Hi,
Quick background: I had CML since May 2015, now, 39 yrs, was on Glivec 400 initially, gained MMR within 4 months, reduced side effects after first 6 months.
After first 2+ yrs on Gleevec, NHS changed to generics - when I was offered Wockhard first, which caused minor side effects, so they changed to Teva Imatinib (Candian brand), which again caused side effects and then finally got Sandoz (same as Gleevec from Novartis).
Two more years of painstakingly repeating to every new pharmacist that I cannot take any other Imatinib other than Sandoz, I have been lucky to get it finally everytime.
However, this time, everything changed, they didnt have sandoz and gave me a brand ACCORD. Unlike any other brands, Accord was really bad, I had breathlessness within first 10 days (1 strip), severe tiredness and burning stomach. My 4 years of experience of coping up with Imatinib, which had returned me to a very normal life, seemed all useless now.
So, stopped the medication, called up my Dr, and explained the situation. They discussed with Pharmacist, who confirmed that they cannot get Sandoz, and so Dr. escalated to Barts / etc , and finally they have come back today with the information => "NHS England has stopped purchasing Sandoz."
Cost of 30 days of Sandoz is £1800/- and odd, while that of Accord is £12/-. So, NHS england is no longer going to puchase this.
Its my 7th day today I am out of medication, and have an appointmen tomorrow with Dr. to discuss the case further. Over the phone, she even mentioned that if its gets worse, they might refer me to 2nd level of treatment, which doesnt make any sense - as I am still under CMR (Undetectable), a status which has not changed since last 3 years.
What are my other options / brands available ?
Can I stop the medication completely and see what happens ?
Best Regards
D