Thursday, 11 June 2009

A little more about me

Born with ceoliac disease (gluten intolerance) I was diagnosed with psoriatic arthritis after the birth of my second child, although it actually kicked off after the birth of my first.

It began in my foot, then one day my index finger ballooned like a sausage. I was pushed around a few doctors before I actually did some research, and put the psoriasis (which I hardly have actually) and the arthritis together, told the rheumatologist my thoughts, and bingo.

I was devasted, I remember walking home thinking, I'll be in a wheelchair, I won't be able to care for my children, my husband will have a different wife to the woman he married. Looking back now, I can see how ill I was, tired from having two young children, breastfeeding, living abroad (Montreal, Canada), missing my mum, and dealing with the extreme weather conditions.

Thing progressed quite slowly and I managed. I went on to have a third child and after that (now back in the UK) my doctor really wanted to put me on immune-suppressants. I was very, very, reluctant. I already had coeliac disease (gluten-introlerance) and had a gut feeling this sledge hammer approach might upset my body even more.

Eventually I had to give in, I saw x-rays of my hands, which are the main areas affected, and I knew the damage was already quite extensive. I had to start doing as I was told. I was put on Etanercept and anti-TNF drug administered by self-injection. For a year I felt great, really great. Then one day my arm started to look a bit red and I felt as if I had the flu. I went to bed and woke up a few hours later with a very red arm. My husband took me to the hospital and I was told I had cellulitits. I was kept in hospital and given intravenous antibiotics. This happened three times before I was taken off the Etanercept and then I was left to self diagnose myself with Lymphoedema as my arm didn't return to the same size that it was before.

The only treatment for Lymphoedema is Manual Lymphatic Drainage (MLD) and compression garments. It makes the arthritis worse because my fingers swell, that makes it harder to move the joints, which makes it harder for the lymph fluid to flow...and so it goes on in a vicious circle.

So for now the doctors have given up on treating me with these immune-suppressant drugs and in some ways it's a relief as I was always suspicious that I would just end up destroying another system in my body.

Now there has to be another way. Actually after 15 years I am now convinced there is. So I'd better get on with it.


  1. Thanks for sharing Joanne. I am convinced there is another way too. Destroying organs and the balance of my body is what I was afraid of too. I feel like I am soooo close to doing this successfully without the drugs. :)

  2. Joanne, I came in from your other blog, actually. What a brave young woman you are. My eldest son has spondylitis, a form of athritis that affects his spine. It is painful and debilitating. He is now on Embrell, given by injenction, and is feeling so much better. I do hope you succeed in fighting this disease without too many complications.