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

Increasing my education, long mirrors and broken sleep

So since my last update the good news is I’ve not shrunk any more, my pain in the neck was due to a fan I have on my desk sending cold air at my neck (proper school boy error there!).  Now the neck pain has reduced dramatically since realising my error…

The exercise challenges are going well and I completed the London to Brighton bike ride back in June with hardly any aches and pains – even managed to cycle up a 531 ft hill (which has a 12% gradient in places) without stopping which usually beats many a good man (or woman). 

I’m still cycling as much as I can and have started to plan to do other things, hill walking will be my next challenge next month up in the Peak District.  Even if I ache from doing it I’m a firm believer that it is worth it as I refuse to get back into that vicious circle of needing to exercise but not being able to do it due to pain.

In my last post I mentioned I had started to take Naproxen which did not seem to help much so I’ve now been put on Diclofenac which seems to be ok however it is still too soon to say ‘yes, this is working for me’.  I’ve got my next Rheumatologist appointment in 2 months time so I guess I’ll find out then.

Recently I attended a presentation from a Rheumatologist who has an interest in AS, to which I found very useful and informative.  He talked about a few subjects including spine trauma and Vitamin D deficiencies which I’ll go a little more into detail about below (I am aware some of you may already know this however I’m guessing like me some of you may not!)

The first thing he talked about was spine trauma and should any AS sufferer encounter any spine trauma (falling over, slipping of a step, car accident etc) to request to have a CT scan instead of an x-ray. Unfortunately the x-ray does not show enough to make a valid diagnosis of spinal issues and more often an x-ray does not show anything is wrong which could possibly cause a wrong or no diagnosis. 

It was also really refreshing to hear that my local hospital trust in Brighton (UK) has started to do CT scans instead of x-rays for spinal trauma in their A&E department.

He also talked about bone density issues. Basically people suffering from a vitamin D deficiency could be prone to fractures in their bones; this risk is higher the further you are away from the Equator (suppose it makes sense if you’re further away from the sun!)

With this in mind I’ve started to add vitamin D supplements to my diet.  Granted the supplements won’t even give you 2 sevenths of what you can get directly from sunlight however it is better than nothing I suppose.

Whilst he was talking about brittle bones issues, I started to think of a way of describing this to non-AS sufferers. I said the following to a few people I know ‘imagine dropping two items from a metre to the ground, the first being a bath sponge and the second being a piece of dry spaghetti, what happens?’ 

Most people answered the sponge will cushion the impact whereas the piece of spaghetti will fracture and/or break on impact.  Then when I said ‘imagine that piece of spaghetti is now a spinal cord’ they looked horrified.

He also said that it is very worthwhile to mention the following when attending an A&E Department after a fall.  ‘I suffer from Ankylosing Spondylitis and have a higher risk of bone fractures than other people.  Please can you do a CT scan instead of an x-ray?’   Equally it may also worthwhile getting family and friends to know this if for any reason you’re not able to say this yourself (I’ve let people know this).

I found this talk very interesting and also took a lot away from it to help my own management of this condition especially as I’m still learning about it, hopefully what I've written may be of some use to you too.  This presentation was arranged by the local NASS branch I attend.

One thing I’ve noticed is not everyone suffers the same issues and symptoms, for some people their way of life is dramatically reduced whereas other people can do triathlons, equally where you’re geographically located can help or hinder the treatment received which saddens me. 

Another big factor I seem to come across from the forums and posts I see, is a lot of the time the medical practitioners do not have the knowledge to always correctly diagnose AS or even worse do not want to diagnose AS (especially with women) which also does sadden me and hopefully this can change.

I did read one article about some UK doctor’s being educated about AS at their conferences which is can only be a good thing, hopefully this will increase awareness of the condition (my fingers are crossed that this happens).

One thing which I’ve worked out since having AS is I don’t like looking into long mirrors! Each time I look into a long mirror I see a person with a body shape that resembles a question mark looking back at me, I know that is how my spine makes me look now however it still annoys me that I see it each time. 

There is a slight positive though as it does make me check my posture frequently and I try to sit and stand better, even though I seem to subconsciously revert to slouching without even realising which I’m trying really hard to change but the phrase ‘you cannot teach an old dog new tricks’ comes to mind there. 

There is one thing which really kicks me on a daily basis and that is my broken sleep pattern, every time I roll over I wake up, if I’ve managed 3 hours of uninterrupted sleep a night I’ve done well.  When my alarm goes off in the morning I find myself hitting snooze far too many times, and feel even more tired. 

I’ve decided that my body clock is now running on Eastern Time which would be great if I was on the east coast of America however it is not so good being in the UK.  I’m now trying to get into the habit of when I first wake up (usually around 5am) to get up and do something energetic, possibly 5 miles of cycling each morning to try and reset my body clock time back to GMT.  Only time will tell if that makes any difference.

Finally I’m currently researching a few anti-inflammatory diets and have begun to try a new approach to cooking rather than my usual ‘it has to be a dead animal’ approach.  I’ve got a few ideas and I’m starting to make up my own recipes using some of the suggested ingredients however I am already missing beef.  In my next update I’ll mention how it is going and possibly some of the recipes I’m using.

Thank you for reading and for anyone who has AS I hope you have more good days than bad ones.

Matt

A pain in the neck, challenges and I'm shrinking...

I thought I would write another instalment about my AS journey.

Since I posted my previous blog I’ve not had a great time with this condition. My back is constantly stiff, my neck feels like it is beginning to fuse and the fatigue has at times been chronic.

I have found my immune system is becoming weaker and I seem to pick up more bugs and illnesses now. I find myself thinking if someone coughs near me that I may be picking something up. This has taken a lot out of me and it feels like all the good progress I made since September last year has been un-done.

My work schedule has been crazy and this has not helped my condition and/or my immune system with the additional hours I have worked. I took some annual leave as I was on the verge of exhaustion and it allowed me take a step back and look at my lifestyle and make some changes.

It also became apparent how worn out I was when I seemed to need coffee to get me through the days. In 10 days I had filled 4 loyalty cards from a certain high street coffee shop (9 stamps are on each card) and that scared me (both health wise and financially). With this in mind I’ve given up coffee and have had 1 cup of coffee in 60 days now, instead of the over 38 cups I had in 10 days.

My sleep pattern did seem to get better; equally the lifestyle changes I made also helped however this could have just been physiological brought on by stopping drinking coffee.

I did find myself getting into a very vicious cycle where I was too tired to exercise then everything started to stiffen up and that in turn made exercising difficult. I’ve taken the metaphorical ‘bull by the horns’ and have forced myself to set myself challenges with the first being this month. I’m going to cycle between London and Brighton which is a 54 mile (87 kilometres) journey.

I know I will be in a lot of discomfort after doing this however I need to keep myself moving, once that is done I am going to start planning to do something for my next challenge and believe it will be climbing 3 of the UK’s biggest peaks over 3 days. I’m scared yet excited about planning and training for this.

One thing which I do not like is I seem to have shrunk… I used be the average height for a UK male 5’10” (178 centimetres) and I am now 5’9” (175 centimetres). I am gutted about this but realistically I think I had lost an inch long before this however I had not checked.

After finally getting to see my Rheumatologist 4 months after I was supposed to, I got to see my x-rays and blood test result from last year which showed signs of fusing around my pelvis and that the HLA-B27 blood test came back as positive. I’m in a bittersweet mood as I’m glad it has been finally confirmed however also I’m slightly gutted it has been confirmed also.

The consultant also agreed with me that it was time for me to start taking medication as I’ve deteriorated in the past few months and have begun taking Naprosyn with the possibility of having to move onto either Humira or Enbrel in the future which I’m slightly worried about as they are injections and not oral tablets – however if it is something I need to do I have just got to get on with it and do it.

One thing which had been troubling me would be if I wanted children in the future and what life would they have should I pass on this condition to them. It was good to speak to the consultant about this and even though there is a 50/50 chance I will pass on the HLA-B27 gene there is a possibility they would not get it, kind of like playing Black or Red on the roulette table – I’m betting on Black hopefully Red does not come in.

My initial thoughts of accepting this condition are still there however the ‘honeymoon’ period is long gone now and I’m fully aware this condition will not go away so I need to be more pro-active in managing it better than I have been doing.

It is time to bring on the challenges and I will not allow this condition to take over my life however I’ve accepted it being part of it.

Thank you for reading this and hopefully by the time I next post I will not have shrunk anymore.

Matt

My first 9 months of AS

2011 sure was a memorable year for me but mainly for the wrong reasons. I knew I always had back and sleep problems after a hip issue back in 2002 but never thought it end up with me being diagnosed with ankylosing spondylitis.

For those of you who are not aware what Ankylosing Spondylitis is I’ll first start by giving a brief overview

‘Ankylosing’ means fusing together and ‘Spondylitis’ means inflammation of the spine. So when you put these together I’m sure you can guess that whoever suffers from this condition could be in a lot of pain.

People who suffer from this condition can encounter some or all of their joints and bones in the spine to fuse together (which is a worst case scenario, but most people usually have a partial fusion usually in the pelvic region which causes restrictive movement).

This is a painful rheumatic disease that mainly affects the spine but can have implications to other parts of the body (including other joints, tendons, ligaments, the eyes, lungs, bowel and the heart!)

This condition usually is more prevalent in men but women can also suffer from this condition. This condition usually strikes people in their late teens and twenties. It is most probable that people who suffer from this condition would have had this condition long before it is diagnosed.

So I’ve given a very brief summary of Ankylosing Spondylitis (there is a lot more to this condition though) and please see below my journey and thoughts over the last 9 months since I have been diagnosed with this condition:

Back in April I thought I needed to improve the range in my back so I tried Pilates, after an hour session with the instructor she said ‘the good news is your core muscles are there, however your back is locked and you need to see an osteopath’

So with this in mind I booked an appointment and found that my Private Healthcare would pay for the treatment, so I thought ‘excellent, I won’t have to pay any more than my excess for 8 sessions’. I needed a GP referral so off I went to my doctor for the referral only to be told ‘no I’m not going to do that.’

He was concerned with my lack of movement and said ‘you’re going to have x-rays on your spine and blood tests instead of an osteopath referral’. Which I did not expect to happen that day! I started to worry about what was up with me and had even worse insomnia than usual because of it.

The x-ray and blood tests confirmed I had Ankylosing Spondylitis and for some weird reason I found myself happy that I had a diagnosis as I had a fair few visits previously to various GP’s with various aliments and was starting to worry I’d become an hypochondriac. Seems that was not the case as they were all possible symptoms of AS and that annoyed me somewhat that no link had been established previously….

Instead of just having to deal with this I found myself with 2 other pieces of bad luck. Firstly I found myself living in an un-safe flat and at the same time was put at risk of redundancy at work – they say bad luck comes in 3’s but that was ridiculous. Not sure how I got through that period of time, possibly I’m a stronger person for it but who knows.

My GP referred me to a Rheumatologist and in August I had an appointment with them – I had been doing some ‘googling’ of the condition and kind of knew what the Rheumatologist would say but it was good to see that what I had found was right.

More x-rays and blood tests ensued and a referral to the Physiotherapists also happened, I had been reading about a charity in the UK called the ‘National Anykylosing Spondylitis Society’ who had branches throughout the UK and made some enquiries about the sessions that the Brighton branch did.

Quite anxiously I went along to my first session and found everyone there really friendly and also somewhat pleased to be able to speak to other people who suffer from this condition. The session I attended was a gym session which had 2 physiotherapists in attendance running through stretching exercises. After the hour session I knew I would ache and hurt a lot the next day but it was worth it and try to go to as many sessions as possible now (including the hydrotherapy sessions that they run.)

One thing I really have noticed since having this condition is trying to get ‘well’ people to understand that I have an incurable condition as the majority people cannot understand it and I’m normally met by ‘well there must be a cure’ and do not believe me when I tell them there is not.

The other thing I seem to encounter are the ‘well you don’t look ill’ looks and thoughts of people I speak to or see me. That one is really hard to get my head round and explain…

I have a lot of people say to me ‘why are you ok with having AS?’ to which I say ’I’m not ok with having AS, but I’ve got it and it will not go away so what is use to make an issue of it’. Suppose this approach has developed from my hip issue when I lost all use of my left hand side and had to learn to walk again. So having experienced no mobility, in my mind restrictive movement is better than none at all.

Don’t get me wrong I wish I did not have it. I would love to be able to have more than 3 hours of uninterrupted sleep each night and not feel like I’m 81 (not 31) every morning I wake up but that is life.

I try and lead as ‘normal’ life as possible and luckily for me I still have some range but I have found myself changing my lifestyle, I used to love going to music gigs and festivals but since being diagnosed I’ve reduced the amount I go to, cancelled going to 2 festivals and limit the amount of time I spend standing up. I’m aware of it but hopefully it has not changed me too much.

I do find when people around me complain of a bad back and see me they automatically apologise which in a way can be nice that they know how I feel for a few minutes at least but there is really no need. Or sometimes I jokily say ‘welcome to my world’.

I find myself having good and bad days, the bad days are hard to work through but I’ve always got the hope that the following day or the day after that will be a good day. I do not want to be classed as a victim I suppose.

Luckily I have some good friends who now understand what I am going through and offer a supportive ear when I need to unload some thoughts, one of them recently said ‘now I get why you leave early on a night out and never make a big deal about it’. I now joke to people saying ‘I’m a male modern day Cinderella’. Also from time to time, I need my own reflective time and find myself either sitting or walking on the beach lost in my own thoughts which also helps.

I know there is no cure and I will gradually get worse but I’ve finally accepted that and have the approach of ‘if I don’t live for now what chance do I have for the future’

Thank you for reading this and I hope that this has given you some understanding of this condition. From time to time I’ll add to this

Matt