Tuesday, 30 November 2010

Helly vs Arthur Part 2

Hellooooo!! *waves*

September 2009 was probably the month from hell for me.. I was climbing the walls with pain and had the most intense itching...

Discovering that my JIA (juvenile idiopathic arthritis) had come out of remission was a pretty big shock!

You may also remember my post in July this year - Helly vs Arthur where my JIA seemed to be getting under control and the next step was to start reducing the medication.

I was completely chuffed with this, not only because it meant we were heading in the right direction but also one of the side effects with hydroxychloroquine is an itchy rash.  There were days when I would want to take a cheese grater to my skin because the itching would be so intense!

Funnily enough, when I started reducing the hydroxychloroquine, the itching got worse so 4 weeks ago I took the decision to stop it altogether.

Seems to have been the right decision and yesterday I went off to see my rheumatologist for my 3 monthly check up...

The news was good... markers are still pretty positive and the proof will be when the hydroxychloroquine is completely out of my system.

It now means I get a whole 6 months until my next check up, although the door is always open to the team should I have any worries...

My rheumatologist is also going to support the group I am helping to set up in Leicester with the National Rheumatoid Arthritis Society.  The group will offer support, guidance and empowerment to people in the surrounding areas of Leicestershire and Warwickshire who live with rheumatoid arthritis. 

The group will launch in April 2011 so I'll give you more details later on :)

In not so positive news, I am going for a bone density scan (DXA).  Going on my long term use of steroids and proton pump inhibitors (PPI) the risk of osteoporosis is pretty high...

Now for those who may have not heard of osteoporosis, it means a gradual loss of calcium, as well as structural changes, causing the bones to become thinner, more fragile and more likely to break.

I've already had it confirmed in a couple of places.... firstly in my femur where part of the bone collapsed during my hip revision... I believe my surgeon described it as cottage cheese and therefore I needed to have the hip replacement secured with "scaffolding"

The other confirmed place is in my left foot.. Having spoken to the surgeons about my upcoming surgery, it is pretty clear that I do have osteoporosis, particularly in metatarsal bones.

Having a bone density scan will show at what level the osteoporosis is and how much of my body is affected... 

The test results will be in the form of two scores:

T score — This number shows the amount of bone you have compared with a young adult of the same gender with peak bone mass. A score above -1 is considered normal. A score between -1 and -2.5 is classified as osteopenia (low bone mass). A score below -2.5 is defined as osteoporosis. The T score is used to estimate your risk of developing a fracture.

Z score — This number reflects the amount of bone you have compared with other people in your age group and of the same size and gender. If this score is unusually high or low, it may indicate a need for further medical tests.

Now I'm not sure how the scores will be taken into consideration given that I've had both hips and knees replaced...

Either way, I'll keep you posted on the results.  If osteoporosis is serious, then there is medication I can take although given my age it can limit what I take.  I would also need to consider whether I still want to go down the route of having children... 

So for now... it seems Helly - 2 Arthur - 0 (it ain't over till the fat lady sings :p)

Oooh and in other news... Sunday was my birthday and I was suitably spoilt!

Bye for now!!

1 comment:

  1. Great news on the Artur! Less good on the osteo...I've got osteopenia/osteoporosis too but can't tolerate the Calcium/vit D supplements which is a bit of a pain...
    So chuffed for you though BG Xx