Hi Adam, (Michael wrote this to me, but it is really for everyone here!)
I have been suffering with UC since the mid 90’s. I receive your e-mail updates and follow you on Facebook. Now I am looking for some help.
I have been on a lot of medication over the years that both helped with flare ups and keep my UC in remission.
In early December of 2016 I had a bad flare up and the current medications of Azathoprine, Balsalazide, Rowasa and the start of Prednisone was not doing the trick. It was in April of 2016 that I started Entyvio treatments {Health Insurance Approved} – I was on the Entyvio along with the Balsalazide and the lowering doses of Prednisone I started to have relief. I was also able to stop the Azathoprine and went into remission.
In May of 2018 I started to have a bad flare-up after dental surgery and passing of a kidney stone all in the same week. My doctors at that time did blood tests and showed that the Entyvio was not staying in my body and I had to start the Prednisone all over again. This flare-up and put me out of work and I am still out of work to date. In July 2018 I started Remicade at the doctors recommendations. I had three treatments of Remicade dose of 425 that was not helping – then I had four treatments of Remicade dose of 820. This was working but not at 100%, I still had multiple bowel movements in a day and blood and mucus. During this time I was on the steroids from June 2018 to September 2018 – this was a rough time and I had a reaction when I was off them
The doctors after two colonoscopies one in June 2018 and a second in October 2018 both showed a lot of inflammation. They were talking about surgery.
The doctor then said let’s try Xeljanz – I started the Xeljanz 10mg tablets {one tablet twice a day} in February 2019 – it took about a month on the Xeljanz and Balsalazide to kick in but I have had relief where the blood stopped right away and now the frequency to use the bathroom had calmed down.
Here is the problem my drug insurance company WILL NOT PAY for the Xeljanz – we have sent two appeal letters and both were denied – CVS/CARMARK states that I need to their first preferred product Humira and or their second preferred product Simponi. My doctor does not agree with this stating it will not help and I would have a flare up. (Xeljanz was approved in the USA for treating ulcerative colitis in various conditions back in May of 2018)
Note I was on two infusions which my health insurance approved with no questions asked – and now the Rx carrier will not approve. I have been using samples from the doctor’s office, but I do not know how long this will last.
Can you help – do you know of other patients with this issue. I have not reached out to the drug manufacture as of yet, I am seeing what else the doctor can do to help. Any help on your end would be greatly appreciated.
Thank you in advance, my contact information is noted below.
Michael B
