Hi all - yes, chemo is now being prescribed for Crohn’s. I was so sick of the merry go round of steroids - moonface, fat pad on the neck, going up 2-3 sizes in clothes that I decided to do some research on the internet 7 yrs ago, when we first got a computer. I found that methotrexate was being used in the US for Crohn’s, and although not without significant life threatening side effects (it affects the bone marrow production of red cells particularly) and can be toxic to the liver. My then gastro - thank God now gone off to academia in Oxford, seemed personally affronted that I had found another medication as an alternative to steroids. He said it was not licensed in England for Crohn’s, but was for cancer, rheumatoid arthritis and psoriasis because the mnfrs felt there were too few patients with Crohn’s to justify the expense of the licensing procedure.
I did get him to prescribe it eventually - well, when I was in sales a newspaper article on me said I could sell ice cream to eskimos! The problem was that the gastro was not aware that mtx must be accompanied by folic acid, and I got quite ill with macrobiotic red cells. A young GP I had at the time, who also had Crohn’s, prescribed the folic acid for me, and referred me to a new, youngish gastro at my hospital. He has been brilliant, although of no use when I got bc and had to stop the mtx for FEC chemo. His opinion was that bc is life threatening, and Crohn’s is not.
I am still doing well on mtx - gastro says he has never heard of anyone tolerating mtx for 7 years, but I never “present” normally. He has changed the oral tablets to self injection weekly and I have not had a single rectal haemorrhage. I do have to have monthly comprehensive blood tests, but aside from my red cells being out of range, everything else is okay.
The one thing neither my Oncologist nor Gastro can explain is: mtx was one of the old bc chemo drugs, so how come, since I was taking it for 2-3 yrs before bc dx, I still got bc? Even on my medhelp Crohn’s forum, I haven’t found anyone on mtx, and certainly not with bc. One of the side effects is lymphoma which can a tad scary.
My gastro did ask (as have all my previous ones) if there is any Jewish blood in my family. I don’t know, but suspect my maternal grandfather was. Apparently both Crohn’s and bc is prevalent in the Ashkenazi Jewish population of Eastern Europe and of course, during the pogroms a large percentage of the population emigrated to western Europe and the US.
A lot of research has been going on recently into the genetic probability of Crohn’s and at least one, NOD2 has been identified as a precursor to Crohn’s.
Just my bad luck to get both Crohn’s and bc - my GP said I was dealt a bad hand of cards when I was born. My response was, well there are far worse genetic diseases than mine.
Sorry for boring you - Crohn’s is so little understood by the general population and almost impossible to talk about. When friends ask how you are, it is difficult to say: “well, I have to go to the lavatory at least 6 times in the morning, have to carry clean underwear if I go out,need to know where every public toilet is and spend a fortune on cotton knickers, so I can boil them!”. So, I don’t even go there - just smile and saying I am doing fine thank you.
Thanks to everyone on this site for being so welcoming and informative.
Liz.