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

Long flights, great support & doing something stupid…

Wow! Was it really August when I last wrote anything… That time sure has flown by, so here is my next instalment of my AS journey.

I previously mentioned that I was going to start trying a few anti-inflammatory ingredients to see how it goes. Well I can definitely say I’ve changed a lot of my eating habits from it. My red meat intake has reduced a lot and I tend to find myself eating more vegetarian, salad and fish meals which previously were a rare occurrence.

I’ve found some good recipes which I’ve tweaked slightly and have listed a few below

· Vegetarian chilli

· Turkey burgers wrapped in lettuce leaves with roasted vegetables

· Lentil pie (following the same recipe as a Shepherd's Pie, without the lamb)

· Ricotta, spinach and mushroom gnocchi

· Vegetarian paella

· Spicy Squash & Sweet potato soup

Should anyone be interested in any of these recipes let me know as I’ll happily share how they are done

A few of these recipes do include a few ingredients from the nightshade family which usually do not work well with people with inflammatory diseases, however I’ve found if they are cooked well the potential pain they can sometimes cause reduces if not noticed at all (however this may not be the case for everyone).

Towards the end of last year I attempted my first long flight since being diagnosed with AS and yes I ached once the flight had finished however I was in no more discomfort than from standing up for a long time. Equally making myself stand, stretch and doing the flight DVT exercises whilst sitting down did help.

I did however need to have long hot shower(s) to ease the ache across my shoulders more than usual. It was good to have a break out in Dubai at the end of November especially as the UK weather was cooling and heading to a warmer place was definitely a good plan (even if it seemed I took the torrential rain out with me…)

I had a fun time out in Dubai especially as I also managed to see an old friend for a few days who very kindly offered me my accommodation whilst out there, I will return in the winter months and hopefully next time it won’t rain…

Something really great happened back in August where I started seeing someone who is very supportive towards my condition and has been a great compliment to my life; she definitely has helped me more than she knows. We definitely work well together I find myself smiling again because of time spent together with her.

My challenges have gone on the back burner at present however they will be resuming very soon. The hill walking in the Peak District was great and definitely worth doing again, a fantastic mixture of great walks and the views were breath taking.

Recently I thought I was doing OK with my condition and decided to reduce the Anti-inflammatory medication I was taking (even down to a few weeks without any!) and started to notice a slight deterioration in my health where I saw myself starting to get back into old habits with bad posture and fatigue.

I’ve gone back on my medication and I’m stretching on a daily basis again, also ensuring I’m going along to the gym and hydro session run by my local National Ankylosing Spondylitis Society (NASS) branch as with other commitments I missed 6 week's worth of sessions. I’m already noticing an improvement myself which is great. However I’ve realised that was such a silly thing to do in the first place.

It takes time to train the body and not much time to let it deteriorate. I found this out randomly when I went to the dentist and could not rest my head back on the seat. Like most people it looks like I need to see something before trying to correct it.

2013 has started well and I feel confident I’m back on track again. However I’m fully aware the smallest of things can de-rail this and will look to try and ensure whatever happens I deal with and I’m sure various people including my special someone will help me.

There are days when I don’t want to stretch due to some pain discomfort however I still try, I know some of you really do struggle to be able to do this however even the smallest stretch does help. I find myself stretching in some strange places, usual whilst queuing for something (being the UK there are plenty of opportunities to do this…)

In April I have my next appointment with my Rheumatologist and I’ve decided to take a more hands on approach with him and make my appointment feel worthwhile, wish me luck…

I know this is not a huge instalment this time however sometimes loads of words are not needed.

Speak soon everyone

Matt