First time here - GP thinks I have Vasculitis

[ShonaGreen]

Hi, I'd appreciate your help, I'm a member of the Thyroid, Raynauds and Migraine forums on HealthUnlocked so I was pleased to see there was a forum for Vasculitis too.

I'll try to keep it brief, my right hand has been swollen on & off since Christmas, with my thumb, index finger and little finger most affected. I have small red/purple marks on the tops of some fingers and knuckles, and my index finger is swelling from the knuckle, is sore to bend as the skin is sore and hardened. My fingertips are bluish most of the time and sometimes my fingertips are so sensitive that even the slightest touch is very painful. In the morning my whole hand is red and puffy. I've been finding it difficult to pick up the kettle, to write and to generally grip things.

I've had Raynauds for a while and usually have the same problem with both of my feet, and my big toes are now usually bluish and swollen. I'm used to losing the feeling in my feet when it's very cold. I've been taking 10mg Nifedipine which has helped somewhat but hasn't helped with my hands.

I also take 100mg Amitriptyline & 50mg Topiramate for chronic migraines, and 100mg Levothyroxine for hypothyroidism (possibly central as pitutiary problem). I'm also being investigated for POTS, have had a positive tilt table test and awaiting other tests to rule out heart problems.

So yesterday my GP thought the marks on my fingers were from Vasculitis and then when he saw my notes mention POTS he was even more convinced. He asked whether I ever had investigations for Raynauds, which I haven't, or just given medication based on symptoms.

I'm not familiar with Vasculitis but from what I've seen it seems to be pretty rare so wondering if it could be something else? I've now been referred to a local specialist but I think it will probably take about 6 months to be seen. The GP said there's nothing I can in the meantime as no treatment for Vasculitis. I've attached a photo of my hand but it doesn't really show the marks properly.

I'd really appreciate your help, thank you.

[Mooka]

Hi ShonaGreen. There are about 18 different types of vasculitis and even within them the symptoms vary so I think you will be lucky to find someone here say they have the same symptoms as you especially when you have so much else going on. I suggest you visit the vasculitis U.K. website and look at the types on there. To reassure you the symptoms of vasculitis can be treated. Most GPs don’t understand vasculitis so you would need to see a specialist and your GP should be asking for a priority appointment. Good luck. Do let us know how you get on.

[ShonaGreen in reply to Mooka]

Thanks for your message Mooka , I've taken a look at the website, like you said there's so many different types so lots of information to take in. I'm being referred to a POTS specialist and there's a long waiting list but I've got lots to read in the meantime!

[NacMacFeegle]

Hi ShonaGreen, it is hard to tell by the photo but those look like chilblains. I agree with Mooka, the most important thing is to get accurately diagnosed. Good luck.

[ShonaGreen in reply to NacMacFeegle]

Hi NacMacFeegle , I think they're probably chilblains too and the specialist will not be too happy when he sees me after the GP saying it was vasculitis! I've seen so many specialists for different things, all I really want is to feel normal again, but at least with the better weather my hands should clear up soon hopefully!

[gooseflight]

Hi Shona, there are a range of treatment options for vasculitis, if that is what you have. Accurate diagnosis is vital, as others have mentioned. Getting some bloods done would be a good start.

[SCMW]

Hi, I’ve got a photo of a siblings hand that looks just like that - all of the females def have blood vessels burst in their fingers. It causes that bluey colour or purple, it does hurt at the time and then heals up. There absolutely are treatments for vasculitis, both myself and I mother have now been diagnosed so do check vasculitis U.K. or specific names conditions if you get that far. For example o have Behcets. Good luck.

[ShonaGreen in reply to SCMW]

Thank you for your reply @SCMW, that’s interesting that your siblings hands look similar to mine. In the last few days I’m getting more of a rash across my fingers and it can be quite painful, but using chilblains cream and taking painkillers when need to.

My GP wants to refer me to a POTS specialist as thinks it’s linked to that, but just found out that this specialist only sees local persons in Plymouth and semi-retired so I won’t be able to see him now. I live in Devon and nearest POTS specialist in London, I’ve had an initial private appointment with him a year ago but he wants further tests done to rule out heart problems and I can’t get them done on NHS so am going around in circles again.

I don’t think my GP will be in contact with me again about this now, and I was hoping it would just clear up, we’ll see what happens next week.

[SCMW]

Hi, sure - that line grand mother had raynauds, it’s interesting that the rheumatological conditions and vasculitis can also affect the heart. I have a very high rate and have had arrhythmia, most patients tend to say they get checked and no major issues but I am on a beta blocker. I’ve had similar issues with getting my mothers heart checked as recommended by rheumatology and we just had to keep chipping away. I hope you get somewhere with it. Best wishes.

[ShonaGreen in reply to SCMW]

Hopefully things will start to return to normal soon, take care SCMW !

[ShonaGreen in reply to SCMW]

Hi SCMW I had a follow-up appointment with the POTS specialist today. I contacted him to ask about the possible vasculitis queried by my GP and sent him some photos of my hand, as still having the same problems. We had a video consultation so he could see my hand, he agrees that it looks like vasculitis and that it has nothing to do with POTS (which I now have under control). He advised seeing a Rheumatologist and there’s around a year’s waiting list for this. I’m not sure if they will have even see me as I was discharged after first appointment with Rheumatologist a few years ago when I was negative for all the antibodies tests apart from ANA and Thyroglobulin.

But I guess I’m wondering that once my hand gets better is it likely that I won’t have anymore problems, or is this possibly the start of it all? I understand there’s lots of different types of vasculitis, I looked at the Vasculitis UK website for more info, so it’s hard to tell what’s going on. My GP didn’t seem too concerned anyway so probably best just to wait and see what happens.

[SCMW]

Hi, ok well that’s sounds positive. It might be worth ringing rheumatology & saying you’ve been discharged but you have new symptoms and it’s been suggested it’s vasculitis as they might get you back in more quickly. I’m not a medical bod but just by our own experience, I would say keep at least a photo diary. Just pay a bit more attention that usual - any skin bumps, redness, patches, as it was actually suggested to me to do this and when I did get checked by a specialist centre, the photos clinched the diagnosis. Re the anti bodies, I haven’t had any show, Behcets doesn’t typically show this way. My mother had high IGG and as described by haematology a cocktail of them, but none in the pattern for say something like lupus. It could be a small vessel vasculitis if you’re fingers are affected. I found this diagram on research on the web which might be of interest. Take care of yourself and best wishes.

Vasculitis family / hierarchy / relationships

[ShonaGreen in reply to SCMW]

Thank you SCMW that’s really helpful, I’ll keep on with the photos and hopefully will get to see someone soon 😀