I am Matt, 26, from the UK, and I have UC.
To cut a long story as short as possible, I have pancolitos - moderate/severe since 2005. From 2005-2010, I had no real issue - the odd nasty flare controlled with asacol and predfoam.
In 2010 I flared, and was prescribed 40mg oral pred, and since this, I have been having a real bad time. Here goes:
1. Aug 2010, flare, (medications reduced by doctors to 4 asacol a day, as I WAS SO WELL and in remission for a long time, I weighed a healthy 75kg and am 6ft 11 - I felt great!). A flare came 6-8 weeks after the medication reduction, but could have been due to stress, as I had some issues/change of job at the time.
2. Recovered from flare, and was back on asacol and predfoam for some maintenance, until I flared in April 2011. A serious flare - with a CRP inflammation level of 66. I was prescribed 60mg of oral pred, and, once again, slowly recovered by July 2011.
3. In October 2011, on 3mg of steroid, and predfoam, I start to feel a little uncomfortable - but, weekely blood tests showed no inflammation. Azathioprine was suggested, but not followed up on
4. November 2012, I start to feel a little worse, and am scared to eat. I weigh 58kg, and am anxious, and depressed. I am informed my white cell count is rising on a weekly basis slowly creeping to 12.5. At the end of November I weak and I flare - I am hospitalized with IV steroid, which helped a little. Azathioprine is started, and I am discharged with a CRP of 21.
5. December 2011. 3 weeks later I am hospitalized - I caught the cold/flu, which apparently could of made things work. CRP is back up, and no time for azathioprine to kick in apparently. I was on IV steroid for 7 days, switch to oral pred, 40mg, with no improvement. The surgeon visited me on New Years Eve , and I came around to the idea of surgery. Then, remicade turns up - and turns my condition round in 48 hours. I went from eating a jacket potato for lunch and dinner, to bacon rolls and shortbread biscuits - because I felt good! I was discharged. At this point I was on 30mg pred, (aza was stopped - not sure why at the time), and 4g salafolk granules.
After this, the consultant and NHS saga seem to begin. The is some contradiction as to whether I should be pursuing azathioprine, or on remicade. I had 4 infusions of remicade, with the 'final' in May. All was going swell, down to 3mg pred, no real issues. However, my white cell count dropped to 3, ON THE DAY I was due a remicade (as you can tell, have not had much luck in that last year!) and my consultant told me to stop azathioprine. 10 days later...I start a mild flare.
So, the situation - with the flare being very mild, there is a huge debate as to whether I should start up on remicade again, or continue on azathioprine and adjust the dosage. I personally, went for the azathioprine option, and am currently on a pred dosage, and trying to reduce azathioprine, but, things ARE A MESS. My white cell count is all over the place, on a weekly basis - it spikes up high, then subsides for a bit, but it seems when I drop pred, it can spike a little, and I get some uneasy feels and return of symptoms. So, we balance it with azathioprine, and small prednisolone adjustments. I am currently on 75mg aza (as of yesterday) and 15mg pred, we have also switched my salfolk to colaside (basaldaside) An example of my white cell fluctuations is as follows: 15/8/12 - WBC 5.7, 23/8/12 - WBC 10.1.
Now, for my burning questions (Thanks for reading so far!)
1. Could I have been suppressed and got a low white blood cell count from being on remicade, and azathioprine 100mg previously? Different doctors give different answers, and I do not want to go down a false path of never taking a big dosage of azathioprine again if the remicade has been affecting the white cell count when I was on this treatment?
2. If I continue to struggle coming off pred, I will be going for long term remicade. A serious worry on my mind is reactions. I read about these, and am scared of them - Imagine me returning to remicade now and reacting so I am unable to take the medicine? This would be devastating, made worse by the fact that I had the option to continue on it previously, but was switched to an azatioprine approach. I have heard stories of remiade working for some people for a long long time, others, for not so long. Either way, I have to try it.
3. Another burning question! If, it is azathioprine that affects my white cell count, could I switch to 6MP? I hear again, many mixed facts and opinions of if they have the same issue with cell count? Does anyone have any experience with this?
4. Finally, I am also allowed Humira. It was mentioned yesterday that this is better than remicade, as there is less chance of a reaction due to it being a human biologic, rather than remicade which is a 50% animal biologic. I am worried - fiddling with human and animal biologics? Surely this is dangerous. This is a new drug for UC, but I am told it is excellent. Does anyone have any experience?
Okay, I think thas it. I am so scared, cannot plan anything, and frightened of food, and moving forward - I am a bit of a mess. I just want a clear path and answer. If I need surgery, I need surgery, I cannot go any lower, I am a real mess, but, surgery would devastate me, as I have been told again and again to 'keep going, we will get there, and beat this' (tears in my eyes as I write that part!)
If you have read this, thank you so much. I know its long winded and perhaps a little boring to those who are well and living a good life, but any support or options, and advice would be so great - so I can relate to other peoples experience. You can also message me if you wish!
Thank all, and I hope you are all good.