After Three years I am been taken off my me... - Vasculitis UK

Vasculitis UK

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After Three years I am been taken off my medication for my illness Anca vasculitis.

Fred27 profile image
8 Replies

On June 2015 I only had days to live my kidneys where at 6%

I was send to hospital in Letterkenny Donegal IRELAND,

After blood tests in A&E I was rushed into tensive care

I was rushed by ambulance to beaumont hospital Dublin

Where the consultant and team was waiting for me coming in the hospital was taken into a room laying on my stomach he done test on my kidneys where he told me I was a very lucky man my kidneys where big if they were small I would of been in trouble .

I was diagnosed with Anca vasculitis I was on plasma and dialysis and put on three chemo tablets and steroids .

The steroids blew me up and one thing I never liked was the Catheter bag For my kidneys nothing else bothered me.

Had Constant pain in my head Side-effect Of pink stuff the renal nurses cleaned my Catheter in my chest when I coped on about it they started using Brown stuff after a while my head wasn’t as sore.

and Constant pain and pressure in my eyes it was side-effect of steroids a hole two years.

I was then taken back to Letterkenny hospital a week a few days,

After a week or two they had to take me off chemo tablets as it affected my bone marrow and liver big time I was lucky it came back to normal.

I was put on a tablet called Immune I wasn’t on it very long as I took a side-effect to it my skin came out on a rash I was very sick in hospital over two weeks.

I was only on dialysis for only 6 months I was very lucky.

A few weeks later I got a phone call from hospital to come out

I was in great form I was told I had to go back on tablets which I did not hear right so I was told to start the tablets that night at 8pm.

When I left the hospital I went with my sister to shops and had my dinner came home and took the tablets at 8pm by 11 that night I was very sick i ended back in hospital in coronary care with an regular heartbeat and was on dialysis for a few days,

My consultant came and held my hand and promised me that they would never do that again to me and that she was in contact with a specialist consultant in Dublin and he give me a tablet called myfenax a organ rejection medication ,

The side-effect is skin cancer I had pre- cancers on my cheek twice last year and this year.

Talking about side-effects my legs where damaged by chemo tablets a few days after I came back from Dublin I couldn’t Walk Right only steps was told it might come back but it now won’t but I don’t let it bother me never did or my illness as well u can’t be childish u have to fight always think positive .

Since the first of January this year I was taken of steroids it Affected My hip and back.

I had my hospital appointment with my Consultant And was told I lost three stone since Christmas and I was also told that there is no sign of Anca vasculitis my kidneys are at 27 normal person is 100 and she said I am taking u off myfenx tablets for Anca vascultis and when I come back in three months in October off all together,

I think myself if it doesn’t come back in a year I’ll get the all clear

My own doctor said to me not necessary A year to wait all clear so I am just waiting for the two Magic works “All Clear”

My consultant told me now go out the door smile positive your getting better.

I am so lucky to have great doctors & nurses,

I will inform u all when I get them two words all clear !!

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Fred27 profile image
Fred27
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8 Replies

So glad your getting on really well. It's a rough disease and nice to hear when people are doing well.

Dbis22 profile image
Dbis22

Brilliant news. I went through a similar kind of hell 28 years ago. I have been largely medication free (in respect of my Wegeners) for 10 years and my kidneys have returned to normal. I see my rheumatologist every six months. He’s telling me he thinks the disease has ‘burnt itself out’.

Coming off medication can be terrifying but you’ll get there.

I wish you all the very best for the future.

Enjoy life, it’s precious.

Christophene47 profile image
Christophene47 in reply toDbis22

Congratulations from the United States! You must have a strong will to overcome what you have been through Best wishes to All Clear!...

AndrewT profile image
AndrewT

Dear Fred27,

I have 'Taken' this Assessment, as best I can, however I DO live in Fully Supported Accommodation and have the fullest Support, from my Mother. I these respects I feel 'Lucky'.

I DO appreciate, the fact that, not everyone has the Support that I do. If I have a problem, even to the level of not being able to connect my Printer, then Someone will help me.

So, you see, I'm not really in a 'Normal' situation.

AndrewT

Balderick profile image
Balderick in reply toAndrewT

You ARE very lucky. I don’t even have a next of kin and hospitals ALWAYS say you must have someone but I just don’t

Balderick profile image
Balderick

Good luck though it seems strange to take you off straight away and not a cutting down structure. Sounds like you’ve had an awful time of it

Glenville profile image
Glenville

great pal hope you continue on the mend best wishes Glen

Dramaticharlie profile image
Dramaticharlie

So positive 🤗

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