IM NEW TO THE SIGHT and need to know,how is the type diagnosed? what treatment is best ?

Hi Debbie, it might be worth you sending a private/secure message to John and Susan to let them know the medical region/hospital you are treated in and they can give you an address of a vasculitis aware centre in your or near your region.... What you are experiencing is something many of us have been through before we could get the specialist help our particular type of vasculitis needs. I am sure John and Susan will not mind me advising you to do this.

Hope this helps ... keep strong

Jo

Hi Debbie, There is no such disease as Leukocytoclastic vasculitis. It is just a name used to describe what is seen when the biopsy is studied under the microscope. It is a symptom of several types of vasculitis. You won't find it as a disease in any vasculitis textbook. Almost certainly all your symptoms are due to the one cause and you need to know what sort in order for it tro be treated properly. It is essential that you see someone who will look at the whole picture and not just your skin!!! As Jo said above, please contact us asap by private message.

John & Susan

Good luck Debbie, with the right consultants you should make progress. We were suffering at the hands of an incompetant doctor but have just changed to a more open minded one. Now we wait for an appointment at Addenbrookes. Best wishes to you

Hi Debbie, I do hope John and Susan can help you. Without an aware and understanding rheumatologist you will struggle to find a definitive diagnosis, in fact even with one its difficult. Being no expert of course, I would say what you have sounds like HUV (you can easily look it up-my symptoms sound the same as yours) but there are many forms of vasculitis and the more I investigate the more of my symptoms I can relate to it. Keep finding out all you can and you will have to do a lot of the work yourself as the NHS isnt always as good at diagnosis as we would like to think. Find yourself a good consultant though and you will progress much quicker. Maybe Azathioprine is worth discussing with your doctor, it helped me get down almost off the Prednisolone. All the best

Sorry - Hypocomplementemic Urticarial Vasculitis -

Thank you all for your replies. I suddenly feel less alone ! I will message John and Susan as suggested but it is great to have someone try to answer questions iv been asking myself for so long with no answers.

thanks Deb

It is most imperative that as a patient of a rare disease you are persistent in the collaboration of your medical information to be shared by all doctors either via phone, email, fax, whatever venue you can insist on. It is the right of the patient to insist on conclusive date be shared. It is also your right to insist on further testing immediately rather than when the medical profession deems it necessary. Your voice, your health, your needs first.

I wish you luck Debbie. Blessings on this journey.

Dear Debbie,

To me it sounds like you might have an 'uncatogorised' vasculitis; this is one, or more, 'strains' overlapping.....Don't panic! So have I!! I have had for fifteen years now, ok I'm now on dialysis, and have heart failure (not that badfly) but I'm alive and so are you! Regarding you worries, re your condition, there is vasculitis specialist at Addenbrooke's Hospital, name of Dr Paul (I believe); worth 'checking' your medications with him. It will men going to Cambridge, mind you; don't know how far from where you live it is but DIFINITELY worth it!

Let me (us) know, will you, good luck anyway.

Kind regards

AndrewT

Hi Deb, just so you know I am watching from a far If you need practical help for any trips away, (Cambridge for instance) dog/child sitters then you just let me know.

Everyone needs a friend!