I was diagnosed with AS back in 1994. For quite a few years I was treated with various various anti-inflammatory pain killers and then was prescribed arcoxia and sulfasalazine. The arcoxia did help with my back spasms but, due to work commitments, I wasn't constant in taking the sulfasalazine as the need for blood checks would have meant too much time missed off work, which, when working in the private sector is not always acceptable.
In 2010 contacted NASS to discuss the fact that I had lost 11 inches in height. NASS suggested that I ask my GP for a referral to Dr Hunter, a consultant rheumatologist at Gartnaval Hospital in Glasgow.
My GP referred me on and Dr Hunter arranged for blood tests and x-rays to be taken. My inflammatory markers in my blood test results were through the roof and Dr Hunter decided that the arcoxia and sulfasalazine were not working and suggested anti TNF therapy.
Before I was able to start on anti TNF therapy I had to get my chest x-rayed and get my blood tested for TB. Fortunately everything came back negative and I was accepted onto anti TNF therapy.
I was offered the choice of either having my anti TNF therapy as an infusion (drip into the vein) or as a self injection which I would do myself either weekly or fortnightly. The decision was left entirely up to me. On reflection I opted for the infusion (infliximab). This was mainly because I trusted the professionals to look after the medication better than I could and also it was easier to remember when the medication was due.
My first infusion took place on 17 March 2011. For all infusions I attend Gartnavel Hospital in Glasgow, ward 7A to be precise. The nurses are superb and there are numerous people in getting infusions for various ailments. You sit in a very comfortable chair, similar to a dentist's chair. You have your bloods taken for checking at a later time and then you are connected to your infusion drip. I usually have a few bottles of water or juice with me but the nurses do offer to make you a cup of coffee. I also take a newspaper to read along with my Kriss-Kross and Wordsearch puzzle books and generally find it a very most relaxing time.
The ward also has a TV but unfortunately for me, it is mainly women that are in for treatment and they appear to be fans of Jeremy Kyle (ARGHH).
My first infusion lasted 2 hours and was totally and completely painless, then I had to remain in the hospital for a further hour to ensure I didn't have an allergic reaction to the infliximab infusion. Fortunately everything was fine.
My second infusion took place on the 1st April with the next on 28 April.
Following on from the first infusions I initially felt a slight improvement in my posture. However I was told that it can take between 2 and 12 weeks for the full benefits to take effect.
Over the following month I gradually felt an improvement in both my mobility and the stiffness within my neck. Although it wasn't a massive improvement, I was happy to feel any improvement and it gave me the hope and confidence that my condition would not worsen. I felt extremely hopeful I might gradually see further improvements.
The main areas of improvement I felt initially were:
Before when I was out walking I had to stop every 15 metres or so to rest as my legs ached. In the weeks after the first infusions I was able to walk at least double this distance.
Previously when I was walking all I could see was the ground in front of me but, while there wasn't initially been any great improvement in this, there was been some improvement and my range of vision increased by about 2 yards horizontally.
I felt as though this had improved quite well with the movement in both my arms and legs feeling much more loose and free.
A couple of negatives I felt were:
I felt a lot more tired and I was sleeping a lot longer in the mornings and going to bed earlier at night. Previously I tended to stay up late at night, sometimes into the small hours of the morning and I was awake again at 5 or 6 o'clock the following morning. Perhaps this simply meant that the infliximab was allowing me to get a good night's sleep.
After my second infusion I started to get a slight runny nose, but what was irritating about this was a very unpleasant smell in my nose and the same unpleasant taste at the back of my throat.
While the tiredness could be explained as an effect of the infusions, on contacting Gartnavel General Hospital they had never heard of a side effect of a runny nose with a unpleasant smell. As a precaution I contacted my GP who put me on a course of antibiotics in case I had an infection.
On 9 June 2011 I went for my final ‘upload' of Infliximab. This took me to my required levels and I will now attend every 8 weeks for my 'top-up' next visit being in August. On my next visit the infusion will take less than the initial 2 hours as it is believed my body has now accepted the infusion and I will also not have to wait the precautionary 1 hour afterwards in case of allergic reaction.. One thing I did find out on Thursday 9 June was that each infusion is made up specifically based on your previous blood tests and your weight. Although the infusions are carried out under the auspices of Dr Hunter's clinic at Gartnavel Hospital, the actual infusions are prepared at Glasgow Royal Hospital under strict environmental controls and is very expensive, hence one of the reasons that you have to confirm by 11am the day before that you will be attending the clinic, as the infusion has to be used by 6pm on the day of your visit or be destroyed.
WOW!!! What a difference in the past 7 to 10 days. While I initially reported small, insignificant but hopeful differences over the past 10 to 11 weeks, over the past week I feel completely different. The differences are:
My neck movement seems to have improved to a level I never expected. When I walked around before I started on infliximab I couldn't see what I was going properly and was always worried about bumping into people.
During previous infusions of infliximab, when I wanted to check to see how much of the infusion was still left in the bag I would have to lean back, twist my body back and then look up. Even then I couldn't clearly see how much solution was left. During this last infusion I just looked straight up and I could clearly see the bag.
Also, driving in and out to Gartnavel Hospital was significantly easier. I was not forcing my head backwards to be able see where I was going but looking straight ahead. I also had more side movement when checking left and right at junctions. This is a huge relief to me as it was always a big fear of mine that my AS would one day mean I had to stop driving.
Finally it's great to drink to the bottom of a glass or cup again without having to tip a lot of it out as I couldn't bend my neck back to finish it off.
My walking has definitely become less cumbersome and less painful (pain in a stiffness sense of the word). Last weekend I was visiting my mother at hospital. In the past I usually had to stop 3 or 4 times in the journey from the car park to the ward, both to catch my breath and because of the soreness in my legs. On Saturday I noticed that the soreness wasn't really there anymore.
Then, not through being brave, but because only one out of the two lifts was in working order, I decided to walk down the stairs. Unbelievably I had no problem with this. I wasn't moving as fast as everyone else and I was still holding (not gripping as in the past) the handrail for support but I managed to get down from the 4th floor to the ground floor. Since then I have done this every day and my ability to get down the stairs seems to be improving daily.
This is a huge, significant difference for me.
My stamina appears to be greater now than it was before I started on infliximab. When I am walking along, whether just generally or downstairs, I definitely do not get as breathless as before I started. This means a great deal to me as it was sometimes embarrassing having to stop when I was in the middle of a crowd of people. Children in particular, have no patience and just brush you aside (God bless them!).
This might be because my chin is no longer right down in my chest. My improvement in neck movement has helped me hold my head higher, in more than one way.
Since my last infusion, something has changed my life completely. My marriage broke up in 2000, which I took very badly, even writing about now I still get upset. I have never had the courage to even think about a new relationship, mainly due to my AS and the perception of the way I believed I appeared to others. I felt different after my infusions, people told me about the difference they seen in me and also the difference I felt within myself both physically and mentally. I have now met an absolutely beautiful woman and wow my life has come back to me! It does help that she is an angel and is going to help me further. Lena is now encouraging me to attend the NASS group at Gartnavel Hospital, which should help even more.
I now conclude that this treatment has changed me completely and has brought my life back . A big thank you to NASS, Gartnaval Hospital, Dr. Hunter, Ward 7A nurses, my mother and of course Lena. A very special thank you goes to anti TNF therapy and I hope this story gives belief and hope to others as anti TNF has to me.
Please always remember to believe in your treatment but most importantly believe in yourself.