Vasculitis UK

Anybody here with Pan

I went to the hospital yesterday to see the Vasculitis specialist who feels I could have pan

I have had a skin biopsy which showed Vasculitis but they said it wasn’t enough to diagnose from and they need at least two firm markers

They mentioned an angiogram and need to see my nerve biopsy that had taken months to process

So my question is I suppose how was you finally diagnosed with pan

8 Replies
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Hi,

I think they are referring to the ACR diagnostic criteria for PAN

rheumatology.org/Portals/0/...

I would bear in mind that they aren't 100% sensitive or specific and patients can present without typical symptoms.

PAN is one of the rarer Vasculitis variants and can be systemic or cutaneous ( confined to the skin ).

I hoe you manage to get some answers soon.

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A good overview of PAN

hopkinsvasculitis.org/types...

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Hi yes - I have "suspected" PAN, although much like yourself they haven't been (as of yet) able to fully diagnose. I also had a skin biopsy and I am currently on Prednisolone and Dapsone at the moment - the symptoms, which manifested only in 1 leg have very much dampened down and they are now starting to reduce my dose of both

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It is essential you are seen by doctors who have experience and knowledge of vasculitis, as PAN is extremely rare

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Perkles is being seen at the Vasculitis clinic in Birmingham. 😀

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That’s good news to hear

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Hi Perkles, I have PAN, diagnosed in June 2007 after a skin biopsy. It was thought to be cutaneous but later developments and further EMG tests showed it to be systemic

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I had a biopsy, the pathologist results pointed directly to PAN on a skin biopsy that was in the area of my pain but no rash. I ended up going to see a university medical dr. That imaged my vascular system and then did nerve condition tests on the leg I was losing feeling in. Based on the results and blood test, they felt confident it’s PAN, and I had to do cytoxin treatment of chemo, since the methotrexate treatment did not work, also the kept me on prednisone for the treatment and started a taper at 3 months that lasted almost a year ending in going from 10 mg down 1 mg a month. I am feeling much better and almost all the feeling returned in my foot. No more painful lumps so far, but I am also on calcium channel blockers, medication to thin my blood and medication to open up my smaller artieries more and water pill, potassium and azathioprine.

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