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

5 comments:

  1. Good luck with your Humira. I too have AS and take Humira- it transformed my life. My stiffness massively reduced, my pain levels were considerably lowered, allowing me to reduce my painkiller dosage, my mobility improved, I've been able to exercise more regularly and do some of the things I've not been able to for years. The biggest thing for me was the effect on my levels of fatigue - within two injections, I felt largely like a normal person -bags more energy - which allows me to live a normal life. Yes, there are side effects, you need to be careful with infection control - both within your house (I have separate towels, cups only I use, etc) but also more generally - it helps if friends and family are understanding and don't visit when they have a cold or stomach bugs, etc (I discovered this when I went down with every bug doing the rounds - now people let me know if they've got something and we re-schedule or I take a calculated risk). I also found that I became quite anxious and a bit panicky for a couple of days after my injections - which very thankfully passed after about my fourth injection. Noone told me about this, but when I googled it, it turns out a lot of people experience this - it helped to know that this was just a *thing* that would pass with time, and lo and behold it did. Anyway, hope all goes well - you very quickly get used to the injections - I found that leaving them out of the fridge a little longer than advised helped massively with the pain of them (as did ensuring I had some pain killers in my system!)- but most of all - I hope it has the same positive effect on your life as it did mine. I'm having a break from it at the moment as I'm having a medical (unrelated to my AS) thing in a couple of months - and can't wait to be injecting that liquid miracle back into myself :-)

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  2. For me it really was amazing. I was almost unable to move/exercise and taking shed loads of painkillers and anti-inflammatories...day one after the first injection I felt great and was able to start excercising almost immediately and I haven't had a single painkiller since then (3 months)
    I had the same anxious palpatations for a couple of days after the injections but it does pass. Enjoy your new lease of life! Gareth

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  3. Everybody responds to drugs differently, and some show little or no reaction at all. But I also had an astonishing response to Humera, basically I had a 3-year break from having AS. From day 2 I felt that something had changed deep in my body - I was still a bit stiff but I could feel that my neck had so much more movement than I had had for nearly a decade. Quickly I lost almost all symptoms of AS.

    However a note of caution on a point which I feel is not taken into account by rheumatologists when they are explaining the effects of anti-TNF in AS, which is this: anti-TNFs can 'wear off'. Your immune system can become resistant to it. For me it happened after 3 amazing years, and I wasn't psychologically prepared for the fact that I could go back to how I used to feel with AS (achey, stiff, pain). And that was really tough to go through, I got really depressed. Good news is I've switched to another anti-TNF (Symponi) which is having some success and it's slowly getting back to being more manageable.

    Hopefully this has been explained to you, because it wasn't for me - Good luck and thanks for sharing, really looking forward to the next post, please please keep writing!

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  4. Those TNF inhibitors are amazing medications. I hope you experienced quick relief and are already feeling improvement. One note - I found the auto injector pens pushed the med in too fast for my liking (personal preference). If you find that the med stings too much, see if you can try the syringe; that allows you to go slowly and doesn't sting nearly as much.

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  5. Hi I would like to add I have never tried TNF as my GP wouldn't allow it so I went out to use myself as a guinea pig and ordered things that sounded would help AS. I won't go into it here as I had done this journey 2 years ago and forgotten everything I tried but ended up with great results using Baclofen a GABA type drug. I thought I found my wonder drug, I could finally live without the spasms.
    Until I had a chance to talk to a Consultant Rheumatologist via my health insurance. I didn't want to tell him I was self medicating in case it effected my health insurance claim.
    He said Pregablin would help my condition also a GABA type drug. I decided to tell him I was self medicating with Baclofen and that had helped extremely. He added that Baclofen works on a physical level neurological level and a combination of both would be perfect. This came as a revelation to him as much as it was for me.
    I eventually managed to get Pregablin on the NHS with his recommendation. When I first tried it I realised it was the missing ingredient that completely knocked all the effects of Anklosing Spodilitis out. I hadn't even realised that there was still a slight niggling pain inside my head and neck until I took Pregablin.
    So to concluded my journey Baclofen alongside Pregablin truly worked for me. And the good thing is that Baclofen has no side effect (for me anyway), Pregablin does make me drowsy but I noticed I didn't even need one tenth of the recommended dose so I didn't have any drowsiness on this dose. So I only took 10mg of Baclofen every 2 to 3 days and 75mg of Pregablin every 3 to 4 days. This worked for me maybe it will work for someone else, I don't know.
    The brands I was taking was Lyrica by Pfizer and I know the NHS were paying £200 for a months course but like I said this would last many months. Baclofen was called Miorel by Kleva I found on the internet for around £10 month.
    Hope someone else can try this combination to see if they get the same results but please consult your GP especially if your taking other drugs.

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