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

I was diagnosed with Vasculitis 2 years ago after lots of tests and eventually a biopsy, I had never heard of it before so after being prescribed Prednisolone for the condition started looking into it a bit and found there are lots of different types! When I next seen my consultant (a dermatologist) I asked which type I had. After a debate (as he didnt want to tell me?) he said I had Leukocytoclastic Vasculitis and we have worked on it being that ever since, however, after 2 long years of Pred, Aza, Dap and lastly Colchicine I am in the same, if not worse condition than I was at the start and im starting to wonder why none of my other symtoms are being taken into account. It seems to me that whatever my complaint is at the time, neither my doctor or my consultant want to piece it together as being part of the same thing and im not sure either but would very much welcome any opinions out there about my condition. I have trouble and pain in some of my lower body joints (never before vas) I have developed high blood pressure (never before vas) My iron levels are very low (never before vas) Iv had Liver and Kidney test come back wrong (never before vas) I am constantly tired and by tired I mean VERY VERY tired (never before vas) and iv had leasions EVERYWHERE except my face. A week ago I had another biopsy taken as my consultant wants to see "whats going on" and will have those results when I see him next in another 2 weeks. Does anyone out there think (like me) that I have a different type to the type I was told and also are there any other drugs that may help calm this thing down, The ONLY thing that has worked so far is HIGH levels of Pred and as soon as I start dropping the dose gradually, it flares straight back up. Any help would be wonderful, Im desperate now! Thanks Deb

10 Replies

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  • 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

  • Hi John and Susan,

    As Im not sure if this is the right way to send a private message as Im new and i dont want to put any Hospital/consultant details in untill I hear from you so i know im going about this the right way. Please let me know and also any information I can give you that might help you to hopefully help me.

    Thanks Deb

  • 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!

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