Thursday 16 May 2013

To humira or not to humira....

So here is my next installment about my journey with AS... Please feel free to read it...

So after feeling like my appointments with my consultant were not being that productive I decided to list everything I wanted to know and had 11 subjects I wanted to cover.  Did think this may be difficult to achieve in the 15 minute appointment window I had.

That day previous appointments were running late and when I got in there it is was busy room with a couple of trainee doctors in there as well.  In fact I was happy to see them as I knew my consultant would have to answer all the questions I had with text book answers.

I had been on Ibuprofen based medication for my condition which did not seem to help me so before the appointment I was starting to research the pros and cons of Humira injections and yes like most medications there are possible side effects however I decided it was time to take a new approach with my treatment.

We discussed this and decided this would be the next approach for my treatment.  I was given a pile of blood and nuclear forms for various blood samples that were needed and a chest x-ray as well.

A few weeks before my appointment I met up with a friend with a medical background who I’d not seen due to them being overseas.  He asked what the MRI scan showed and it got me thinking that I could not remember having one done... So this was my next question and was told as the initial x-ray and positive HLA-B27 test was sufficient for the diagnosis.  I may re-visit this...

I found myself getting into a vicious circle of needing to exercise however found myself being to tired to do this and needed to kick myself out of this cycle so also started to research alternative therapy exercises and was careful not to just ask the question of 'shall I try alternative therapies?' as the response would have just been 'Yes'

So my approach was a little different and asked 'what alternative therapies should I not try?' (Even the trainee doctors smiled with that question...) 

The answer was pretty much what I expected which was ‘some things work for some people and try something and see how it goes...’  Better answer than just hearing 'Yes' I suppose…

I had other subjects that we talked about which are trivial and are not needed to be written here...  My appointment stretched out to 35 minutes and I left with a great feeling of achievement and definitely will take this same approach on my next appointment.

I would definitely recommend thinking about how to phrase questions beforehand to ensure that you do not just receive a Yes or No answer from your consultant and take in that bit of paper you wrote them on...

The following day I had the blood samples taken and the chest x-ray done.  The guy doing the x-ray asked me to stand straight to the machine and asked 'is my spine usually that wonky...' I did chuckle and said 'Yes'.

Last week I received the literature about the Humira medication and was called by the nurse to arrange my delivery of Humira pens and was glad when they told me it would be the pens and not the syringes.  These are arriving this Friday...

Next step will be having a nurse visit me at home to show me how to use these pens which need to go straight into the thigh or stomach.  This is due to them being a protein and the contents cannot be taken orally as my digestive system will neutralise it apparently.

So very soon I will begin my fortnightly injections which I'm slightly apprehensive about however feel this is a positive decision in which hopefully I will see an improvement after the subsequent weeks of having these.

I'm aware there is a risk that my immune system may not be as strong as it was however that is out of my control so I won't allow myself to get stressed about it...

For the past few weeks I've been trying a beginners Qi-gong class which concentrates on energies around the body and movement.  Already I am starting to feel good from going to these sessions and even better the movements shown are something I can easily replicate at home or work. 

I do however seem to have rubbish co-ordination so I've not got the exact hang of the movements yet, and have a certain degree on tension in my shoulders which hopefully will reduce the more I attempt these exercises.

With the brief warm weather we had recently I've even got out on my bicycle again and really enjoyed the time riding around.  More of this is planned in the next few weeks. Equally I will start to resurrect personal challenges with hopefully going to Snowdonia and climb Snowdon in July (walking not catching the train by the way)

After a bit of a blip earlier this year I'm starting to feel I'm managing this condition again however there is still lots more to do with it, one great factor is my other half. She provides me with such fantastic support which helps greatly in managing this condition. 

So here I am at the stage where I am about to begin the pen injections and my next update will mention how it goes.  Wish me luck…

Thank you for reading.

Matt