LyndaT
Anyone who has suffered abdominal pain or nausea or even been unable to walk as I have, may be interested in this.
Initially I began tamoxifen use with a generic brand, Genox. Things were quite ok. Then our chemist mentioned that they were out of Genox and suggested to use Novalex (the original form of tamoxifen). After three weeks I noticed I was becoming sore around my ribcage on the side of me and eventually was becoming immobile and very unwell. I was put through bone scans, ultrasounds, X-rays and anti-inflammatory pills to the point where our GP said that he had run out of ideas but not to worry because everything came back clear. We asked whether it may have been at all possible for the novalex to be causing the problem and was told emphatically that it couldnt be. Even the cancer clinic rejected the idea.
I was stuck, as I didnt want to stop my tamoxifen for fear of a possible return of my cancer and yet life was unbearable with the pain.
I managed to come across a forum online where other women were experiencing the same symptoms and had also no answers.
I then contacted the pharmaceutical company that makes Novalex to see whether there was any difference in the pills to the Genox that I was on before and discovered that an inactive ingredient called MACROGOL was used as a binding agent and laxative to assist with possible issues with using Tamoxifen. Research revealed that macrogol can cause ALL of the side effects I was experiencing and against advice, I decided to locate some more Genox and get back on to that.
Well, like magic, my symptoms and pains disappeared and I have tried to inform my cancer doctors as well as others to note this down so that it may be easier to begin troubleshooting by having patients use tamoxifen that does not have macrogol in it rather than put them through a whole series of expensive scans looking for something that may not exist which causes great stress on the patient.
I felt I needed to relay my findings which, I know may not apply to everyone but that I realise noone knows about this so-called inactive ingredient which incidentally is found in lots of other things we consume such as Movicol for example which is for constipation. It may be that people are blaming old age etc. for their aches and pains whereas it may just as easily be this ingredient that is giving them grief.
The reality of it is that luckily for me I was put onto Genox in the first place otherwise I would have never thought to question the contents of the pills and would have to have existed with the incredible pain for the entire five years.
