I was on Letrozole for two years and started developing stiff hands. Oncologist switched me to Anastrozole, and I read all the literature on this drug.
I started having low blood pressure months after starting the drug, but discounted it, because my father had it, and I thought it was hereditary. Also, a lady and her daughter both had low blood pressure. Started having fatigue, wheezing, and shortness of breath and became concerned. I was on this drug almost a year before I found out the following.
After a really deep dive, I found this:
Rare & Serious Allergic Reaction AKA Orthostatic Hypotension (low blood pressure), Wheezing, and Shortness of Breath. Why if it is a Serious Reaction that the drug companies do not list this, is beyond my comprehension.
Talked with my Oncologist, and we discontinued the Anastrozole. 3 to 4 weeks later, my blood pressure has returned to normal, wheezing and shortness of breath has almost disappeared. Ladies, monitor your blood pressure when on this drug. Report to Oncologist if you are having these problems.
Thanks, suesandy, for taking the trouble to report this.
I found it horrifying when I realised that oncologists only give the headline benefits and dismiss the common side effects as manageable for most. Is it deliberate that they don’t give the patient full information on the ‘cons’ so as not to scare them out of taking their wonder drugs? How cavalier and patronising. Or is it simply that they don’t keep up to speed with the latest on the hazards of each drug as we trust them to? How remiss.
Either way, seriously ill, confused and frightened patients deserve so much better.
Dear Misty K
Absolutely bang on.
Agree that speaking to Oncologist is essential but doing so was like getting a tea invite with King Charles.
I am now on an ok brand of Anastrozole despite it being often unobtainable.
Agree that crippling pain that seriously affects QOL is often dismissed by professionals as what we should put up with to have the benefit of taking HT drugs.
Can anyone explain to me why there is a one size fits all dosage: s.o. with a Stage 1 grade 1 HR+ gets to take the same dose of these drugs as s.o. with grade 4 with mets?
It’s only an educated guess (so hopefully if I’m wrong, a nurse will correct me), but aromatase inhibitors, of which Anastrozole is one, suppress oestrogen production in the body because this hormone feeds breast cancers, some types more so than others. I imagine that at whatever stage the cancer is, this is just one tool in the box that might help prevent/slow cancer growth. The dosage is the same because it is always aiming to erradicate as much oestrogen as possible. A more advanced cancer will obviously be having a lot more thrown at it besides. (Hope I’ve got this right!)
I was scared off AIs in general, by the possible serious consequences, and by the all-too-obvious debilitating side effects (after 10 months of persevering). I’m not a lightweight but they were changing the person I was too much.
Thank you for thinking it through - I expect you’re absolutely right!
I so hate the side effects and daily reminder as well as lack of transparency surrounding AIs - if they’re all I’m taking I guess I’m lucky
If I am understanding your post, you were on Anastrozole for 10 months, but stopped taking it due to the side effects.
I am 72 and have a very queezy stomach, degenerative disk disease, arthritis, and all the other wonderful side effects of being older and being a former runner, swimmer, and tennis player.
I have been prescribed Anastrozole, but I’m considering not taking it due to the side effects.
I 1st was taking Letrozole for 2 years, then Anastrozole for 10 months. I had developed Low Blood Pressure, not thinking much of it, as my father had problems with Low Blood Pressure. I thought that it was genetic, but found buried deep in research, it was an Allergic response, accompanied by Wheezing, Shortness of Breath! This is a Serious and dangerous reaction, as it makes you lightheaded, and can make you pass out. I would have to lay down and sometimes just made me go to sleep. Yes, it does not help your bones, which I noticed with changes in my bone density. I believe that your physician can give you medications for the bone problems. As for qweezy stomach, I took the medication before going to bed, never had that problem. Until you have had really Low Blood Pressure with or without Shortness of Breath, you do not understand how much it impacts your ability to function. Talk with your Oncologist about how they can mitigate your degenerative disk disease with this medicine.
Also, I found that the Letrozole could have the same Low Blood Pressure, Wheezing, and Shortness of Breath Allergic Reaction. Allergy to anything is not good.
You understand my post correctly. I reluctantly tried Anastrozole after delaying for 5 months from fear of the much more serious risks. The first 6 months were bearable but thereafter and by 10 months the side effects became too debilitating. I opted not to try any other types of AI because I believe the side effects were due to oestrogen suppression, the common aim of all AIs. (I also, reluctantly, started bisphosphonates - zoledronic acid - but had reservations about their continued use too. Once off AIs, there was no need of further infusions of it.)
I am biased in that I’m drug averse anyway and don’t like the trade off there usually is with them. I also dreaded some of the other common and rare-but-possible consequences. I have been accused in another thread of discouraging people from taking aromatase inhibitors (eg Anastrozole). I would never bring pressure to bear on anyone. All I will do is recommend gathering as much info as possible before making an informed decision for yourself, by talking to your oncologist (who will hopefully be more forthcoming and transparent than mine) and by looking up the drug on official well-known institutions’ websites (such as NICE - National Institute for Health and Care Excellence). Also, ask your oncologist to use the NHS Predict tool for estimating your particular risk of recurrence and how much or little AIs might reduce that risk (less than you might imagine).
All I hoped to do was encourage people to consider both sides of the debate and take the path and choice they felt they could live with. Statistics and anecdotes do seem to suggest there are plenty of people who are lucky enough not to suffer any side effects or only mildly. If you test one or more of the AI types, you may find you are one of those lucky ones.
With all good wishes for a complete, straight forward and permanent recovery, and in coping with your other challenges
I met with a Medical Oncologist (pill pusher) last week and a nurse. I told her that I had made the decision not to take Anastrozole due to reading about the side effects and testimonials regarding side effects.
I did have a bone density scan, very similar results to one I had 20 years ago. As I’ve had 2 kidney stones which had to be removed surgically, calcium supplements are not recommended. After running for years, tennis, swimming, and now, water aerobics, I’ve worn off muscle ends and worn out meniscus, but I have low-density femurs?
I’m 72 and will be 73 in December, and at such a different place in my life than when I was 50, or even 60. I took the survey and put my BC diagnosis and treatment in. The results indicated only a 15% chance of BC returning in, I believe 5 years. And, I’m good with that.
