Wednesday, 28 April 2010

Course of treatment?

Two posts in a week is unheard of from me lol!

Just wanted to share what direction my treatment is going.
I went to see my neurologist on Friday and he agreed with me that my daily injections of capoxone (stopped now) were the cause of my breathing problems and site reactions. Seems I have most probably become hyper-sensitive to the drug.
So we discussed what direction and course of treament we should be looking into.

We are looking into a drug called

Tysabri (natalizumab)

Tysabri (also known as natalizumab) is a drug used to treat highly active forms of relapsing-remitting MS. It is proven to be effective at reducing relapses by approximately 65 per cent in people with the condition .

I will have a MRI scan in the next few weeks to see if I need it.

Here is a little bit of imformation about it.

Who is it for?
People with relapsing remitting MS. It is available on the NHS for people who have had two
or more disabling relapses in a year and have signs of new MS inflammation on a recent MRI
How is it administered?
Intravenously by infusion into the vein once a month
How does it work?
Natalizumab is an antibody that works by attaching itself to cells of the immune system and
preventing them from getting into the brain and spinal cord, where they normally cause
damage in MS.

The most common side-effects experienced after taking natalizumab are, joint pain, fever,
tiredness, a runny or blocked nose, sore throat, feeling nauseous, headache and dizziness.
In addition, skin reactions to the infusion are experienced.
One serious and often fatal side effect is a condition called progressive multifocal
leukoencephalopathy (PML). This is caused by a viral infection in the brain. The risk of
developing this is about one in 1000 for people who have received natalizumab for more than
12 months. The risk of PML with natalizumab use increases after 2 years of therapy. Patients
with MS should be informed about the risks of natalizumab, including PML, both before
treatment and again after 2 years. People taking natalizumab are monitored regularly to
identify PML and other potentially serious side effects as early as possible.

As of 10th March 2010 there have been 41 reported cases of PML of which 9 resulted in
death. However, the risks of developing PML remain at 1 in 1000.

I would value prayers at this time . As it would be a huge decision.

Friday, 23 April 2010

The sun is shining.

Just wanted to share how blessed I feel.

We at home are having a roller coaster ride of health issues but I am so at peace about it all. It is impossible to put into words how I feel. I have no worries or stress about any of it.
God has been so good to me and Us as a family.
We all at times can be so unthankful for Gods mercies towards us. We too quickly forget God is in control of all things. .
I am sitting here this morning reflecting on the past week and it has been so blessed and Gods love is so evident throughout.
I thankyou for the prayers and most importantly I thank God for loving a sinner such as I.