Brands make a difference

 

“I was shocked at the difference a brand could make.”

    There appears to be widespread, but largely undocumented, experience in relation to the way that differing brands of hormonal treatments can lead to a significant increase (or decrease) in particular side effects. 

    While Tamoxifen is often described as a ‘well tolerated’ treatment, particularly in comparison with harsher treatments like chemotherapy and radiotherapy, it is not helpful to view hormonal treatments as the ‘soft option.’ Our members regularly report a wide range of debilitating side effects, including joint and muscle pain, hot flushes, disturbed sleep, poor sexual health and, as we know from previous discussions, impaired cognitive function. Less recognised is that very many of us find these side effects increase, or decrease, depending on the brand of medication.

    Our experiences as a group were wide ranging, both in terms of the named generics we had been offered, and the way we responded to them. The main brands of Tamoxifen used by us were manufactured by RelonChem, Wockhardt, Genesis and Teva. 

    A picture emerged where many of us had noticed specific and unpleasant side effects due to changes in our brand, but also that these effects varied considerably between us. For instance, some of us might find one brand made us feel so sick that we could not take it, another really caused us to experience vaginal soreness, or yet another caused an unbearable increase in our hot flushes. 

    

    Although no one brand stood out as being preferred by the majority of us, it became clear there is significant impact on us if our brand of medication is changed. Whether this is because we become tolerant to certain brands after a time (so it's the chopping and changing that affects us) or it’s the fillers used in the brands themselves that affect us, is unclear. 

    Those of us taking Aromatase Inhibitors like Letrozole, shared similar effects, although here a huge variation in cost also plays a part in availability and willingness to prescribe. A few of us shared that we experienced no discernible changes between brands, however, for the vast majority of us, these variations had a negative impact on our health and wellbeing and in a few instances, these side-effects could make the difference between continuing with our hormonal treatment and stopping it altogether. Many advised that it is well worth anyone struggling to manage side effects to consider changing their brand to see if it becomes easier to tolerate.

    Given the proven effectiveness of hormonal treatments, and the increasing longevity of prescribing regimens, we felt that our experiences needed to be taken more seriously by medical professionals.    

    A few of us found our pharmacists and GPs sympathetic to the variations in our response and that they were willing to try to help us to source our preferred brand. Others reported finding their experiences were completely dismissed or were told that it was simply not possible to source one brand on a regular basis. Sometimes, despite the support of both GP and pharmacy, particular brands become unobtainable for no apparent reason. 

    In the absence of research, some of us had developed our own theory for the wide variations in side effects, even going as far as listing brand ingredients to use as a basis for comparison. The most common hypothesis among us was that different manufacturers use different fillers – coatings, for instance, and it might be possible that that these different ingredients subtly affect the way that the medication is being absorbed by our bodies, leading to significant changes in our tolerance to side effects.

    Interestingly, this phenomenon, whereby patients experience a tolerance to one brand of medication, seems to be more widely accepted in relation to other conditions. For example, some members reported having more success in obtaining continuity of brand treatments for epilepsy and even HRT.

    As far as we were aware, there is no standard protocol in place in relation to the brand of medication we are prescribed. Indeed, several of our pharmacist members very helpfully explained that GPs are trained not to specify a generic manufacturer (although some do) due to the expectation that there is no difference between generic brands, and that most of us won’t be aware when an off-patent drug is prescribed. Quite reasonably, on the face of it at least, the expectation from the NHS is that pharmacies should be using the cheapest brand at any given time to protect our cash-strapped health service, which then also makes it difficult for pharmacies to offer their patients any continuity of a particular brand. 

    Many of us did not know that even if our Oncologist specifies a particular brand, for instance if we request it due to intolerable side effects, that it is actually our GP, as the person in primary care, who is responsible for our prescribing. Finally, some of us (hesitantly, because the focus of our group is the psychological impact of breast cancer, not politics) expressed concern about the possibility that Brexit may cause supply difficulties which in turn may mean that we may increasingly face being given different brands of generic medication than we are used to.

    We would like to know why it is that different brands have different effects across individuals? Why it is that ingredients are different across brands? Our resounding conclusion was that this is an area where more research and information is needed.