Not Arthritis after all!

Hi everyone. I have been looking at this site for the last couple of years now reading about the issue's you all deal with on a daily basis and my admiration and respect for what you go through is immense.

Two and a half years ago I started having pain firstly in my back and then later elsewhere. I was sent for chest xrays where they discovered I had lung nodules, well, further along I had a biopsy which to my delight proved that they were not any type of cancer but could be linked to a type of arthritis, connective tissue disease!

In the meantime back and forth my to see my GP he had me on Ibuprofen 600mg 3 x day plus tramadol and butran patches to keep me comfortable.

When I used to visit my Rheumatologist for various check ups I would always come from there without a diagnosis as to what was causing the severe pain I was in daily.

Cutting a long story short, I visited the GP about three months back now and he decided to do a blood test on me at the surgery, (Blood tests were being done at the hospital on all visits over the two years)

Anyway, the same day I have a phone call from the Doc. who states that I need another blood test and I was to have this done the following morning first thing! Worrying moments. Goes to the surgery where the Doc has the nurse meet me and hands me a letter to go straight to the hospital for the blood test and wait there for the result to be sent to the Doc. surgery, he will then ring me and if there the test was the same I was going to be admitted.

Apparently my kidneys were failing rapidly which showed that the creatinine levels were increasing to dangerous levels. My GP immediately stopped the ibuprofen as he now suspected that these may be the cause, I had been on these for two years through his prescriptions and no one had pointed out that these creatinine levels had been increasing month on month over the previous 5 months and the hospital had not investigated at all.

I decided to pay for a private kidney specialist as I didn't want to wait for the NHS and am I glad I did.

Since then I have had a biopsy on the kidneys and then got my diagnosis which is Vasculitis.

Not a nice thing to have but at least now they know what their dealing with, a rare disease i'm told.

I am now taking high dose of amlodipine while they decide what to treat me with to prevent further damage to my kidneys which are now just 37% of what they should be.

Hopefully now I will see results.

Why I have decided to put my story up is I have read all your posts over the last couple of years and can honestly say that they helped me along the way knowing that I wasn't alone.

How you all deal with this a horrible disease amazes me, and I just have to say how much I feel for you and genuinely hope that one day some one in a lab will soon discover a treatment that will beat arthritis.

I move on now to try and find out more about Vasculitis!!

Bye Bye all best wishes to you all.

Bri.

9 Replies

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  • There is a fantastic community on here for vasculitis tisme. I belong to it.

    healthunlocked.com/vasculit...

    and they have an equally fantastic website, vasculitis.org.uk

    Wishing you all the best with your new diagnosis and whatever treatment they offer you.

  • Thank you poemsgalore1 that's very helpful of you. As a result I have just registered to attend the Cardiff Bay talk on rare disease. Knowing more about what the implications are of what I have surely will help.

  • Absolutely, the website has information about all types of Vasculitis and about what treatment you may have. X

  • Wow. Amazing and scary story. Sorry you have been so close. A very close family friend was misdx as RA but actually had vasculitus. Take good care of yourself. Thanks for sharing.

  • I have RA and vasculitis Stephpz. Vasculitis is not only a rare disease, it's also very difficult to diagnose. x

  • Nothing so valuable as good health is there. How long you been diagnosed?

  • RA diagnosis in 1987, Sjogren's 1988, Bronchiectasis can't remember date. high blood pressure 2012, breast cancer 2012, osteopenia 2013, nodular prurigo 2014, vasculitis 2014. Anything I've forgotten? Hmm, I'll think of something. ;-)

  • My god you have had an outing!! I promise not to moan anymore. My thoughts and best wishes go to you.

  • Must have been having a senior moment when I put my post up!! The medication prescribed is amlodipine but they are to get the blood pressure under control which has also increased as the vasculitis got worse, my main treatment is Prednisolone steroids and when I next visit the Rhumy I will be put on an addition medication to maintain the remittance I am now enjoying.

    Sorry to confuse!

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