My story so far....

[Ccwalker]

I was diagnosed with Normocomplementaric Urticarial Vasculitis in November '17 after 6 months of going backwards and forwards to my GP who didn't really have a clue what to do with me! In April '17 I had suddenly developed a horrid burning itchy 'rash' all over my body, including my face, which all seemed to clump together! It was driving me mad as the meds I was given (very mild antihistamine, prednisolone and various creams) seemed to have no effect at all. I also found exposure to sun dramatically increased the lesions and the discomfort . I was eventually referred to a dermatologist who, after taking a biopsy and doing a batch of blood tests, diagnosed my condition. I was prescribed Fexofenadine 180mg, taking 360mg twice a day and Hydroxyzine Hydrochloride 50mg at night. After a month or so the urticaria disappeared and I was advised to start reducing the meds (which I did). I had a few minor recurrences when I had a cold but nothing severe. However all that has changed since early January when I got this awful flu which I am still suffering with. Unfortunately, it has caused a major reoccurrence of the urticaria and I'd say that it is the worst it's been! I'm back on the large doses of both drugs together with an additional Levocertrizine but they're not really making any noticeable difference! I'll obviously continue to take them and hope that once my body has dealt with the flu the urticaria will also subside and go! I have read a good deal about the condition and it seems the prognosis is such that these flare ups will continue to happen if I have an infection of some sort. I'm feeling very low ( and tired) with it all at the moment which is out of character for me. I've never suffered with depression. I'm trying to carry on my normal life but it's taking a huge effort to do so. I'd really like to hear from anyone with similar symptoms and whether you have any good tips for managing them

[jgold]

It look as if the dermatologist who has diagnosed vasculitis may not have prescribed the most appropriate treatment.

I suggest you discuss this with the Helpline associated with this website. They may be able to point you in the direction of a specialist in your area who is experienced in vasculitis. vasculitis.org.uk/helpline

I would treat this as urgent, because untreated vasculitis can escalate at any time to cause major organ damage.

[Ccwalker in reply to jgold]

Thank you for your reply. I saw my GP yesterday who phoned the On call dermatologist at the hospital. He has put me on Ranitidine and Montelukast in addition to the other meds and also have been given an appointment this Tuesday to see another Dermatologist. Hopefully they'll sort it but I will seek advice from Vasculitis UK before I go. Many thanks again,

Celia

[jgold in reply to Ccwalker]

Definitely, please, speak to the Helpline.

I've read many entries on this website, and much else about vasculitis, and don't recall any reference to Ranitidine and Montelukast. They may be relevant to your condition, but I doubt that they will help with the vasculitis - if that is a correct diagnosis.

If there is even just a suspicion that you have vasculitis - and there is because one of your doctors has mentioned it - then you need to see an experienced specialist in the subject and see them quickly. Identifying such a specialist is what the Helpline can do - and very likely they can provide you with much other help.

[arcr]

Hugs to you !!!