion? Or not. In US. Cleveland Vascular Center or Mayo.
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