Vasculitis UK
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Going in to full remission after Two years,

Took my last steroids tablet this morning been on over 2years

I have Anca Vasculitis which hit my kidneys which was at 6% two years ago which I had only days to live.

In total I nearly died twice.

I was on dialysis and plasma at the beginning and chemo tablets which I was very sick with I was only on chemo for three months was suppose to be on six months but it effected my bone marrow and liver in a big way was then put on imuine not sure on spelling Excuse me please put it made me very sick was taken off them after a few weeks I was to see my consultant again was put back on it again which I didn’t understand or heard right I was great that day I took the tablet that night at 8 at 11 that night was very sick next morning I ended up in coronary care which I nearly died my our constant the main one held my hand she promised that it would never happen again they contacted a specialist consultant who Specialised in my illness give me tablet organ rejection medication it worked but the main side effects was skin cancer which I had pre- cancerous on my cheek.

During my illness while on chemo I lost power in my legs I use a sick very bad unsteady on my feet but I never once let my illness get to me never just aways remember forget about it don’t let ur illness get to you find something to keep u going.

The only two things that really bothered me was the you urin bag I didn’t like it I always hid it called it men’s handbag u need a laugh and my memory I have trouble with my memory would aways forget what I was going to do or what someone would tell me something I’d forget after awhile and forgetting people’s names specially people Neighbours I have known all my life.

I would get very upset at times but I have a great doctor,

So when I told my consultant about my memory he told me my illness would of went to my blood vessel in my brain which he told me I have short term memory loss he said the same happens to people who suffer mini strokes.

So now in 16th of March this year my consultant is taking me off all medication for my illness full remission and if illness and in a year time next year no sign off my illness anymore as they said it burns out I’ll get the all clear.

So if u ar as sick I as I was and I was very sick my immune system is very low so I take care I don’t go near sick people don’t go into places where there’s a lot of people and only go to mass when weather is good as that’s the place you will catch something cus people go to mass them coughing sick sneeze’in that is way u if ur immune system is low stay away,

People used to visit first when came back from Hospital she would always get to the door first and if they had a dose or was sick she wouldn’t let them in she told them that my consultants said no visitors in the house if they had a illness.

She aways maked my own dinner first I was on a lot of foods I wasn’t allowed in the beginning I was well looked after at home with Mom my sister and my doctor.

So never give up if I can get better u can too my mobility or great but I never cared not much of a price to pay when I nearly died twice. I wish everyone here peaceful and healthy new year,

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Thank you for sharing your story and I hope you get off all meds as planned this year x

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You have coped really well with this horrible disease.It was good to hear you have found ways to cope. I agree being positive really helps and finding something to focus on that interests and not let the illness take you over completely. It is a daily battle.

I wish you a better 2018 and success coming off the meds. (getting rid of all those side effects will be wonderful)

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Great to read and hope all goes well when coming off medication.I have ANCa Vasculitis with CKD Stage 3 but on Rituximab and steroids and blood pressure tablets but touch wood not doing bad.All the best to you.

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that's Quite a roller-coaster ride you've been on & scary too! So much depends on having a consultant you have trust in & believing too, that your body can heal, given the right meds. Clearly, your Mum was a 'tiger Mom', keeping sick people away so you didn't pick up more germs! Congrats on being 2 years in remission & let's hope it stays that way! Happy new year to you.

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I have had the last rites as my lungs were filling but the Meds they would normally use were not any use as my legs were throwing clots plus I had a v/bad sepsis. It was a case of being placed in an induced coma and being observed. At day 4 they started to lessen the Meds keeping me in drug induced coma and that’s when I had the last rites. I don’t really have much memory of what happened in that first week to be honest but I was told it was very touch and go & that they had seen people with lesser infection just pass and so I guess I’m a fighter even when unconscious. I certainly have some stories to tell but, like you, I stay away from crowds, I have my priest visit me once a fortnight now, to take communion & discuss all things spiritual. The biggest thing I miss now is going to watch the rugby. I’m very much a house man now but with no company as my now ex couldn’t cope with being a care giver and I actually understand it. Of course it upset me as life on your own can be truly evil.

I’ve had my first normal CRP in 11 years & i’m awaiting the anca blood tests. If they show clear then I too will be in an official remission.

Wishing you all the very best. It sounds like you have awesome support.

I’m now suffering from a very dark depression but have the community psychiatric team on the case but the earliest the can see me is 3rd October so I battle on. Prior to getting sick I was a solid 90kg of muscle & blood but steroids had me bloat to 106kg of fat and retentive water. I’ve now lost way too much and too quickly & my clothes are hanging off of me. That is being looked into. I have a low red blood count and much smaller than normal blood cell size. I have purposely not been web searching as i know it can be another hellish experience and worry me. I’m lettibg the doctors have the responsibility and I know it’s cliche but I really do take it one day at a time

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