hi Wombat Woo must admit I sometimes have trouble getting to sleep but not every night, trouble is I sometimes think I blame everything on Anastrozole but pretty sure the headache because it's pretty much constant is a se, might try changing to night time anything is worth a try, thank you for your reply xxx
5 weeks of taking Anastrozole, thought I was doing really well only minimal side effects, slight headache hot flushes then last night I had a mother of all headaches felt sick, still feel the same today plus very tearful, trouble is don't really know if it is side effects or not but no painkillers will touch it. has anyone found out wether taking at a different time of the day helps? I take mine in the morning. have also been prescribed Alendronic Acid to take once a week anyone had se's from this, not taken it yet in case it makes matters worse.
Thank you Gaylene for your reply; that's very interesting.
On 15 Oct, I have an appointment with the Surgical Outpatient Breast Clinic (arranged by my BCN) to discuss this further, so I shall take a list of questions, particularly about the pharmacology of the different drugs.
I am sure you're correct that all the hormone blockers have side effects. As oestrogen is so fundamental to brain activity, absence of it is bound to have repercussions, even if patients don't react to the drug itself. I was put on Letrozole first by the medical oncologist, but developed a nasty rash after three weeks. The clinical oncologist identified it as being caused by the Letrozole, so prescribed Anastrozole instead. After 9 1/2 weeks, the SEs which have developed appear to relate to oestrogen depletion as much as the drug itself.
It seems, from experience of being treated for depression, that I am particularly sensitive to dopamine levels. I am prescribed a drug, in the long term, that slightly enhances dopamine in the brain and helps keep the depression (and other associated symptoms, including fatigue) under control. Unfortunately, my current symptoms are suspiciously similar to those from before being put on the dopamine agonist (which I am still taking at the normal dose).
My GP is very sympathetic and agrees quality of life is most important. I've a ghastly feeling I'll be put on Tamoxifen as it has a different mechanism, but we shall just have to see.
I had all of your symptoms while on Anstrozole for 15 months. I was switched to Letrozole 6 months ago and while I still hurt all over and " Slower cogition; like thinking through pea soup." (love this), it doesn't seem to be quite as bad. I don't think there is any hormone blocker that does not have some side effects.
I can't remember how long I took the Anastrozle before I had all the nasty symptoms. In fact, I was blaming everything on Fibro, RA, in fact my GP doctor ordered tests to see if I had any of those (I did not). I was on it for 15 months before I was switched to Letrozole, and while I'm not symptom free by any means, the pains lessened somewhat.
By this Monday I had been on Anastrozole for 9 1/2 weeks. Over the last two weeks, I've gradually been feeling worse and worse.
Having spoken to my BCN on Monday morning, I've stopped taking Anastrozole as I'm feeling so ill in a difficult-to-define way. I'm sure it is mainly constitutional. I'm seeing my GP today.
My BCN has arranged an appointment for me to see specialists in the follow-up breast clinic on 15 Oct. The BCN thought my symptoms need attending to and that it is likely I'll be taken off Anastrozole for about 7 weeks to establish what the 'baseline' is. She emphasised that, in my case, hormone therapy is a preventative measure to lower the risk of cancer returning; it is not a treatment directed at an existing problem, and that quality of life is the most important thing to consider.
My own symptoms are:
• Joint and muscle pain especially first thing in the morning, particularly my left shoulder and upper arm (axillary node clearance on left side) and pain in my left wrist (which I seriously fractured in May 2017). Also, my right wrist, which is arthritic. These earlier injuries had settled down, but existing weaknesses seem to have been made worse by (I suspect) depletion of oestrogen.
• Increased fatigue (I have a certain level of chronic fatigue anyway which has been made worse).
• Mood changes, including depression and extreme irritability similar to that of PMT and the menopause. In other words, effects similar to anything related to hormonal disturbance as opposed to environmental factors.
• Slower cogition; like thinking through pea soup.
• Slight metallic taste in mouth, or even lack of taste.
• Loss of interest in food, but no weight loss, in fact slight increase.
I have not had chemo so that cannot be blamed for any of these symptoms. I'm mot taking any other medications that could be blamed either.
I much admire those of you who persevere for 5 years on this stuff, but I can't see myself being able to do that.
Hi everyone. I have been taking Letroxole for 3 years, since my lumpectomy in 2015. I recently saw my oncologist and told him I thought my Thyroxine might need adjusting (I suffer from hypothroidism ). He suggested it was the Letrozole causing me to feel achey and "under the weather", and changed my meds to Anastrozole. I'very been on it for just 2 weeks and I feel really poorly. I've had a bad cough, breathing problems, dizziness, upset tummy and headache. My lovely GP can find nothing wrong so we are assuming it must be the Anastrozole. Did anyone else feel really ill when first taking it? How long did the initial symptoms last?
There are other hormone blockers available and you can ask your doctor to switch you to one. I was switched to Letrozole after a year on Anastrozole when I just couldn't handle the pain anymore and I can tell a big difference. I still have body aches but since I'm 74 years old, that's to be expected. You don't have to suffer, talk to your doctor and tell him/her that you want on another med. Good Luck!
Thank you so much for your post especially since I have been experiencing for quite some time EXTREMELY bad leg pains that I can't no longer handle. I have been trying to figure out if this throbbing pain along with stiffness in both legs are the result of anastroze or arthritis (primary care provider seems to think it is). On his recommendation, I am scheduled to see an Orthopedic this week. I have been on this med for nearly 6 years and my medical occologist is suggesting that I remain on it for an additonal 5 years. She says my chance of it returning is about 10 -15% . The pain is excruciating. I don't know what to do.
I have been on the Aridimidex for five years - until two weeks ago. Joint pains within a few months, cough within a year, my bones started thinning, depression BUT the very worst of all was the fatigue - by the 3rd year it was becoming horrendous
By Christmas this last year I was begging to come off but didn’t dare. My cancer was diagnosed in 2013 when I was 74 years old. I was 80 this year and felt every year of that 80 years! My breast cancer was 3cms grade 3 / low estrogen responsive but NO node involvement. Had a mastectomy Previously I had had no health issues at all and was fit and active. I have spent the last three years like a semi invalid. I have spent the last three years like a semi invalid.
THE GOOD NEWS i finished taking this dreadful / but life saving pill until just over two weeks ago and in the last two days I realised that I wasn’t feeling that dreadful fatigue - which meant that I could only complete up to 10 minutes housework for example, without feeling heavy and so so tired that I had to sit down. Today I have walked my West highland dog around the park, been shopping and done a little gardening and though I feel tired it’s NOT fatigue, The aching joints seem to be getting better also. So - it is very early days but I just felt I had to give you ladies some encouragement to stay on least five years. There is life afterwards!
Thinking of you. 😘😘
Hi, i have been taking Anastrozole for 2 years and had terrible pains in joints of arms. Someone suggested that i take Mannatech (Bounceback). I have been ordering it from America. I was told that it will take a while for tablets to kick in and roundabout 3 months into taking the tablets I decided not to take it anymore because i was not better. I stopped taking it for a week and realized how fantastic it actually is and immediately started ordering it again. I do not have any aches or pains anymore, and will use this untill i can stop taking Anastrozole ( if ever). The basis of the tablet is Tumeric.
I can recommend this to anyone. Please get back to me with any questions.
From a cold but sunny Cape Town.
I am now 6 months in to taking Anastrazole. The first 3 months were not so bad, but then the joint and muscle pain has kicked in big time. Am getting hot flushes which I expected but can cope with those. If I sit for too long I feel stiff and first thing in the morning I hobble out of bed like a 90 year old! I have seen on here also about finger pain, got that too although it doesn’t wake me up again first thing in the morning they are also stiff. I am taking glucosamine chondroitin so lets see if this makes any difference. I exercise regularly, haven’t had dairy for over two years due to an intolerance, just wondering if massage will help, albeit expensive. I was 8/8 ER+ so need to take this as I feel this only 4.5 years to go...
I had been taking 1000mg of cod liver oil daily for over 10 years before I was diagnosed in 2015. I've been on Anastrozole for over 3 years now and not suffered any joint pain at all - the bit of stiffness can probably be put down to increasing age (now 60). Hot sweats have been my biggest bug-bear. I also do Pilates which may help too?
I am new to this site and am also suffering from severe joint pain in my fingers! It is so bad it wakes me up at night and also in the morning it takes awhile before i can even bend my fingers. I currently take 10,000 IU of Vitamin D a day (see a Naturapathic dr. also). I just found the article below and plan to discuss it with my Oncologist this week when I see her.
High-Dose Vitamin D May Ease Joint Pain from Arimidex
A small study suggests that very high doses of vitamin D taken each week may help ease muscle and joint pain associated with taking an aromatase inhibitor as part of the treatment plan for hormone-receptor-positive breast cancer. These results were presented at the 2009 San Antonio Breast Cancer Symposium.
Hormonal therapy medicines -- either an aromatase inhibitor or tamoxifen -- are commonly prescribed after surgery for early-stage, hormone-receptor-positive breast cancer in postmenopausal women to lower the risk of the cancer coming back (recurrence). Hormonal therapy medicines are also sometimes used to treat advanced-stage, hormone-receptor-positive breast cancer.
Muscle and joint pain are common side effects of the aromatase inhibitors Arimidex (chemical name: anastrozole), Aromasin (chemical name: exemestane), and Femara (chemical name: letrozole). For some women this pain can be severe. Doctors aren't sure why aromatase inhibitors cause muscle and joint pain. Aromatase inhibitors work by lowering the amount of estrogen in the body -- this estrogen decrease is probably part of the cause of these side effects. Lower estrogen levels also can cause weakened bones while you're taking an aromatase inhibitor.
In this small study, 60 postmenopausal women diagnosed with hormone-receptor-positive breast cancer that wasn't metastatic were treated with Arimidex for at least 8 weeks after surgery. All the women had muscle and bone pain that began after they started taking Arimidex. All the women took over-the-counter supplements of calcium (1,000 mg) and vitamin D3 (400 IU) each day.
The women were split into two groups:
Women with kidney problems or other medical conditions that could be made worse by high doses of vitamin D weren't allowed in this study.
The doctors used several tools to rate the women's pain at the start of the study and then 2, 4, and 6 months later:
A spine and leg bone mineral density test, which evaluates the health of bones, was done when the study started and 6 months later.
After 2 months, women who got high doses of vitamin D weekly had notably less muscle and joint pain and were better at walking and climbing stairs compared to women who got the placebo. But after 4 and 6 months, when the women got high doses of vitamin D monthly instead of weekly, the improvements in pain and movement they had at 2 months went away.
Women who got high doses of vitamin D tended to maintain bone health (as measured by the bone mineral density test) better than women who got the placebo.
Two women developed high calcium levels in their urine and stopped taking the high doses of vitamin D; other than that, the high doses of vitamin D didn't cause any side effects.
The researchers aren't sure how high doses of vitamin D each week helps ease muscle and joint pain that can be caused by Arimidex.
High doses of vitamin D can be safe as long as you are closely monitored by a doctor. Too much vitamin D can cause dangerously high calcium levels in your blood and urine, kidney stones, and kidney damage. While the results of this study seem promising, more research is needed to better understand the benefits and risks of high doses of vitamin D, especially over longer periods of time. Researchers also need to study which form of vitamin D is best for this type of treatment.
If you're a postmenopausal woman taking an aromatase inhibitor as part of your treatment for hormone-receptor-positive breast cancer, you might be having muscle and joint pain. If these side effects are a problem, talk to your doctor about how to manage them. You might be able to switch to a different medicine. Don't start taking high doses of vitamin D on your own. And don't let side effects stop you from staying on track with the treatment plan that is best for you and your unique situation.
Hi Lievre, just read your post relating to itchy scalp and skin. I have been on Anastrozole since 2014 and do suffer a little from itchy skin. Down below it's since my hair grew back and I think it's that that irritates, I occasionally need to use vagisil just to stop the itching. I have had times when I've suffered from very itchy hands and fingers too but this has passed. It stopped when I started taking my annual hay fever medication and hasn't yet returned, apart from down under which is different! I also recently bought a couple of oil products to use in the bath but these didn't help really. My skin is so dry its a joke, I now have every sympathy for people who suffer with eczema.
I think we all suffer from a variety of side effects from the pills, mine started with bad joint pain, especially the hips, but this has subsided over time. I have asked my chemist to not give me Teva brand, I get quite black moods on them. I'm not all sunshine and flowers on Accord either but the side effects are definitely less. I hope your side effects settle down soon, it's a matter of trial and error I think. I know that I'm looking forward to the day that I stop taking them that's for sure.
Hi, I'm new here but have been following the posts since diagnosis 2 years ago and have found much useful info and reassurance in them. I have been on Anastrozole and Adcal-D3 for about 18 months, for the first year combined with Herceptin injections. For the past few months I've been suffering some annoying little side effects and wonder if anyone else has the same thing - really,really dry itchy scalp with dandruff which is more like cradle cap and also dreadful external genital itching - so bad sometimes I can't stop scratching till I draw blood (both ends!) GP just recommended moisturiser and various medicated shampoos none of which helped! I noticed that the brand of tablets has changed a couple of times, now on Accord but don't know what previously - anyone know how I could find out? I know there are far worse se's (I have the sore joints,weight gain,etc.,) but somehow the itching gets me down more. Any advice gratefully received.
Hi Treeze, just to say please take it steady with the dose if you have ibs as too much too soon will upset your gut, If you’re on fb join the group as they have lots of info about taking it, if you’re not let me know and I’ll take a look for you. Kxx
Hi Treeze, similar to what someone has already mentioned I take Turmeric Paste, sometimes called Golden Paste which helps me. I make it myself, it’s cheap and easy to do, there is also a users group on fb called Turmeric User Group UK, which has more information and advice about it. Obviously check if you’re taking medication but most seem to be okay. Here’s the recipe if you’re interested.....
I have been on Accord for three months now with hardly any side affects, had a couple of headaches in the beginning but they didnt last, as for aches, well I have them before this all started! although over the past 2-3 weeks the joint in my thumb has become painful?? I have just picked up my repeat prescription and have another brand not manufacturerd in the UK! I have two more weeks on Accord and then lets see if there is any difference...fingers crossed!
Aaah Gigi, do hope you get something to help you. I had 6 months with exemestane, but have had an 'arthritic flare up' in my hands, so in a hissy fit have gone back to the anastrozole!! I am getting more and more amazed at how many of us have such difficult side effects, although will keep plugging on with them. xxx
Update on my Anastrozole story: When I last visited my breast surgeon in mid Feb., I told her that I was about ready to quit the Anastrozole because of the dibillating pain all over my body, but especially in my lower back and legs. She switched me to Letrozole and it seemed to make a small difference for a while, now I'm back to constant pain. I had a MRI done on my spine and found spinal stenosis, as well as bulging discs and arthritis, etc. (in other words, too many birthdays as my Primary Dr says). Dr sent me to a spine specialist and all he wanted to talk about is surgery or steroid shot. I declined both. Now the pain has worsened, even with me taking 15mg of Meloxican daily.
I go back to my Cancer Dr in a couple of weeks and will mention the Alendronic Acid and Adcal D3 that Rubycat talked about. After that, who knows??
I have been making a tea out of fresh Turmeric and drinking an 8oz glass twice a day.
It helps with the stiffness and brain fog.
Add a little black pepper which helps it obsorb into your system better.
I also add a little honey to try and make it taste better.
I have been on Anastrozole for 5 years now and feel like I am 90 year old.
Dr the told me to stop taking it today. I am both happy and really scared that the cancer will come back.
Good luck to you.
Hi just adding my tuppence. I think I commented way down the thread I was on anastrazole for about 6 months. After a review I was changed to Exmestane (or exmessy, as our lovely Rubycat calls it!). I've been on Exmestane now for almost 9 months. I do get a bit creaky by the end of the day, but none of the joint pain or stiffness I experienced with the Anastrazole. I have had some side effects including fatigue and insomnia, but these have improved and I'm now questioning whether these are side effects of the drugs, the radiotherapy or possibly a delayed reaction to the treatment and diagnosis full-stop, as I do feel my mojo has started to make a welcome return. I don't regret changing a bit and hope anyone reading this can be supported by their team to look for alternatives if available xx
Hello Treeze, I don't seem to have any side effects from amitriptyline, phew, defo no stomach/bowel probs at all - & also listed as s/e of the bifossywhatsits too. I got to the stage when I thought anything was worth a go to stop such debilitating pain & I'd carefully monitor s/e and see if they outweighed the good, but have not been aware of anything.
Sounds as though you could do with giving it a go - you don't know till you try and could always stop if it did cause you any problems. Hope you find some relief soon. xxx
Hi Avyi, I hope you're nausea and head aches are soon better .I have a friend who was on Anastrozole for 5 years with no side effects.Remember it's usually only us with problems that moan about them on forums , loads of women have no adverse side effects at all. Good luck with the radio therapy.
Hi Rubycat, I think I'll have to get on to my Dr . I've been on Anastrozole for 6 months and so far have had 3 different brands ! I've not been on anyone brand long enough to know if one is better than the other.Hope you're feeling better now you're on Accord.
Gigi - have you had a DEXA scan when you started anastrozole? It shows the bone density - I had osteopenia right from the start, so the Adcal D3 is to provide extra calcium (which the anastrozole strips out, arrgh). After 2 years I had another DEXA scan & osteopenia worse - it was supposed to have got better!, and that's why I now have the Alendronic Acid which is a biphosphonate.
It is the amitriptyline which I would really recommend as helping with pain relief.
Haha, was there still peanut butter on the knife in the drawer?- that's what I do.
Yes, this getting older lark is not for wimps is it? xxx
Dawn, it's worth keeping a note of the brand of anastrozole. You may not find any difference, but I did!! Teva was the worst, with Accord being the best and my doc then put on my prescription for the chemist to supply that. Sometimes it seems a long, hard road, but we'll get there in the end. Hope your s/e soon fade away. xxx
Hi, Ive only been on Anastrozole for a week and a half and its making be really nauseous and headachy. Is this normal? Im not looking forward to the achy limbs, etc that ive read about below.
I start my 3 week course of radiotherapy tomorrow.
Have to take these meds for at least 5 years
Thank you Ruby, sometimes I feel like I can't take another day of the constant pain. I take 2-3 Ibubrofen once or twice a day and Meloxicam once a day just to keep the pain down to a dull roar. In addition to the pain, my mind has gone over the deep end. I got a kitchen knife to spread peanut butter on a waffle before church Sunday morning and went back to get silverware for dinner and there was my peanut butter knife back in the drawer! Sometimes I think I'm losing my mind. Anyway, I am going to mention the alendronic acid and Adcal D3 to my oncologist for pain.
Thanks for your help.
Haha, just seen that I've repeated myself from a few months ago. Still, it is as true now as it was then .
Hello Gigi, Now coming up to my third year and I've had to change from anastrozole to exemestane because my osteopenia got worse, and now have to take alendronic acid as well as Adcal D3. Back pain was dreadful, so had MRI and osteoarthritis found. I wasn't getting much sleep with the pain and Doc prescribed amitriptyline. I started on 10mg, but that didn't seem to shift the pain, went up to 20mg and it was a miracle cure. Now getting to sleep, and even if I get up in the night (well, I always get up at least once!!), get back to sleep quickly. But the add-on benefit is that the amitriptyline helps with nerve pain and so back is pretty much pain free all the time. I do get days when back does play up, but mostly it doesn't. I still am bent over first thing in the morning and am a crab getting downstairs, but that goes. Yes, getting up after sitting/getting out of car can be tricky, but I don't need help, just do it very slowly and hang on to whatever's about. You really shouldn't have to put up with more pain. I didn't like the thought of taking yet more pills just to counter the effect of others, but sleeping and feeling a lot less pain has been worth it. Hope this is of some help to you.xxx
This could be my story! I've taken Anastrozole for a little over a year with a slight (and I mean Slight) decrease in joint pain after 1 year. I'm actually embarrased that I hobble like a much older person -- I'm 73 -- when I first stand up and have to depend on my family to support me when I'm getting out of the car or chair in a restaurant.
I've had back pain for quite a while (arthiritis ) but it has been gotten 10 times worse since I started on this medicine. There has got to be a better way of preventing the cancer from coming back.
Thanks for that Slyolddog,Your side effects sound really bad .I was on the Tera ones,but when I picked up my prescription yesterday they had changed to the Accord ones. So I'll see how I get on,and watch out for nasty side effects
I don't know how Victoria Derbyshire got her hair to grow back so nicely after my first lot of chemo my hair took ages to grow and came back in tight curls !
This just goes to show how different we all are, I got very depressed on Teva, it took me a few weeks to realise it was the medication, now I purposely ask for Accord. The dryness is a horrific side effect, my skin actually tears down below, like a paper cut, mostly small but one time about an inch. Never thought I'd have to use nappy cream at my age (to prevent the stinging!).
I live in hope that the majority of these side effects stop completely when the 5 years of taking the tablets is up. I know some women are continuing with the tablets for an extra 5 years but I'm fairly sure I won't, I feel I've aged so much, dry skin, thin hair (it never grew back great like Victoria Derbyshire's!), mood swings, aching joints.
Sparrow - I'm so sorry that you have secondary CA. I don't know what others do for their joint ache but I often take ibuprofen before I go to bed as it seems to offset the aching hips. Another thing I get now is terrible cramp in my feet and calves, ibuprofen does nothing for that though.