I received a letter from Professor Moots at Aintree this morning, basically running through everything that we discussed at my appointment on the 14th. He mentions that it is worth trying the Humira in the short term and that Rituximab should also be considered a legitimate option because of the possibility of resetting the immune system. He also states that a new drug called Tofacitinib may be available to me within the next year or so – this has a totally different mechanism to any that I’ve tried and is also an oral drug.
But once again the phrase ‘long shot’ is used.
I obviously know there are no guarentees with trying new drugs but I always tend to be quite hopeful when I do. Maybe I’m setting myself up for disappointment? It feels a bit disheartening to see on paper that the chance of something working is only slight; moreso than hearing it in discussion. I felt so geared up after that appointment and now I feel a bit deflated.
The fact that I’m feeling exhausted after the weekend and generally a bit low probably doesn’t help. I tried to do a little bit of Christmas shopping yesterday but it didn’t quite work out how I wanted to, meaning I not only wore myself out but also got frustrated with myself and the Still’s for getting in the way of how I wanted things to go. When things like that happen, I find myself much more inclined to take the drastic measure of Stem Cell Therapy. The temptation of a ‘normal’ life, where I can go out and do something as simple as shopping without even thinking, suddenly over rides some of my other concerns. Obviously, there’s a lot more to it than wanting to go shopping but you get the picture. I’m being offered a potential opportunity to get some sort of life back, even if I have to make sacrifices to get there.
Another thing that doesn’t help right now is the waiting. I am all for trying new treatments, but it is a long process. It is over 9 weeks since I was in hospital and they told me that I should get to start Humira in about 3 – 4 weeks and I still haven’t heard anything. Since then I have been relying on high dose Prednisolone and Cyclosporin to keep my disease activity to a bearable level, which while I am grateful that it allows me to function, is not ideal. I have had a constant run of trying different drugs for over three years now and I’m not sure how much longer I want to do it. Part of me thinks it is a small price to pay really, compared to facing chemo, but I can’t help that other part of me that is just plain fed up with the whole process.
So these are the things that are going through my mind as I get closer to my appointment with the Bone Marrow transplant doctors on Wednesday. I still haven’t made any proper notes or lists of questions (a little bit of denial?) but I feel a little bit easier about it – perhaps because it does at least feel like there are other options to try first if I wanted to, even if they are long shots. I think I probably will agree to the Stem Cell therapy at some point in the future, but the longer we can hold off the better.
For now, I think I need to slow down a bit as the Still’s seems to be lurking closer to the surface than I thought.