Hello....

[Pennycat18]

Recently diagnosed after a rapid decline in kidney function ...keen to learn more as my treatment continues....it's difficult, as so rare a condition people around me assume treatment will fix me completely and I find hard not to portray an upbeat persona even when I get freaked out......looking forward to some like minded banter, advice and mutual support

[ZiggyDiego]

Sorry to hear this: which sort of vasculitis have you been diagnosed with? I have GPA/ANCA associated vasculitis. I was diagnosed in January 2017 and since then I've had to explain what it is at least once a week. When I was having cyclophosphamide last year, most friends/family got the chemo thing but when I wasn't cured it got more difficult for some. The ones who have stuck with me have been incredible. I tell people it's affected me from my head (eyes, temporal artery) to my toes (peripheral neuropathy) and most things inbetween. I show them my phone with 11 alerts for my medication and offer them shot glasses of peptac (generic gaviscon, for reflux/heartburn) to join me in toasting my good health. One friend told me it's ok to leave my illness at the door and pretend not to be ill for a while to get a break: it took a while to get my head round this but I find it useful sometimes as so many people just do not know what to say and it's easier to talk about other things. All the best to you and hope you get treated well and get remission soon.

[Pennycat18 in reply to ZiggyDiego]

Thank you - sounds like you've worked hard getting some focus....I think biggest thing for me is this condition I hadn't even heard off before so its been so much to take in in a short period.....trying to remain brave and positive difficult with elderly parents and your own kids you want to protect from any worry....but I'm trying to be much more upbeat....I don't know yet how to cope with the "oh well at least its not cancer" comment I've had a few times...but again this is such an unknown disease that I'm constantly learning too....thanks for support

[Keithtim10]

Hi pennycat i was diagnosed with ANCA Vasculitis in 2015 and it left me with damaged kidneys where my gfr never gets above 40 which at the time freaked me out completely.Now after loads of medication including Cyclophos. Steroids,Azothioprine,Rituximab a Plasma Exchange.Although it sounds a lot i can understand how you must feel but i now do feel pretty good.I have learnt so much about my condition and changed my diet to look after my kidneys i do feel very positive.This last 6 months i had a setback not so much with the Vasculitis or Kidney issue but a tumor was found in my bladder which was cancer but i have had it removed and had Chemotherapy to help prevent it coming back.Point i want to make is yeh you will have bad days but they are few and far between and i great considering.I have support from my wife and friends and loads of support on this site so overall life is good.I have brilliant consultants who check me on a regular basis which is great.Hope this will give you some positivity and good luck and keep talking.

[xz3sgn in reply to Keithtim10]

Hi Keithem10,

I'm also affected by AAV with impaired kidneys. Can you please advise about ur diet which is focussed towards kidney safety.All the best with ur health

[Pennycat18 in reply to xz3sgn]

I had a dietary consultation and avoidance of excessive salt seems to be the main driver.....along with every healthy eating plan - fresh home cooking the order of the day and side-lining any ready meal / processed foods......thanks for well wishes...

[xz3sgn in reply to Pennycat18]

Many thnx Pennycat18

[Keithtim10 in reply to xz3sgn]

Hi i now for example dont take salt at all and in terms of food i dont eat Bacon, red meat ,processed foods only small amounts of cheese.I do eat a lot of fresh veg and chicken and fish.The unusual thing is when i spoketo dietician she said i could eat all sorts of spicy foods which i enjoyed previous so thats good.In many ways its just being snsible but it is worthwhile speaking to a dietician.Hope this helps good luck.

[xz3sgn in reply to Keithtim10]

Many thnx Keithtim10

[Pennycat18 in reply to Keithtim10]

My GFR at last consultation was 42 ...would you say this puts us in a safe range ?

[stuc]

Hi Pennycat18

You don't say what your diagnoses is. I was diagnosed with GPA ANCA vasculitus April 2017. This primarily affected my lungs and I ended up in intensive care for several weeks while on holiday in France. I had a number of cyclophosphamide infusions before moving onto azathyoprine and stereods when I returned home. My family and friends have been an incredible support, both in the initial diagnoses stage when I was in a coma and particularly recently when I have relapsed. I am generally a positive person anyway but have had a couple of bouts of being unwell over this year which have tested my resolve, this has affected my lungs again but also has had an impact on my eyes, ears and nose. I got the news in July this year that I had relapsed and needed rutiximab infusions to bring the condition back under control, this was a blow however I have 3 excellent consultants who look after my respiratory, kidney and rhuematology functions and they listen to me and take me seriously when I talk about how I am feeling. I am on the up at the moment and remain positive. Keep your chin up and if you can, try to say to yourself as I do. THiS WILL NOT GET ME DOWN AND WILL NOT CONTROL MY LIFE.

[Pennycat18]

Hiya ….yes me too ANCA positive GPA - I had treatment very quickly as decline was rapid which included 7 plasma exchanges and no I am having cyclophosphamide infusions along with the steroid treatment. I have had great support to be fair but as outwardly you look ok....apart from the emoji moon face and hair going fuzzy - the low energy levels I don't think people realise....but you are right we can kick its ass....

[Katiz]

Hi pennycat. Diagnosed with MPO ANCA +VE Vasculitis in May, with reduced kidney function now stabilised. Finished 6th cycle of chemo 4 weeks ago and now on 30mg predisilone daily, reduced by half since I left hospital. Doctors tell me everything is going in the right direction, but in my experience it doesn’t always feel it. Waiting for aziothropine to start now. I am working, though not terribly effectively in my view, but have had great support. I think everyone thinks that treatment = positive upward trajectory but it is much more up and down and therefore difficult to explain. If anyone asks how I am, I still burst into tears, not very professional but I always blame the steroids. Such a rare condition I had to explain it to occupational health. I still can’t cope with the physical changes, moon face, buffalo hump etc. But the positive side is I’m still here and still fighting, even if the treatment makes me feel worse than the original condition. Everyone says be brave, but really there is no other choice. I’m staying on the journey on the basis it and life will improve.

[Pennycat18 in reply to Katiz]

Day by day....making most of the well days