Vasculitis Anca

[Isabellemt]

My father has been diagnosed with vasculitis anca in the liver. Has anyone received such a diagnosis? If yes please get in touch with me.

[patsy]

Hi I have anca vasculitis which caused renal failure, this vasculitis attacks the vital organs and is the rare form of vasculitis. I would be interested to hear what your fathers treatment is. Mine is high dosage of Prednisalone and Cyclofhosphomide Drip. I know the drip is Chemo but it at least Harnessed my Kidney Failure.

Pat

[Jann]

Hi,

Mine is the same story as Patsy. Anca positive vasculitis which was said to be WG. This has damaged my kidneys. My treatment echoed the one above.

[patsy in reply to Jann]

Hi Jan, how long have you had Anca for please keep in touch it is difficult finding people who have this.

Mt Gp is frightened to death of it I think because little is known about it unless you are dealing with it on a regular basis. My consultant is amazing and saved my life 2/3 times.

I was misdiagnosed at first by my gp so by the time I was admitted to hospital Blue Lights were flashing everywhere. I was stunned and dont remember that much.

My Gp Has never forgiven herself but its difficult to diagnose. As I say keep in touch.

Patsy

[Isabellemt]

Hello, my father is on ranitidine, deltacotril and cyclophosphamide. However he had to stop cyclophosphamide because he contracted an infection and had to take antibiotics. The deltacotril has caused him muscle wastage and has left him feeling very weak. He is responding gradually to treatment though.

[JacquiM Volunteer]

Hi, Isabellemt,

I am exactly the same as Patsy and Jann except that I had cyclophosphamide in tablet form, that now has been replaced by 50mg of Azathioprine and am still taking Prednisolone. The illness makes me feel constantly fatigued, as I believe does everyone else with similar diagnosis. My kidney function is slowly improving, it was 5% when I was admitted to hospital but is still leaking protein.

[Isabellemt in reply to JacquiM]

Hello JacquiM, My father too takes them in tablet form. Overall, his condition has improved but he feels there is no strength in his muscles.

[patsy in reply to JacquiM]

Hi please keep in touch as I have asked Jann too as well.

Patsy

[JacquiM Volunteer]

Hi Isabellemt,

Pleased you father has improved, from what I have read about this desease muscle weakness can be part it. I had real problems walking etc when I came home from hospital as my leg muscles didn't seem to work well at all but it did improve fairly quickly. I do tire easily still though but am building up my walking distances nicely now.

I'm hope your father will continue to improve.

Jacqui

[Isabellemt in reply to JacquiM]

Hello JacquiM

The improvement is only slight but better than nothing. He is managing to walk an hour a day, but if he accidentally trips he is not able to get up because he has no strength in his muscles. Have you experienced this.

Isabelle

[JacquiM Volunteer]

Hi Isabelle,

As you have said, a slight improvement is better than nothing. How long has your father been diagnosed? I'm sure his strength will return in time but it will take time.

Yes, I tripped and fell over in the street a couple of months ago and thankfully a couple of people were behind me to help me get up. I do still have problems getting up when I crouch down though and my thigh muscles felt like they had locked up completely when I crouched down to put some things in my hospital locker. Had to call nurses to help get me up again - felt so embarrased - but I couldn't move and it frightened me to be honest as I wasn't prepared for anything like that.

So now I make sure I am near something to hold on to if I have to crouch so it will help me up again. But my muscles are getting stronger but I do understand that it is going to take some time so I just walk everywhere slowly just in case.

Hope that helps

Regards

Jacqui

[Isabellemt in reply to JacquiM]

Hi Jacqui

Thanks so much for your words. My father was diagnosed in August and since then it has been a sort of wild goose chase because in Malta there is not much awareness of this illness. To make matters worse vasculitis has affected his liver and I have not heard of anyone as yet who has been affected in this way.

The same thing which happened to you happened to my father when he tripped. Luckily there was our neighbour who helped him get up. I will surely tell him that his strength will return and it will certainly give him hope.

Thanks

Isabelle