Hello. I haven't posted here before but have been reading this forum since starting Entyvio. I am 40 years old and have had crohn's for 24 years. I have 180 cm of bowel left and Entyvio is my last hope, as I have been on all the other drugs and had some bad reactions to the TNF's and am no longer able to take those. I have also tried many, many things and spent lots of money, trying alternative treatments.
I had my 3rd Entyvio infusion on this past Friday. I am on Prednisone, 30 mg and Imuran, 100 mg. Since Friday, I have had horrible back aches and really bad abdominal pain. Everytime I eat, my stomach seems to fill up so quickly and I feel very full and my stomach becomes distended. This is followed by gas pain and lots of bloating. :0(
We live in Illinois and I have a local GI here, though he is not much help and I would love to change Dr.s. However, I am also seen by a terrific Dr at Mayo Clinic in Minnesota, who is simply terrific so we travel up there for appointments, tests, etc. I have my Dr. here only because someone local has to order the infusion of the Entyvio.
Last week, I noticed some balance problems and have been having major mood swings and brain fog. I have noticed this since starting the Entyvio and it seems to be getting progressively worse. However, I am also on the prednisone so it is hard to tell what med is causing which symptoms. I went to a Dr. last week because of my balance issues and mood swings and he immediately decided (after only reading about Entyvio right before he walked into see me), that I could have PML. I was referred to the local E.R. and went the next day and had an MRI of my brain. Again, the Dr.'s there also knew nothing about the Entyvio....I even had to spell it and tell them about it. My MRI showed no PML, according to the ER Doctor but Mayo saw a copy of it and said that there are some other things that they would like to invstigate further, but assured me that they did not think it was PML either. My Dr. at Mayo told my husband and I when we were there for tests this past August that she feels that Entyvio is safer than Remicade, in her opinion and that there is not a "real" risk of PML. We trust her, completely, which is why I decided to take the drug.
But now, this pain is horrible.....I think that I would rather be going to the restroom 15 plus times a day again, like I was last week. The change has been very quick and now the isssue is that I am passing small amounts (pieces, if you will), of formed stool. I also have a slight fever.
During my visit in August, Mayo saw that I have more narrowing and they told me that surgery was probably in my near future but with the small amount of bowel that I have, that we should wait until it was completely necessary and the hope was that the Entyvio would help and I wouldn't need surgery.
It is strange to me, but my gas and bloating symptoms have gotten much worse since I started the Entyvio. It is almost like the Entyvio has caused more inflammation to occur......though I am not an expert. I just know that I feel progressively worse, after each dose. I am frustrated and feeling quite hopeless. I was wondering if there were others who may have experienced this and what your thoughts were. I am not sure what they next plan would be for me. I am nervous about having another surgery, even though I have a terrific surgeon at Mayo and he would be doing strictureoplasties (spelling I know is wrong).
Thanks for listening.
Amy
Hope your all doing well!
I suffer with chronic fatigue also and have B12 injections so hopefully it won't make me more tired or I may have to hibernate for a week lol
