This is a complicated one - so any random thoughts that help me reflect on how to make this decision welcome!
I’ve been taken off treatment to have surgery for Crohn’s (3 weeks ago). With the Crohns’s diagnosis, the specialists have made an assumption that the arthritis and all the other things that fit PsA are related to the Crohn’s - this is ok, they overlap diseases with very similar treatments so I have not argued about it while the Crohn’s is active.
In a weeks time, I see my gastro to talk about if we need to commence Remicade. This is pretty much the last one I have left that is effective for both Crohn’s and all the arthritis, eye inflammation etc.
I’ve got morning stiffness and sore thoracic spine/ribs that lasts for about an hour, a sore foot if I walk too much, minor blepharitis, Crohn’s skin rash. Very mild really at the moment.
There are two reasons to contemplate waiting - I’m only 46 and down to the last (non-experimental) drug approved in Aus, and I have a precancerous condition that is still moving towards cancer.
The statistics for conversion to cancer based on my numbers are 50% in the next two years, 65% in the next 5 years. I have an 11yo daughter. If it eventuates, it is a terminal but sometimes slow moving cancer that can have long periods (~5 years) of remission after first treatment (multiple myeloma).
I feel that there is really not enough data to assess scientifically (they tried Enbrel as a treatment for it, but 4 of 10 people accelerated and there was no positive response in other cases, though there has been a lot of postulation that Remicade and Humira will have a different effect and could help it - not sure I really understand their theory there).
So I’m always happy to read if you have links to papers, but I think it is more about, how am I going to feel when I look back at my decisions? What would you guys be thinking about?
PS I have known about the high risk of cancer for a year or so now, so whist I’m still sad, it does not feel raw or devastating any more