... is dangerous.
Over the past few months I have had joint problems in my thumbs/wrists, sometimes also fingers and, it feels like now it seems possibly one ankle. Although the acute phase has pretty much passed for my wrists, they are a lot weaker than they used to be. Plus I do a wonderful impression of an 117 year-old when I get up in a morning. I am pretty well convinced that this is a drug side effect, a rare one, but one that I have found a small number of others to be experiencing.
So, I've been doing some research into this and today found a proper research paper that not only supported my hypothesis but seemed to offer a possible solution... except that I was unaware of one important thing... the form of the drug that does not have these side effects ceased production in the UK in 2010. Which is, I guess, why so many oncologists, GPs etc are not yet recognising the side effect I am experiencing.
It seems that somewhere between 13% of people taking adjuvant Tamoxifen in one of its three generic tablet forms available in the UK experience some degree of arthralgia (joint pain) but that people who were prescribed the Nolvadex form had no such side effects. A research project showed that switching from generic forms to Nolvadex alleviated the arthralgia in about 95% of those in the trial.
Whoopee, I thought, problem solved. The danger of a little knowledge. No, Nolvadex is no longer available, it ceased in summer 2010.
So, I think it behoves me to jump up and down a bit and make sure that those treating me know of the research so that they do not dismiss my effects. Then, hopefully, in another decade the recorded incidence of joint pain using generic Tamoxifen will mean that the side effect finds its way onto the leaflets... or even better, someone will have sussed out which binding agent(s) are causing the problem and have sorted it out.
In the meantime (phrase of the moment) I will plod on with my Tamoxifen as sore wrists/thumbs/etc and old granny stiffness are infinitely preferrable to the alternative. As another current phrase/saying goes: dayenu.
Comments
So sorry to hear this, Catriona. Joint pain with Arimidex is common, but with tamoxifen? :-(