Hi Ladies,
I was diagnosed with Chronic Idiopathic Urticaria and Angioedema 4 years ago, I have very large weals which fill with fluid, very very itchy, all over my body except the bottoms of my legs. angioedema in my face and throat, usually eyes and lips. I also suffer with nightsweats, hair loss, fatigue or exhaustion depending on whether I am having a flare, muscle and/or joint pain, gastro problems and my migraines have got worse.
- so far I have tried:
Fexofenadine 360mg
Tranexamic Acid
Citirizine
Hydroxyzine,
Montolukast
Hydroxychloroquine
Sodium Chromoglicate
As none of the medications have taken away my symptoms, I was sent for a biopsy over 2 years ago and this confirmed I actually had acute leucocytoclastic vasculitis. This seems to lead to diagnosis of hypersensitivity vasculitis, urticarial vasculitis, hypocomplementemic or normocomplementemic vasculitis. No-one has ever explained the difference and no-one agrees exactly which one it is, all will result in a trace on google and there is lots of info on all of them.
I was offered cyclosporin for this which I declined as it is a drug used in chemotherapy and can affect your kidneys, it can put the vasculitis into remission but if you get a virus back it comes, so I didnt see the point in having toxic drugs for no real cure when I get chest infections every winter whch will bring it back.
I am lucky as I live in the North of England and there is a specialist immunology unit at the Northern General Hospital in Sheffield where I live. The staff there are excellent and the nurses attached to the unit are fantastic. So if anyone lives in the UK I would recommend seeing if you can get a referral there.
So for anyone with Chronic Urticaria who isnt responding to treatment, it may be worth asking for the biopsy to see if you acutally have vasculitis.
The bad news is that unless you are prepared to go for the strong toxic medicines straight away it may be a long process for finding a treatment that works, 2 and a half years later I am still trying.
I must say that the Tranexamic Acid does help with the angioedema, it doesnt stop it altogether as I am sat here typing this with a great big fat top lip!!! - but it has reduced the severity and sort of restrains it to either eyes, lips or throat instead of all in my face, eys and lips and was so heavy it dragged all my face down. I restrict my dose of Tranexamic to 1000mg twice a day, the recommended dose is double this but I have high cholestrol, so anyone taking the full dose may find it does take it away. It is normally a drug taken for heavy periods but the leaflet says it can be taken for Heriditery Angioedema, but helps with my non hereditery sort.
So at moment I am taking the fexofenadine double dose, tranexamic acid, hydroxyzine, I can only take 10mg or I cant get in to work and it makes me really bad tempered, prednisolone if I need it when I have a flare up, and I have just been given Danazol to try, if that doesnt work, dapsone is next and then colchicine.
If you live in the US or attend the specialist immunology clinic in the UK you can also get Primatene which helps with angioedema in the throat, I dont have an epi-pen as my angioedema isnt allergy related but this does help. It is not licenced in the UK but is in the US as an asthma spray I think. I get it from the hospital pharmacy only, I cant get it on prescription from the doctor.
I hope there may be something from my experience which helps someone out there get a better and quicker diagnosis. I have never come across anyone else who has what I have so its lovely to find this site with other people who understand exactly what this is like.